The Toxic Truth About Gluten-Free Food and Celiac Disease

by Jordan Reasoner

“What is food to one man may be fierce poison to others.”—Lucretius

Today, even the smallest grocery stores across America are beginning to carry gluten-free foods in a “healthy living” section, right next to the green tea.

Gluten-Free foods are becoming ubiquitous and synonymous with living a healthy lifestyle… even for people without Celiac Disease.

But is gluten-free really healthy? Will it make Celiac Disease a distant memory?

I’m here to tell you no… and there’s a lot to talk about.

The Gluten-Free Diet is the Wrong Prescription for Celiac Disease

In the last part of this series, I showed you that the Gluten-Free Diet isn’t enough to treat Celiac Disease patients and anyone using it as their only treatment protocol is at risk for dying much sooner than they should.

Evidence is piling up that high inflammation, poor vitamin status, and leaky gut persist on a gluten-free diet, which leads to one thing: untreated Celiac Disease…

But what could possibly be wrong with a gluten-free diet?  Doesn’t gluten cause Celiac Disease?

Yes, gluten causes Celiac Disease and it must be eliminated to treat Celiac Disease. In fact, research suggests that even an acute gluten exposure triggers a 70% increase in intestinal permeability (leaky gut) and spikes inflammation for as much as 6 months.[1]

But there’s a laundry list of other foods that drive inflammation and keep the gut leaky. Don’t get me wrong, gluten is the worst offender. But a Celiac’s gut is severely damaged and highly susceptible to poor food choices. If you don’t remove the “other dietary triggers” contributing to the disease, you’re going to end up sick and pissed off like I was. Going gluten-free isn’t enough… and here’s why.

Eating Gluten-Free is Usually Toxic

Mainstream literature on Celiac Disease tells us that eating gluten-free is a healthy lifestyle choice and doctors regularly explain it as the only way to treat newly diagnosed Celiac Disease patients. But the treatment plan is dripping in the same conventional wisdom that created the current Standard American Diet (SAD).

That’s the rub: the average gluten-free diet is built on the same foundation as the SAD… both are low-fat, highly processed diets made up of toxic foods.

The biggest problem with the Gluten-Free Diet is the reliance on processed foods that are low in nutrients and high on toxins.

The standard Gluten-Free Diet typically contains 4 specific food toxins that contribute to leaky gut, inflammation, and poor vitamin status:

  • Cereal grains (like corn, rice, and oats)
  • Soy (soy milk, soy protein, soy flour, etc.)
  • Industrial seed oils (Canola oil, Rapeseed oil, safflower oil, and sunflower oil)
  • Sugar (especially high-fructose corn syrup and table sugar)

Even though the worst offending food toxin, gluten, is removed – the Gluten-Free Diet relies heavily on the other four agents of modern disease to create a diet that “looks” very similar to the Standard American Diet. In fact, many types of gluten-free pasta and other packaged foods are loaded with higher concentrations of these 4 food toxins than their original counterparts.

Gluten-free Cereal Grains Are Waging War on Your Gut

In “How Gluten Causes Celiac Disease,” I explained that the main reason we don’t eat wheat and other gluten-containing grains is that they contain a protein called gliadin, which is a prolamine that increases zonulin production causing leaky gut and inflammation.

And remember when I said that plants carry weapons of mass destruction?

It’s no joke… plants are concerned about their survival just like we are. They don’t want to die, which is why they have defense mechanisms to protect them, like toxic antinutrients and proteins that should deter any living being from eating them.

Most cereal grains contain a toxic protein called “prolamines,” which are knurly, tough proteins that humans can’t digest. The research is very clear: we aren’t equipped to “digest” or break down prolamines small enough to absorb any nutrients.[2]

Toxic prolamines give the plant a protection mechanism for their survival (since they can’t get up and run away). These proteins irritate the gut lining and sneak their way past the intestinal wall in humans and animals that eat them.

Gliadin is the prolamine in wheat, but other cereal grains common on the gluten-free diet have similar proteins that also cause problems:

  • Zein, the prolamine in corn, has been shown to be problematic for Celiacs[3]
  • Avenin, the prolamine in oats, triggers a powerful inflammatory response in Celiacs[4]
  • Orzenin, the prolamine in brown rice, can cause inflammation in the gut of children[5]

Prolamines are the big guns defending the plant from being eaten alive… but that’s not the only part of these cereal grains that cause problems. They contain another secret weapon just as powerful…

Plant Lectins in Gluten-free Cereal Grains Are Toxic Too

If prolamines are weapons of mass destruction, then plant lectins are the plant’s special forces executing individual suicide missions against your gut lining. These toxic sugar-binding proteins don’t get digested either, and they bind to the cells on the gut wall (enterocytes) and prevent them from completing their normal healing processes (causing them to die). Not only that, but research shows they weasel their way past the intestinal wall and cause leaky gut… and trigger our old friend inflammation.[6]

These so-called “healthy, gluten-free grains” are waging war inside your gut because they don’t want you to eat them either… just like gluten. And so far we’ve talked about how these cereal grains promote leaky gut and inflammation…

But remember earlier when I made the point that a gluten-free diet leaves many Celiacs with inflammation, leaky gut, and nutrient deficiencies?

Phytates Steal Vitamins and Minerals Right Under Your Nose

Phytates are not for plant defense – they’re for self-fertilization of the plant. They’re specially designed to keep the plant supplied with the necessary vitamins and minerals it needs to stay alive.

When we eat them, they bind to metal ions inside us, so they can impair the bioavailability of critical minerals like calcium, magnesium, iron, and zinc.[7] Not only that, but they inhibit the enzymes we need to properly digest foods and extract nutrients from them.

It’s a 1-2 punch; they tend to steal the minerals we need and then rob us of the ability to properly extract nutrients from the foods we eat.

A diet high in grains may also reduce the body’s ability to process vitamin D[8] and low vitamin D is associated with leaky gut.[9]  (If you still think you need grains to be healthy, read this article.)

These toxic assaults all add up… and they begin to paint the picture that the Gluten-Free Diet doesn’t work. Even Quinoa, a frequent staple of the “healthy” gluten-free diet, contains large quantities of Saponins. Saponins are another plant defense chemical that severely damages the gut wall and causes leaky gut.[10]

Soy Disrupts Your Hormones and Your Thyroid

Soy is another food that gets coined as “healthy” in mainstream media. It’s found in many gluten-free foods and is even touted as an alternative to eating animals. The Soy Industry has spent a TON of time and money trying to convince us soy is healthy. The reality is: Soy is filled with toxins. Here are the 4 main problems with soy in regards to Celiac Disease:

  1. Soy screws up your hormones because of the presence of phytoestrogens. This is important because these phytoestrogens are linked to cancer growth and infertility problems. Your hormones need to be working correctly to recover from illness.
  2. Soy messes up your thyroid. We already covered that if you have Celiac Disease you’re chances are extremely high of getting other autoimmune conditions of the thyroid (like Graves Disease). The same phytoestrogens messing with your hormones are also implicated in hypothyroidism and potentially thyroid cancer.[11]
  3. Soy is high in phyates, which means it robs you of valuable minerals like calcium, magnesium, zinc, and iron.[12]
  4. Soy increases the need for more vitamin D, which we already know contributes to leaky gut.

For a complete listing of the toxic effects of Soy, check out this PDF from the Weston A. Price Foundation. Just like grains, soy contains toxic chemicals that don’t support recovering from Celiac Disease. Simply put: there’s much better quality food to put in your mouth.

Industrial Seed Oils Inflame Your Body

Consumption of industrial seed oils (corn, cottonseed, soybean, safflower, sunflower, etc.) has dramatically increased in the last century and the Gluten-Free Diet is no exception. Many processed foods off the shelf contain these seed oils that are high in omega-6 fatty acids. In fact, you might even think that some of these oils are “healthy.”

Here’s the thing: when Omega-6 and Omega-3 fatty acids are in a balanced ratio, they don’t promote inflammation. But when Omega-6 fatty acid consumption increases without a corresponding increase in Omega-3 fatty acids, the ratio is out of balance and inflammation occurs. It’s common for a gluten-free diet to be high in omega-6 fatty acids from industrial seed oils and low in omega-3 fatty acids. That’s a recipe for an inflammatory cascade…

Our friend Chris Kresser has one of the most detailed explanations of this process in his 9 Steps to Perfect Health series, read it here for the full breakdown. But the short version goes like this:

“It’s likely that the increase in omega-6 consumption has played an equally significant role in the rise of nearly every inflammatory disease. Since it is now known that inflammation is involved in nearly all diseases, including obesity and metabolic syndrome, it’s hard to overstate the negative effects of too much omega-6 fat.”[13]

Bottom line: industrial seed oils promote inflammation by dramatically affecting your ratio of n-6 to n-3 fatty acids.

Sugar Fuels the Fire Roaring in Your Body

Here’s 141 reasons why sugar ruins your health… but I want to focus on what it feeds.

Carbohydrates and Sugars are the primary food for the bacteria in our gut. Bacteria live on sugar – that’s normal. What isn’t normal is the type of bacteria found overgrowing in the gut of a Celiac patient. Normally there’s a balance between good and bad bacteria.

When the delicate gut flora balance gets upset, opportunistic or pathogenic bacteria can quickly take over and cause “Gut Dysbiosis” or small intestinal bacterial overgrowth (SIBO). One reason Celiacs frequently have gut dysbiosis is a result of the damage to the villi of the small intestine. During the active stages of Celiac Disease, the villi aren’t working properly and carbohydrate malabsportion can occur (meaning there’s suddenly a ton of extra food for the bacteria to feast on).

Here’s where the gluten-free diet fits into all this…

The most common sugar consumed in the standard gluten-free diet is sucrose (or table sugar). Sucrose is made-up of one glucose molecule and one fructose molecule bonded together to create a disaccharide (2 sugar molecules). Sucrose gets broken down by the digestive process into monosaccharide molecules to be absorbed by the gut.

Here’s the catch: the main “splitter” for these chemical bonds is the micro-villi, which we just discussed are damaged and not able to do their job. This leaves us with a surplus of sugar molecules hanging around in the intestine feeding bad bacteria (Read this article for in-depth info on the different kinds of sugar).

In general, the standard Gluten-Free Diet is primarily made-up of processed carbohydrates and processed sugars, which are mostly di- and polysaccharides that need to be “split” in the gut before they can be absorbed. Having a ton of undigested carbs and sugars hanging out in your gut creates the perfect recipe for digestive problems and SIBO…

SIBO Makes Your Gut Leak

Earlier in this series I pointed to the latest research suggesting that we can’t reverse the damage from Celiac disease without reversing leaky gut. So far, I’ve shown you how toxic defense mechanisms in gluten-free cereal grains create leaky gut and inflammation.

Inflammation and Leaky gut are also caused by toxins produced by bad bacteria…

Researchers have identified small intestinal bacterial overgrowth (SIBO) as the only other stimulus powerful enough to trigger zonulin release and create leaky gut the same way gluten does.[14] In fact, they theorize that the body responds to SIBO by opening up the tight junctions as a defensive immune response intended to flush the bad bacteria from the body.[15]

SIBO is an overgrowth condition that drives leaky gut syndrome and the Gluten-Free Diet is the fuel to feed the overgrowth. In one study, researchers took small intestinal biopsies from children with Celiac Disease to understand the role bacteria played in the disease. Their results were frightening: they not only found SIBO, but they discovered these children had 42 different rod-shaped bacteria, 30 of which had never been found in the human small intestine before… 18 of which were completely unknown![16]

Another study looked at adult Celiac patients that weren’t getting better on a gluten-free diet and found that, “SIBO affects most Celiacs with persistence of GI symptoms after gluten withdrawal.[17]

How can SIBO cause so much trouble? 

Pathogenic bacteria produce toxic byproducts that get released in the gut and the bloodstream, (like lipopolysaccharides – LPS). These toxins can severely damage the intestinal cell surface, triggering an inflammatory response as the body attempts to fight off the perceived bacterial threat and cause difficulty digesting and absorbing certain carbohydrates. They can also find their way into the bloodstream and wreak havoc on the liver.[18]

Not only that, but while they happily feed on undigested sugars and other carbohydrates that are supposed to feed you, they release gases like hydrogen and methane. The end result is gas, bloating, and diarrhea or constipation… and perpetually untreated Celiac Disease.

The Inflammation-Leaky Gut Cycle

The bottom line is: If you have Celiac Disease, you have leaky gut and bad gut flora.

We’ve talked about how prolamines and lectins cause inflammation and leaky gut. We’ve talked about how SIBO causes inflammation and leaky gut… and all within the confines of a gluten-free diet.

When your gut flora is out of balance and your gut barrier is damaged, your gut is going to be inflamed. Inflammation triggers leaky gut and leaky gut triggers inflammation.[19] They all feed on each other in a vicious cycle that looks like this:

leaky-gut-inflammation-cycle

The only way to begin treating Celiac Disease is to break this inflammation-leaky gut cycle… and the first step is to recognize that gluten-free isn’t enough. There’s a better way to eat that can begin to halt this process.

So, What Can a Celiac Eat to Feel Better?

The answer is: eat easy-to-digest, low-toxin, real foods – foods that don’’t feed bad bacteria or promote inflammation… but at the same time provide adequate nutrition and improve intestinal permeability.

In other words the ideal Celiac Disease diet:

  • Doesn’t contain processed foods filled with added sugars, vegetable oils, additives, or dyes that damage health
  • Eliminates disaccharides and polysaccharides to starve out overgrown bad bacteria (SIBO)
  • Eliminates the most toxic food groups: cereal grains and soy
  • Encourages consumption of low-toxin whole foods in their natural state
  • Encourages plenty of nutrient dense animal products filled with protein and healthy fats
  • Encourages plenty of good bugs (probiotics) through fermented foods or supplements

The Gluten-Free Diet doesn’t fit the bill…

Simply eliminating cereal grains that promote inflammation and leaky gut is a step in the right direction. But if you remove the other 3 toxic foods I mentioned above (soy, industrial seed oils, and sugar) you’ll be one step closer to recovery. At that point, you’ll be eating a whole food, non-processed diet – which is ideal for optimal health based on what we know.

Is that the same thing as a Paleo or Primal diet?

In our experience, a recovering Celiac does well to graduate to the full paleo/primal diet after focusing on healing the gut first. The recovery process starts by starving out the bad bacteria and helping the gut heal by removing normally healthy food that can be problematic. In general, the best results happened when foods are properly cooked and problematic foods are slowly introduced over time.

Before the discovery of gluten in 1952, Dr Sidney V. Haas proposed the theory of SIBO as the cause of Celiac Disease in his book The Management of Celiac Disease because he saw a benefit in treating Celiacs with The Specific Carbohydrate Diet (SCD).

The SCD diet is a form of low-carb paleo/primal that removes common irritants that are problematic in the Gluten-Free Diet, but it also limits the availability of carbohydrates as a food source for bad bacteria and starves them out over time. As the small intestine improves, Celiacs can begin to properly absorb nutrients again. The volume of sugars that are allowed to ferment in the digestive tract becomes less and the symptoms of bloating, gas, and diarrhea start to go away.

Create a Custom Diet to Heal Your Body

Lastly, the SCD framework starts out with simple foods that are easy to digest. Overtime you end up creating a custom diet that expands with more foods while you heal… eventually allowing foods that might not have been well tolerated earlier (like nightshades, eggs, nuts, or fermented dairy).

The bottom line: SCD was the only thing that finally stopped my Celiac Disease symptoms and started to reverse the damage to my body before I could even tolerate a paleo/primal diet. If you’re ready to take control of your Celiac Disease I highly recommend you try SCD for 30-days to see how you feel.

We created a free quick start guide to make it easy for you to start SCD. You can get it here:

–> Free SCD quick start guide

Starting a diet like SCD is the first step in reversing the damage from Celiac Disease… but lifestyle and supplement changes are also critical.  In the next part of this series, I’ll explain the necessary lifestyle and supplement changes you need to know about to properly manage Celiac Disease.

Here’s the next part: Why Everyone with Celiac Disease Desperately Needs Vitamin D

– Jordan

P.S. – Please share this with friends and family dealing with Celiac Disease or gluten intolerance. Thank you :-)

 

About the author

Jordan Reasoner Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn’t work. Since then, he transformed his health using the SCD Diet and started SCDLifestyle.com to help others naturally heal stomach problems. You can check out his story here and find him on Google+, Facebook or Twitter.

The Specific Carbohydrate Diet Works

{ 126 comments… read them below or add one }

Tracy April 4, 2012 at 8:08 am

Celiac formerly on SCD here! I can attest that gluten-free alone often isn’t enough, even if you’re NOT eating a SAD-style g-free diet. 6 years after going g-free (and eating mainly low carb primal/paleo) I started having more gut problems and a few other issues, which SCD helped resolve. Gut stuff, very tricky to figure out what works for you.

However – I will mention that, in my case, I benefitted from adding white rice to my diet (once my gut was better) in order to up my level of carbohydrate. My thyroid levels were functionally low, and antibodies functionally high – something celiacs need to watch for, as we tend to be more susceptible to Hashimoto’s (autoimmune thyroid condition) and apparently this can be aggravated by being too low in carbs for too long.

Gluten-free foods are starting to become trendy, and you’re right that in most cases, these foods are no better than other processed foods… best to leave them alone and stick with foods that are naturally gluten free – like a good steak and some veg! :) If you want a starch, white rice tends to be easier to digest than brown.

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Jordan Reasoner April 4, 2012 at 1:31 pm

Thank you for sharing your story Tracy, you rock!

Jordan

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Dawn November 29, 2012 at 1:05 pm

Hi Tracy. I was interested to read your reply. I decided to go on to Atkins for now 4 months. I was about 2 stone overweight and always bloated and constipated etc. Anyway over 4 months have lost about 18 lbs in total so far. But over the past two weeks have developed excruciating pains when passing solids. I dont have diarrhea but it is soft and when i need to go it is instant and very very painful with no straining at all. (feels like my guts are being ripped out!!) I eat low carb and gluten free etc as in accordance with the atkins diet etc. I am going for a test bloods etc to see what may be going on. Could it bee that I was Coeliac over the years and there has been damage? My stomach is constantly tender, i miss periods, I am 46 years old and have a mild form of spinabiffida that realy doesnt hinder my life much at all. I have also had mild skin rash for years like tiny bumps!!. I was interested to read that you felt better when you re-introduced some carbs back into your diet.

Any thoughts would be appreciated.

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Steven Wright November 30, 2012 at 8:39 am

@Dawn – It sounds like you have immune and hormonal dysregulation. I would seek a functional medical doctor. In the mean time switch your diet to SCD or Paleo and try digestive enzymes.

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julianne February 9, 2013 at 4:56 pm

You may also be suffering from problems associated with a vr low carb diet. Glucose is necessary for mucous production, and low mucous can cause gut issues. Check out Paul Jaminet on perfecthealthdiet.com. He has written extensively about the problems of very low carb diets.

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Jill November 23, 2013 at 4:28 am

My plan is to just eat God’s food–as it comes. I do the processing and control the combinations. Thinking of it as eating wholesome (get it “whole” foods) and His Way, not mine–not to be preachy, but my cravings and overeating, undersleeping, and poor health habits left practically overnight. DO be aware–do not fall back into your old behaviors–the brain likes this just like cocaine (I can FEEL my greedy receptors light up with a taste of sugar), so you can be “hooked” all over again with a teeny bite of food that’s not on God’s plan. I don’t want to think of food as “good” or “bad”, “legal” or “illegal”, but rather I want to do the best in a spiritual sense. Hope that helps the Christians and others out there that have a growth plan for their life!
Also, I think a word of advice is to not get on the slippery slope–well, we’re going for holiday dinner and don’t want to offend them. Take charge–you will be so abundantly and overwhelmingly full of joy!!

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Vlad April 4, 2012 at 11:58 am

Wondering what you think about white rice? Still a toxin?

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Jordan Reasoner April 4, 2012 at 1:30 pm

Great question Vlad. White Rice is probably the least toxic option of all the grains. It has been stripped of most antinutrients, lectins, and prolamines. It can still bother some people with severe autoimmunity… but that’s the not the biggest problem I have with it.

It’s probably OK to test out once SIBO is eliminated, but it’s essentially all starch, so in the case of SIBO it can continue to feed bad bacteria and promote leaky gut/inflammation.

Test it when the gut is healed :-)

Jordan

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Jordan Reasoner April 4, 2012 at 1:33 pm

Oh, I forgot – here’s a great article on Rice from Mark Sisson:

http://www.marksdailyapple.com/is-rice-unhealthy/

Jordan

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Mindy @ Too Many Jars in My Kitchen! April 4, 2012 at 2:14 pm

This is such important information to get out to people! I did the wheat- and/or gluten-free thing for so long, but was still eating so much processed food. I’m currently following GAPS, which is based on SCD, and have already seen so much improvement after just 8 months. I can’t wait to get my gut fully healed!

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Alex April 4, 2012 at 2:30 pm

thank you for providing this!

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roma rosborough April 5, 2012 at 5:58 am

Great article Jordan, very informative

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Arianna D. Royal April 5, 2012 at 9:25 pm

If you read this article, I recommend that you pay close attention to the assumptions; they are true for at least some (maybe many) gluten-free persons.

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Jordan Reasoner April 5, 2012 at 10:01 pm

Thank you Arianna – I appreciate that. You’re right, research shows anywhere between 30%-60% of Celiacs don’t get better on a GF diet. I believe that those that don’t get better on a GF diet need to do more :-)

I shared the data here:

http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/

– Jordan

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Ted April 13, 2012 at 1:15 pm

Well finally!! This is the first program I have come across with a market strategy that effectively outlines the major issues with the SAD and its effects on all disease but specifically digestive diseases. It is unfortunate that the majority of Americans have been fooled into thinking that refined processed grains and prepackaged meals are food! We have as a population been conditioned into a corner and it is up to the informed professionals and individuals to change the way the rest of America thinks. I have been studying diet and nutrition for the last year in Chiro school and what this web page says makes sense!! Hippocites said “let thy food be thy medicine and medicine thy food,” Edison said “The doctor of the future will give no medicine, but will interest her or his patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.” Perhaps we as a society and humans are finally starting to get the reality that we are what we eat! We are OMNIVORES; NOT GRAINOVORES. Our bodies are designed to digest food, unadulterated meat and vegetables; fruits and nuts on occasion. In Applied Kinesiology there are 5 fingers of death or foods that should be avoided when ever possible; wheat, dairy, salt, sugar and soy. So, now people panic what am I supposed to eat?! There is plenty to eat you just have to look at food differently. Thank you again for being promoters of heath!!

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Jordan Reasoner April 13, 2012 at 1:41 pm

Thanks Ted – great additional comments BTW.

J

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Julie April 13, 2012 at 3:51 pm

Jordan, I was diagnosed a month ago with celiac. I have been complaining for 30 years about my “stomach problems.” During those years I had all kinds of tests done and every time I was told I had IBS. I had a rash on my chest in my 30’s with blisters, the dr. told me I had shingles. I now know it was dermatitis herpetiformis, (it showed up again recently, had a biopsy done a few weeks ago, came up positive), I went gluten free on the advice of a friend on Dec. 9th, 2011, 4 months now, and I am allot better but not 100%, esp. since the DH is still active, but only one lesion at a time, not many. However, according to the statistics on mortality, shouldn’t I be dead by now? I asked my gastroenterologist to do the gene test. I have the DQ2 and DQ8 genes, I suspect my mother had celiac, (b/c of her complaints), it went undiagnosed and she lived to be 77 years of age. Your research is commendable but reading all this info makes me want to throw in the towel. I live in an area in Hawaii where there is a shortage of doctors, and my GP knows nothing about celiac, I will share your articles with her. However, I just go thru my day eating non-processed foods, which I have always done. I now make my own bread, and just deal. It is what it is. I think I’ll go to the beach and watch the sunset with a good gluten free chardonnay, and stop google-ing celiac disease.

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Steffanie April 26, 2012 at 11:10 pm

Loved your article. Thank you. Just wanted to shout out a recommendation for Sally Fallon’s book “Nourishing Traditions”. She teaches how to ferment and sprout grains before using them to get rid of the enzyme inhibitors that grains have to protect themselves. Also, the book was extremely helpful for me to learn about fermenting vegetables instead of canning them for preservation. Adding fermented beverages (like rejuvelac, and keifer) and adding fermented vegetables to my diet (like homemade kimchi, gingered carrots etc.) have been amazing to help heal my bloated gut issues after eating naturally gluten free products.

Thank you again for writing this great article! I should just repost this to my blog and simply say “amen”.

-Steffanie

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Katie June 10, 2012 at 8:22 am

I was diagnosed with coeliac disease when I was 13 years old, after no symptoms other than being underweight and having really bad acne. I stuck to a strict gluten free diet for 4 years, but at the age of 16 I began to develop nausea. By the end of the year, I was so sick I could barely get out of bed. I had dizziness, headaches, extreme, constant nausea and was always tired. I couldn’t go to school and there was a good chance I would have to be kept down and repeat grade eleven because I couldn’t keep up. I had been to every doctor and specialist and no one knew what was wrong. I had also come down with glandular fever, and was feeling miserable. My mum discovered the Specific Carbohydrate diet as a last resort, and after being on it for only one week I was feeling better. The glandular fever disappeared very quickly and as the days went on, I went back to school, got a job and even started going to the gym. I felt better than ever and every symptom vanished! I stayed on the diet for one year and it was the only reason I managed to graduate high school. I have been back on a relatively normal, (but still gluten free) diet for the past 6 months and I’m feeling well.

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constance July 9, 2012 at 11:26 pm

i made notes and thank u for this

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Ritinha July 14, 2012 at 12:09 pm

Hi,
I have been diagnosed with celiac disease in March and started the gluten free diet in April. At first, I could see the difference on how I felt – I had a lot more energy, the pains (joints, stomach, intestines, head) started to decrease and I was feeling extremly happy with the “new me”. Slowly, I started to become familiar with the gluten free options of bread, pasta, cookies, etc and introducing them in my diet and slowly I started to feel worst and worst. :(
Today, after feeling bad for the 3rd day in a row, I broke down and started crying and that’s when I found your article. :)
I have decided to follow your advice and I really really really do hope that I feel better soon. :)
Thank you for this info ;)
R

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Steven Wright July 20, 2012 at 3:19 pm

@R – Thanks so much for telling your story, hang around and give us an update after trying SCD for 30 days. Can’t wait to hear your progress!

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Margaret August 6, 2012 at 5:08 am

The Gaps Diet is wonderful too!

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Steven Wright August 6, 2012 at 12:45 pm

@Margaret – We agree (it’s basically the Specific Carbohydrate Diet after-all)! Thanks for stopping by.

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Heather July 29, 2012 at 4:03 am

I was wondering if it’s possible to be a vegetarian on this diet? I’m practically a vegan. I don’t like meat or milk (I vomit if I try to ingest either) and I have an allergy to eggs. The only things I do eat that aren’t vegan are cheese and honey. I’m a bit concerned that this diet will limit my diet to the point of making it unhealthy.

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Jordan Reasoner July 31, 2012 at 7:50 pm

Hi Heater, I completely understand what you’re going through.

We’ve had some experience fielding questions from vegetarians, but our material is not geared towards that lifestyle choice.

You can most certainly try our book and substitute out many of the meats for other items, but I will say when I’ve heard people have that reaction to meat they are typically dealing with low stomach acid. You might find this link helpful:

http://scdlifestyle.com/2012/03/3-tests-for-low-stomach-acid/

Here’s three links on vegetarian SCD that you can review today:

1) Read about Cheryl Cravino’s SCD Success story, where she was starting out as a vegetarian:

http://scdlifestyle.com/2011/05/specific-carbohydrate-friends-cheryl-cravino/

2) Listen to a specific question we answer about SCD and vegetarian in podcast 21 (9:34 The myth that a vegetarian can’t follow SCD and what to try instead of meat – especially in the beginning)

http://scdlifestyle.com/2011/04/optimize-healing-and-feel-better-faster-podcast-21/

3) Read the comments from SCD’er vegetarians Elizabeth and most especially Jenny in this podcast comments section:

http://scdlifestyle.com/2011/04/optimize-healing-and-feel-better-faster-podcast-21/comment-page-1/#comments

I hope that helps you.

In good health,

Jordan

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Mary Jo July 31, 2012 at 6:35 pm

Like Heather I am also vegan and am interested to see what you suggest. I was also diagnosed with Celiac and have been gluten free for years but am still experiencing issues. As of last week I cut out my daily oatmeal along with brown rice and some other things I thought were healthy to see if that would make a difference. I’ve seen some improvement but know that I will need to do more.

Thanks for all the great information. Really appreciate it!

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Jordan Reasoner July 31, 2012 at 7:52 pm

Thanks for the ping Mary Jo. I just left a comment with Heather that included three links to review about vegetarian SCD.

You can read the comment here:

http://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/#comment-49641

In good health,

Jordan

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Margaret Stone August 7, 2012 at 9:02 am

Jordan and Steve,
Hi again. I fully endorse the SCD; I went on it and it worked for me. My doctor last visit about 5 months ago, suggested that it would be o.k. to go back on simply a gluten free diet. Blahh! I got lazy and started buying cereals for instance (at great expense). I couldn’t help thinking as I ate this crispy, tasty stuff that it wasn’t very different from sugar flakes. I was so right. I hadn’t a perfect poop in weeks, so here I am getting back on track, following the intro diet for SCD. Once established, I’m never going back.
The quiz was fun. I had only 1 yes.

BTW what supplements do you reccommend/
Cheers,
Margaret

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Steven Wright August 9, 2012 at 9:42 am

@Margaret – Thanks for stopping by and sharing your story, it helps everyone! We have our reccommend products page for supplements here ->http://scdlifestyle.com/recommended-products/

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Myrna Pouyatt August 22, 2012 at 6:31 pm

I found the white rice thing interesting. I’ve been on a gluten-free diet for about 11 years, and was still having problems with gas, bloating and severe constipation. I had removed all the sugar out of my diet, but would occasionally cheat with potato chips, so called healthy ones, and white basmati rice. Then one day after eating a little rice I had an anaphylactic reaction. Scary! I haven’t eaten rice since. I’m happy on the SCD diet and yes my thyroid levels are low normal, but I don’t really have a choice with regards to low carbs, I just do better on a low-carb diet. My gut is still in need of healing. Thank you for this Web site and as soon as I get my social security I will be getting your books. I’ve read Breaking the Vicious Cycle about 10 times, and it’s good, but you guys are awesome. Thanks!

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Kim August 30, 2012 at 10:31 pm

My 12 year old daughter was just diagnosed with celiacs a week ago. Her gastro just told us to stay away from gluten and set up an appt with a dietician. The more I read the more worried I get. Is there severe/mild celiacs? I thought rice was safe?? Im feeling overwhelmed and under informed!

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Jordan Reasoner August 31, 2012 at 1:55 pm

Hi Kim, I can totally understand what you’re going through. I was right there too. The good news is that kids bounce back from Celiac Disease (once they change their diet) much much better than adults do, so she has a leg up on the rest of us.

If her case was really bad, with lots of diarrhea and malnourishment, I would recommend doing SCD for a few months. Otherwise, I would highly recommend she (and the rest of the family) try out a Paleo diet for 30 days and see how you feel. The Celiac genetics are highly correlated with parents and siblings in the same family, so it’s something to take seriously,

As you can see from this article I wrote, most gluten-free food is still junk food, and that’s why Paleo is a better choice for long-term health and wellness. Another great resource for the Paleo diet is Robb Wolf: http://robbwolf.com/what-is-the-paleo-diet/

In good health,

Jordan

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Stephanie September 15, 2012 at 12:39 am

First, I want to say how much I love the knowledge and support you are sharing with the world. Absolutely priceless! My situation is very unique and though I would briefly share my story.
Four years ago, after chronic long-term digestive issues (GERD, constipation, IBS), I was put on GF diet with a naturopathic doctor. Suddenly I felt amazing and that lasted for a few short months. Now, looking back, I know the downfall was the high carb/sugar “gluten free” foods I consumed, especially brown rice and baked goods. When the constipation got worse I just kept increasing fiber with all of special flours and grains.
One day, about 6 months after going GF, I woke up severely bloated and full. Suddenly I could not longer eat more than a few bites of food, dropped 20 pounds in 2 months and ended up in the hospital. It was then I was diagnosed with gastroparesis, a digestive disorder meaning the stomach no longer functions properly.
Just this past summer I also tested positive for a severe case of SIBO, which is what I think began all of this trouble in the first place, along with an intolerance to grains. If I could turn back time I would have not only gone gluten free but grain free as well, similar to the SCD diet! I want more than anything to have this work for me now but not sure if its possible with the small amount of fat, and food in general, a gastroparesis stomach can handle. For now, I rely on a feeding tube for 1/2 my calories and eat small amounts of real food throughout the day, including carbs such as rice and potatoes for extra calories. If anyone has any thoughts or is familiar with someone in a similar situation, I would love to hear from you. Thanks for letting me share my story :)
FYI, I actually work as a health coach teaching others how to improve their digestion with great results. Hard because I know what is good but stomach limits me in my own journey. Interesting how life works!

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Fred May 1, 2013 at 8:53 pm

Read all of the comments on this page. Took me practically all day. I am 64. I started having problems at about age 22 after a glass of wine. My penis burned like hell every time I urinated. My old high school doc, then my GP, thought I had a sexually transmitted disease and gave me antibiotics. Many years later in retropect, I learned that the antibiotics probably made it worse. Luckily, I hardly ever drank alcohol, due to the fact that I had Hepatitas A when I was 20, and the doctors thought I should never be a regular drinker. I soon learned that the few times I did drink, even just a sip, the rear lobe of my prostate gland would become enflamed, and swell up, a condition that would continue for months, sometime years. I realized that yeasted bread made me feel worse after I ate it, so I tried to reduce/eliminate it. Over the next two decades I developed lots of digestive problems and felt very weak and tired at times, but the prostate inflammation was by far the worst symptom, and kept me from starting any kind of serious relationship with a female.

I went to many urologists, in the beginning, but none had a clue. After almost two decades, I started reading books on the yeast overgrowth syndrome and must have read a dozen, the most popular being “the yeast connection” but my bible turned out to be “The Yeast Syndrome” by Trowbridge and Walker. It has a reference of foods graded in four “phase” groups, according to safest (phase 1 foods) to eat, to the most dangerous (phase 4.) As you may guess, you start with the phase 1, nicknamed the MEVY diet (Meat-Eggs-Vegetables-Yogurt) and should progress to phase 4, which I never really reached. The phase 2 and 3 foods will vary in safety depending on the individual.

It took me four years to get better, and I found a woman and got married and had two kids, now 17 and 8. But then I became severely chemically sensitive getting worse for a few years, starting in 1998, and for a few years following, went through OTC pain relievers for the migraine headaches chemical sensitivity gave me, each one becoming intolerable after a while in my digestive system, then Vicodin for about two years, until the side effects ripped me up, followed by antibiotics for a really nasty sore throat (doc talked me into it.) That’s when my yeast overgrowth problem came back with a vengence, and I have been struggling with it ever since.

That was about 8 years ago. I started wearing a mask everywhere I went and that helped me tremendously live with the chemical sensitivity. Three years ago I gave up gluten and found it easier to get rid of the yeast problem, although I started to have some other problems with my frontal prostate lobes and sexual activity was getting very abnormal. Also, about three years ago, I started having problems with my urinating at night, like what is common men my age, BPH, but thinking it was just related to my rear lobe prostate problems from the yeast, I put off going to the doctor. It got so bad I could not urinate and started using catheters. The doctors suspected I had cancer but I simply could not believe it. I lived healthy and never ate junk food. But when I started getting blood with the self-cathetering, I realized I would never urinate naturally again until I had some kind of surgery.

The urologist used a scope to look inside but he was not very careful and ruptured something and I started bleeding in my urine. The blood accumulated clots in my bladder that clogged my catheter, clogged my ureters, and congested my kidneys. This made me think my kidneys had permanent damage.

I got a TURP a few weeks later (about a week ago) and they found out I had a very aggressive cancer in my prostate and it reached my pelvic bone. They put tubes in my kidneys to relieve them and I urinated into two bags. The kidneys are improving and at least one seems totally normal already. A week later now the TURP incision has not healed, and still bleeds a little.

But that is not my most immediate problem that threatens my life. At first it was the kidney congestion that caused me to lose weight, while I was still eating. In the stress and chaos of the hospital and the surgery, I abandoned both my anti-candida diet, and my gluten-free diet for a few days. I continued to get awful stomach cramps and bloating and gas. This morning I realized that I may have developed full-blown celiac disease since I gave up gluten three years ago. So today I spent most of the day reading the posts here, and today also went on a strict MEVY and gluten-free diet. I feel better already. I just hope it is not too little too late. My lean weight is 130, and I am now fluctuating between 105 and 110 lbs. mostly lost in the last two months. Antibiotics have not helped and I hope I don’t have to take any more with these procedures if I get infections while trying to correct all my problems. The doctors are upbeat about beating the cancer, or at least arresting it. They are starting hormone therapy, but that is not important if I die sooner from malnutrition. They don’t seem very concerned about that.

Reading this website and all the stories may have saved my life if it is not too late. The only thing that turns me off about the SCD program is the grape juice, which is phase 4 and one of the sweetest juices. That is something that would be instant death for me with the yeast overgrowth problem. Sorry, no offense. But otherwise, everything else seems to make perfect sense. Thanks.

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Steven Wright May 2, 2013 at 8:42 am

@Fred – Welcome, It’s never too late! Our goal is for you to create the custom diet that works for you. We think you should test every food and if you have some kind of test or experience that would indicate a certain food like grape juice is a really bad idea. Don’t try it. And if you do use the 4-day rule that we outline in our eBook. Good Luck and keep us updated!

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shelly September 18, 2012 at 6:35 am

Check out the Wheat Belly book by Dr. William Davis – It’s about living wheat/grain/sugar free and low carbs – check out the wheat belly facebook page and post any questions

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Steven Wright October 3, 2012 at 7:18 pm

@Shelly Wheat Belly is a great book! Couldn’t agree more.

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Fitness Wayne | Strength Training, Weight Loss and Paleo Health Blog September 18, 2012 at 10:50 pm

Great article, I agree with everything you say since I follow the paleo diet. I didn’t realize that gluten could cause leaky gut for up to 6 months, I had heard it was only 2 weeks. Or is it 6 months for celiacs and 2 weeks for us normal folks?

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Jackie October 7, 2012 at 12:44 am

This is what I’ve been wondering about. I’ve had it in my mind that SCD was supposed to be a temporary diet – around two years – to heal and seal the gut. Then one would be alright to slowly introduce starch back into the diet, while staying away from processed/toxic foods, still maintaining a healthy diet. But maybe some individuals just can’t do that – can’t ever introduce it and need to remain SCD for life. Would you agree? I was going to ask Jordan if he plans on SCD for life. And would there be any drawbacks to a lifelong SCD diet? Thanks guys! Also, random topic: have you discussed Dermatitis Herpetiformis on the blog yet? Our 7 year old Celiac just started showing symptoms and we’re fearing what this may bring.

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Steven Wright October 9, 2012 at 1:25 pm

@Jackie – Yep jordan eats “Safe starch” these days and so do I. Some people are finding that do the level of damage that happened when they got sick that they never really stray from SCD and others build up to a WAPF style diet. I think it’s a personal decision based on your health and lifestyle.

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Scott October 7, 2012 at 9:09 pm

Our food supply is totally unacceptable. Even the skin care products ALL have toxins that affect hormones and trigger other sensitivities. I am glad to have found a group that has gone back to doing the land correctly and will ship direct to our doors. I have not found any other source of REAL food, not formulations, that is done 100% without compromise. Begin your own research now and discover for yourself. Mark TastyFit.net as a favorite, then go do your researching.

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Jacqueline K October 21, 2012 at 2:05 pm

Now…I want to totally cry! I gave up all dairy/milk products YEARS ago because of an added ingredient, Carreegan (red seaweed, used as a thickener). I started to learn to like soy and now use it faithfully…but now I see it might be added back to my issues. I am adopted and have suffered with gut problems for years. In 2000, a doc. ran a camera down my throat and came back saying i have a “slow stomach” that does not digest food fast enough causing my bloating, gas and just plain bad health! I have gone through many, many, many diet, cutting out foods and still I suffered. A friend of mine told me about “Wheat Belly”. I read it and decided to give it a try and boy did I feel better, dropped weight and actually started looking my age, not older. I was hoping this was the issue (I have not insurance, can’t afford the tests). It’s really hard to stay with it, but i have. To add to the mess, I am going through “Menopause”…and an taking hormones. I was told me drinking Soy was great for that…but…now I see it’s bad for the other issue (gut problems)…SO now what???? (56 yrs old and confused)

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Jordan Reasoner October 21, 2012 at 8:10 pm

Hi Jacqueline, I feel for you, but I know you’re strong and you can handle this.

I’d highly recommend you try either the Paleo diet or the SCD Diet for 30-days and see how you feel. I bet you’ll never look back. Use our free quick start guide or others from guys like http://robbwolf.com

I believe in you!

Jordan

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AliB October 22, 2012 at 3:51 pm

Back in 2008 I started and supported what ended up as a huge thread on the SCD on a predominant Celiac forum. Constantly I was harangued by certain individuals and monitored like Big Brother, but those of us on the diet recognised the need for pure unadulterated foods for healing and the thread was good support. The mainstream understanding of the SCD was in its infancy and support was limited. I felt that rather than confining my contact to an SCD forum or list, that running it on a Celiac forum would hopefully reach a wider applicable audience.

I recognised early on in my Celiac journey that my body could not cope with any carbs, and the incessant responses by others on the forum complaining that they weren’t recovering on GF foods, or were now reacting also to other carb foods was enough to convince me that just going GF wasn’t the answer for most. Unfortunately, because my comments had been moderator limited to the SCD thread and nowhere else, others with Celiac and extreme gluten intolerance were unable to get the benefits of the diet unless they chanced on the thread. In the end the oppression became intolerable and I left the forum.

It is very sad that so many people suffering with awful Celiac issues were not given the opportunity to understand this. I knew that eventually the natural diet would win out – more and more people, like William Davis (Wheat Belly) are recognising that it is only by consuming natural foods people stand any chance of recovering. But when sites are funded by the very foods that are contributing to recovery limitations, loyalties are divided.

Although the SCD helped me, I found that my digestion couldn’t even cope with the honey and yogurt so had to drop those. Two years later I embarked on a similar but even lower-carb, high fat healing diet that added in supplements to aid healing and have gradually been improving. I still have a way to go but my digestion is heaps better than it was and I can cope with some non-gluten natural carb now. It’s taken over 4.5 years, but as I was 51 when I started I had a long history of damage behind me to recover from.

It’s extremely gratifying to see this and other blogs, forums and networks popping up in support of the SCD and other similar diets that help the body heal. Well done.

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Steven Wright October 23, 2012 at 11:30 am

@AliB – I know you’ve helped lots of people! Keep up the fight, it’s still young and worth it. Hopefully you’ve done some extensive tool testing to check for parasites, yeast and bacterial overgrowth. Many celiacs due to doctor ignorance do not get checked for these infections because as soon as CD is found they are assumed to be “diagnosed”.

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Linda October 23, 2012 at 1:10 am

I just wanted to say first off I’m sorry Jordan for the loss of your mother. That must have just been horrible.CD is a horrible disease and I…well it is hard to admit but I am not well. I’m scared at only weighing 101. Been in a wheel chair now for almost two years. Got real sick about three years ago with bleeding ulcers. My heart rate would go up to 170 bpm from the massive gas attacks! Heart also checked out fine but gosh it was horrific.

After this Passover I got even sicker, was in bed for weeks. So much pain I could not even move my arms. I had to literally, wear those hot packs (the kind you shake) one on each side stuffed in my underwear, I even slept with them. I could not even get in the car and take a short ride for 12 weeks I was in so much pain.

Finally went to the doctors and upon just seeing me he put me in the hospital. Ran all kinds of test and said the ulcers were healed. Extremely anemic at 8.4, low potassium along with elevated liver enzymes. That doc told me to eat like normal people that it was all in my head. So I went low carb with get this…whole grains! Even Atkins with their first ingredient “Wheat gluten”. So of course, I got sicker! Kept telling myself that doc said I could eat whatever I want!

Followed up in April with the GI and he said those words, you got CD. First six months have been nothing but trial and error of working out all the kinks such as dental floss, shampoo and even paper plates! When I would accidentally eat wheat in something it would feel like I ate glass about 3 to 4 hours later just tearing my right side up! Before I never knew what that feeling was all about but now I do.

I can’t eat much at all and this has been going on for almost three years. I was eating mostly baby food but that was on the same lines so this is what I can only eat: (now I’ve been eating the same thing day in and day out for months and I just don’t know how much longer I can go on like this. I mean think of what this is doing to my mind?)

watered down unsweetened apple sauce with soaked over night raisins
boiled turkey with boiled carrots,celery
boiled turkey with boiled carrots, green beans
then for a treat plain pancakes.

I admit I need help and yes I’m scared. My family has gone gluten/wheat free with me but I help cook their foods and they eat all kinds of yummy stuff and day in and day out I eat the same ole same ole. There is no sense in me going to see a dietician cause I can’t eat much.

Any advice would be greatly appreciated it. Especially how does one start to add foods into their diet.

Oh and actually I’ve only been gluten/wheat free for 4 weeks! I do have more energy and am participating in cooking more with my daughter. I don’t want to just get by anymore I want to live again!

thanks

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Steven Wright October 23, 2012 at 11:24 am

@Linda – I’m sorry to hear about what has happened to you but happy to see you on the site, welcome! Have you downloaded our free quick start guide at the top of the page (and or buy our eBook)? I’d suggest you start here. It’s the program that has allowed Jordan to rebuild his health and 1000s + since. You need to do drastic measures to lower your inflammation, toxins and start rebuilding your gut.

Digestive enzymes and probiotics would likely help you out as well. Hang around the site there’s a ton of info here to support you.

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Linda October 24, 2012 at 8:24 pm

Thank you for your reply and showing compassion. Seems way to many people are suffering all sorts of crazy digestive issues. I had no clue you all had a book and yes I will read it. Hopefully, this will help me. When I was reading some of the testimony’s I noticed we are practically neighbors (I’m close to Jackson). I’m really impressed with some of the awesome stories I have been reading. So I have hope even in my current condition! Thank you so much for all your hard work in helping others! May you be blessed greatly.

Thanks,
Linda

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Jordan Reasoner October 25, 2012 at 12:42 pm

You’re so very welcome Linda, you rock!

Keep us posted on how you’re doing.

Jordan

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AliB October 23, 2012 at 7:49 pm

Linda I feel for you. I too was in a terrible place 5 years ago with awful, awful gas and bloating. It felt like everything in my chest was trying to climb out through my throat! I would have to get out of bed every 10 minutes or so and jump up and down to try and release the gas as my esophagus was kinked with the pressure and the valve wouldn’t open properly and I was getting little or no sleep. Everything I ate was just running straight through me, and I was being told by the medical profession they could find ‘nothing wrong’!!! My diet was extremely restricted.

I don’t know if I had ulcers, I even wondered if I had pancreatitis, but no one was testing for these. I was banging my head against a brick wall in frustration.

After all this, left to my own devices I researched and researched (thank goodness for the internet!) and finding the gluten/Celiac link switched the light on. I remembered that my Mother had been tentatively diagnosed with CD just a few weeks before she died of multiple organ failure in 2000. The more I investigated, the more I realised that she has basically been murdered by undiagnosed CD. And I realised that I too had been heading in the same direction.

She had been anaemic all her adult life, had type 1 diabetes from the age of 15, and major fertility issues (me followed by a stillborn, followed by 10 miscarriages/spontaneous abortions – all highly symptomatic. She didn’t get the more obvious gut issues until around 5 years before she died – and STILL they missed it. In the end her body just devoured itself due to a lack of nutrition because of the malabsorption.

I am so glad for you that you have found a path to healing. So many don’t. What I will say is that although the SCD is a good diet, there are some who would be advised to not even include the allowed carbs like honey and pumpkin etc., at least until healing is further along. I know that my body couldn’t cope with them for quite a while – nor nuts also. After about 18 months I could add back in some carbs. I wonder too whether something like kefir might be a better option than yogurt as it has a broader range of good bacteria that can help the gut heal (it’s cheaper than probiotics too and supplies good sources of vitamins and minerals plus glutathione, which is very healing. Most that are lactose intolerant find they can cope with milk kefir). I found it gave me diarrhea after a week or two of starting it, and others have found that too, but that is likely a detox thing as it helps to clear out the garbage and should eventually stop.

Just as the degeneration occurs over many years, the healing takes time too. It’s not a quick-fix, but eventually things do improve, and hopefully you will find your weight normalizing too. I wish you well in your healing journey.

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Jordan Reasoner October 24, 2012 at 2:24 am

Thank you for sharing your story AliB – it reminds me of the same story that took my Mom from us early. I shared much of it, I’d love to have you read it, I’m sure you’ll relate all too well: http://scdlifestyle.com/2012/01/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/

In good health,

Jordan

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Linda October 24, 2012 at 9:04 pm

Dear AliB,

Thank you so much for sharing. I’m so sorry to hear about your beloved mother.How devastating that must have been for you. Then my heart goes out to all the pain she had to endure, very sad indeed. I don’t understand how so many have to go years and not knowing what is wrong with them and then sadly their bodies just can’t take it anymore. Then others still suffer for years before they find anything out. Being’s I am a mother of 3 and am (42) I want to stick around for a while you know?

I don’t understand how they could not catch the CD in your mother. For her to have multi-organ failure she must have been really sick. It makes me so upset to hear how this gluten wheat can cause so much havoc on ones body, it is beyond my comprehension!

Oh my, I can only imagine how scary that must have been for you. It is horrible what gas can do. At one time, this is the truth and am embarrassed to say it…but I would belch anywhere from 700 to 1,000 times a DAY! Yes, we counted it. When the ulcers were bleeding I belched for four days straight. I could not eat anything and then the pain. The doctors wanted me on their drugs but I refused. We used herbs and it took 10 months to heal. I still belched more than normal and ate easy to digest food.

We took a vacation first in years to FL. Sadly on the way home our truck broke down on the highway and my 21 year old daughter got out of the truck and was struck at 65 miles per hour. She is a miracle but has major issues (60 seizures a day amongst a host of other issues).

The stress of seeing her get hit, sparked the CD! And I’ve been in a mess since.

Now when you mentioned everything was going through you (I’m so sorry that must have been so painful) were you still eating the wheat/gluten? I’m sure you were so wore out. I had the constipation then diarrhea.

Yeah, every time I’ve been checked for iron always low.

I’ve sat back for six months just reading different posts from different websites and this is the first time I’ve ever spoke out. So hopefully, the knowledge I gain here will greatly help me.

Wow, that is horrible about the miscarriages, I’m so sorry!

No honey for me right now. It has been a very long road but hopefully will get better.

Yeah my favorite food is almonds, the flour the butter but I had to go off of it as it was just causing to much gas. Now for me, probiotics cause so much gas that right now I just don’t think I am even ready for that. Kefir, I have not had dairy for a very long time either.

Yeah I really want to gain weight! 101 is scary and I just don’t know what to eat to help put the weight back on. I mean I took the almonds away, I took the BRM gl/wf oats away (I really liked that) and if I could only find something to put some weight back on, I would be very happy!

Thank you so much for caring.
By for now
Linda

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turnip November 5, 2012 at 12:39 pm

Hey AliB,

I can totally relate to what you are saying. I would love to connect and compare notes!

Turnip

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Tara October 26, 2012 at 11:00 am

What if you are vegetarian?

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Steven Wright October 26, 2012 at 2:48 pm

@Tara – Vegetarians seem to have a very hard time avoiding the toxic foods in our society. It’s not that it cannot be done just that most people don’t have the money or discipline to do it. I love vegetarians because in general they are very conscious to health, animals and the planet. Unfortunately most would be better served and create more of the consciousness they crave by eating sustainable and ethically raised animal products -> http://scdlifestyle.com/2012/10/30-year-vegetarian-remedies-constipation-skin-rashes-and-joint-pain-with-scd/

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Jyran October 26, 2012 at 7:29 pm

Should nuts and seeds be avoided as if they were grains? Do they contain prolamines? Or if they are soaked and sprouted (getting rid of the phytic acid) are they digestible?

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Jordan Reasoner October 27, 2012 at 1:18 pm

Hi Jyrna, I think they should be avoided until Celiac’s heal up. In the past three years I’ve tested them repeatedly and each time they give me digestive problems and increase my inflammation. I’m not sure if it’s the anti-nutrients you mentioned or if it’s more the omega 6 content, but they cause a lot of issues for me.

I’m optimally healthy without them. Hope that helps,

Jordan

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solomani December 4, 2012 at 4:12 am

All legumes should be dropped – so peanuts are no go – nuts generally are overused in paleo circles. I know Mark Sisson warns against this and I fell into the same trap of replacing snack food like chocolate with nuts thinking they were healthier. Nuts should be eaten in moderation. They are fine but be aware of the omega-3 content. Macadamia’s are probably the best of all the nuts in terms of Omega-6 to Omega-3 content while Brasil nuts are the worst (though they are a great source of psy-?). Moderation is your best bet. If you cant moderate eliminate it at least temporarily.

If you are going paleo you shouldn’t be snacking at all. I know when I fully switched I snacked out of habit not need or hunger. Have bigger meals (high-fat, moderate-protein, low-carbs where low-carbs is 10% of calories) and ignore the cravings. They will pass.

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Jordan Reasoner December 5, 2012 at 2:18 am

Great points Solomani, thanks for reading the article :-)

In good health,

Jordan

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marie November 7, 2012 at 10:19 pm

Hi there, does manna bread (sprouted wheat bread), which is very moist and heavy, more cake like than bread like, does this behave in our body the same as all the other grain products? For some reason because it is sprouted, I thought that it was a healthy alternative to the typical bread products. Thanks for your help.

Marie

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Jordan Reasoner November 9, 2012 at 4:39 pm

Hi Marie, that’s a grey zone. Some people can tolerate it, but it does have some degree of toxins even though it is sprouted. If you have gut issues, it’s probably a good idea to avoid it and test it later when your gut is healthy.

Jordan

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biggi November 15, 2012 at 9:25 am

I just wanted to say i’m glad to read this… i’ve been on a GF diet since 2007 and have had so much health issues still. Since 1 year we are eating low carb, Grain free, gluten free. more towards a primal/paleo/low carb diet. Since then it’s finally become a more livable lifestile again.
i’m glad to know a bit more backgrounds to it though.

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Jana Gill November 25, 2012 at 11:30 am

So, is there any hope for a celiac sufferer who is also a long time vegetarian? I’ve only been on GF diet for a year (late diagnosed), and I do feel better, but still have gastro symptoms. I eat a lot of veggies, and not a lot of processed foods or sugar, but if I eliminate soy along with wheat, my protein consumption would be pretty low.

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Jordan Reasoner November 25, 2012 at 4:07 pm

Hi Jana,

We’ve had some experience fielding questions from vegetarians, but our website is not geared towards that lifestyle choice. Here’s three things you can review today that will help you:

1) Read about Cheryl Cravino’s Success story, where she was starting out as a vegetarian:

http://scdlifestyle.com/2011/05/specific-carbohydrate-friends-cheryl-cravino/

2) Listen to a specific question we answer about SCD and vegetarian in podcast 21 (9:34 The myth that a vegetarian can’t follow SCD and what to try instead of meat – especially in the beginning)

http://scdlifestyle.com/2011/04/optimize-healing-and-feel-better-faster-podcast-21/

3) Read the comments from SCD’er vegetarians Elizabeth and most especially Jenny in this podcast comments section:

http://scdlifestyle.com/2011/04/optimize-healing-and-feel-better-faster-podcast-21/comment-page-1/#comments

I hope that helps you.

In good health,

Jordan

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solomani December 4, 2012 at 3:37 am

Where does einkorn fit into all of this? The one and only food (that I have discovered) that has a direct bearing on my ulcerative proctitis is wheat – if I eat it, I bleed, if I don’t the bleeding abates (but doesn’t go away). However testing einkorn I find I don’t get a response nor does my blood sugar shoot up. And recent studies have found einkorn is well tolerated by celiacs – no inflammation.

Now einkorn is still wheat and I know there is a big difference between einkorn and common wheat (modern) but they still both have gluten and gliadin so why does einkorn not hurt celiacs or cause issues with other IBDs? There is something else going on here its not just gluten and its not just prolamines.

Finally doesn’t SCD also starve good and bad bacteria ultimately? Or are good bacteria just hardier?

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Jordan Reasoner December 5, 2012 at 2:18 am

I wouldn’t recommend Einkorn. Grains promote inflammation, even if it’s not as strong as your wheat reaction, my point of view is that it needs to be cut out if you want to take control of your IBD.

SCD does starve out bad bacteria where it’s not supposed to be (in the small intestine). After that point, eating things like fermented foods can help restore healthy flora in the colon.

Jordan

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solomani December 5, 2012 at 3:01 am

thanks Jordan. Don’t get me wrong, I don’t eat einkorn regularly. I was self-experimenting at the time. I guess older wheat just doesn’t carry as much anti-nutrients as modern wheat (or its more easily flushed out).

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Chris December 6, 2012 at 10:41 pm

I think the fact that things like wheat, corn and soy are all genetically modified and that so much of our food contains herbicides and pesticides also has to be addressed. These are some of the biggest causes of leaky gut.

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Chris December 9, 2012 at 5:19 pm

So, according to this… you need to choose the lesser of all evils or perhaps live in fear of most foods? It’s true you need to look up your own information, learn about what YOUR body needs, and eat your own specific diet. I do think inserting a comment like “Gluten-free cereal grains are waging war on your gut” and “Eating gluten-free is usually toxic”. There are many things you can do, like read labels and continue to stick by eating healthy, but those blanket statements are simple misinformation. True, not all gluten-free products are healthy, they are simply wheat or gluten free. Eating gluten free chocolate chip cookies is NOT going to make you healthier. The issue here is that most people are misinformed because someone who claims to be an authority posts some facts and directs them toward their own biased opinions on foods. I mostly cook for myself. I was 250 lbs (6’1″) and am steady and healthy at around 165 lbs. It took me about 4 months to lose the first 40 lbs, and the rest was very steady over the next year. This is not unhealthy weight loss, though you need to be aware of your blood sugar, your exercise and your own “food pyramid”. The FDA allows labels that state Gluten Free when there are still trace amounts that are mostly undetectable. Unfortunately, a single article on the internet is not going to give you all the information that you need. It took me 3 years to find the correct information, the diet that suited me, and it started with the decision to stop messing myself up and take my life seriously. Gluten is bad for you, is difficult to digest and so are other foods that we assume are “okay”. I’m still learning. I don’t base all my information on studies or certifications, either. I’ve heard people with such credentials stating there is “nothing wrong with gluten”, so it would do you some good to keep looking and learning.

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Jordan Reasoner December 9, 2012 at 8:25 pm

That’s an interesting point of view Chris. Thank you for sharing.

In good health,

Jordan

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Naomi December 13, 2012 at 4:20 am

Hi Jordan, thanks for this article it has certainly given me a lot to think about. What are your thoughts on Chia seeds? I have them for breakfast with a big bowl of fruit, which also brings me to my next question, is eating a lot of sweet fruit also to much strain on your digestive system?

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Steven Wright December 16, 2012 at 8:02 pm

@Naomi – We aren’t huge fans of Chia seeds but if it works for you then keep doing it. Yes too much fruit doses seem to hurt some people.

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Anni December 14, 2012 at 5:08 am

The best I was ever feeling after my diagnosis was when I was on a no-gluten, low-carb (no grains of any sort, no legumes, no potatoes, no fruit), no-dairy, high-vegetable fat (nuts, seeds, olive oil) diet. I didn’t eat any processed foods, and I still don’t. My meals were based on a wide variety of vegetables and nuts.

Could it be that the reintroduction of fruit into my diet could have caused my problems to start again? I’ve also reintroduced cheese but I have the impression that it really is fruit that messes my digestive system up (causing bloating, constipation). Could that be? I do eat quite a lot of fruit, and I wonder if a lot of fructose is actually bad for you, too. Any insights on this?

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Steven Wright December 16, 2012 at 7:56 pm

@Anni – it could be. You might have blood sugar regulation issues, a GI infection that the sugar is feeding or hormonal imbalance. Only testing could tell.

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Keith Wolff December 18, 2012 at 12:37 am

To Steven and Jordan –

When I have more time I would like to give my full story, even though it is similar to the stories I have already read here. The short version is, I developed what at first appeared to be a bladder/prostate infection that would not go away. I could hardly sit at all for very long periods, and I work in inside sales. While this was going on the SIBO I had been dealing with off and on for 4 years came back with a vengeance, likely due to the 8 weeks of sulfur antibiotics for the bladder infection that wasn’t. It turned out that the supposed bladder infection was really an inflamed pelvic floor muscle. This inflamed muscle was due to higher cortisol levels due to Celiac. I went through one gastroenterologist, one endocrinologist and one urologist before engaging some fantastic physical therapy for the pelvic floor muscle and a great homeopath at People’s Rx to get on the right rode to diagnosis and healing. This stuff hit me like a hammer almost overnight. I am now on a very low dose of thyroid med after having trouble tolerating it. Thyroid meds appear to be a tough thing to incorporate into one’s system, but doing well now. I also had VERY LOW testosterone, which appears to be returning with good thyroid therapy. I knew I was sensitive to gluten but I don’t understand how I could have been virtually symptomless and then hit so hard with it. I never suffered from diarrhea but constipation instead. It is better but certain things seem to make constipation rear its head, like coffee/caffeine etc. I am taking a lot of supplements such as VSL#3, Intestimine, liquid D3, topical vitamin B puddy, HLC Probiotic, which I highly recommend, and Magnesium Glycinate. I am easing off of some of these supplements. There were others I no longer need. When I met the homeopath the first time I handed him my endocrinology blood work. He could not believe what I had been through. I lost 27lbs. in three months, the gastro doc was killing me slowly with the antibiotics to attack the SIBO. After about four months of treatment I got a LOT better, even stopped the thyroid support, but I began to go down hill again rapidly, bloating returned, SIBO returned. During this time I developed heart palpitations due to several reasons, too low magnesium, too low vitamin D, low thyroid and what the homeopath termed, excitotoxic reaction. This was the biggest reason. If I ate carbs I would have palpitations within about 45 minutes. He said my healed intestine would have to develop a tolerance again, which I am happy to say, the palpitations from all causes have now ceased, and I am glad because they could be rather scary at times. I came across a couple of other people who experienced the same thing.

My downward spiral lasted for about 5 months, then I found this website with the SCD diet and realized that I had been healing a lot, but with that healing my intestine began to react to all of the other grains, which sent me down the hill again! So frustrating! When I started the diet it helped almost immediately. I am hoping to add rice and corn and dairy back at some point, I can tolerate milk quiet well occasionally but I am not pushing it. I miss mexican food.

Here is where I could use some input and experienced perspective. I think that I have figured out that what sometimes seems to be bloating is really inflammation. Mine always seems to occur in the evenings. Now that I am on the SCD diet the bloating has stopped. For the most part bowel movements have returned to normal, but it seems that constipation creates bloating which seems to also lead to a cycle of inflammation. If I take the supplements like Intestimine, which is for inflammation, I obtain a flattened stomach within a 1/2 hour. Would you agree that this is indeed what I am experiencing?

I currently see the leading gasto doc in Austin, Texas. He says he does not think I need steroids if I can control the inflammation without them, but that I could deal with inflammation off and on for up to five years.

As I understand it, the key to getting my thyroid to functioning on its own is to eliminate grains from my diet AND keep the inflammation at normal levels.

Also, did I understand that vitamin D can promote inflammation? I have to have this as I don’t absorb it well.

I know this turned out longer than I intended, but it is SO good to find a forum that can understand what I am going through AND offer support when this road to healing gets long and hard. I am returning to the fitness center again after a false start a year ago. I am determined to put the majority of this behind me in time. Thanks!!!

Keith

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Jordan Reasoner December 18, 2012 at 7:48 pm

Hey Keith, it sounds like you’re working had on your health and that’s awesome man! You’re making great progress and it’s not unusual to get stuck where you are.

I’d highly recommend you look into your HPA axis with a saliva cortisol test. When I see immune dysregulation like that, it suggests to me you could be in Stage 3 adrenal fatigue and your cortisol levels are actually really low.

Email us at jordanandsteve@scdlifestyle.com if you have more questions about a private consult.

In good health,

Jordan

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Dolores December 20, 2012 at 4:27 pm

Thank you for all the down to earth information.
As a 60 year old woman newly diagnosed with celiac and leaky gut do you recommend the Paleo diet or SCD. This article is an oasis in a desert as after being GF and eating mass quantities of veg I would still have stomach aches — sometimes after something as simple as water. The doctor thought I was just ” depressed ” and suggested an antidepressant as the solution.

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Jordan Reasoner December 22, 2012 at 12:29 pm

That’s a great question Dolores. I would start with SCD and as you heal, graduate to full Paleo over time just like I did. It took me a few years to get to full Paleo, but others have done it much faster.

In good health,

Jordan

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Martin December 21, 2012 at 12:14 am

Would you agree the advice to celiac sufferers should be to follow the basic paleo diet principles:
1. do not eat processed crap
2. do not eat what your grandmother would not recognise

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Jordan Reasoner December 22, 2012 at 12:31 pm

Yeah I think that’s a great point. The problem I see is many Celiacs that are severely ill like I was, can’t even tolerate full paleo at first. But with some healing, they can graduate to full paleo. It took me over 2 years to tolerate full paleo. That said, I still don’t tolerate eggs ha-ha.

Jordan

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Lorna December 28, 2012 at 1:11 pm

Hi Jordan and Steven,
I have just discovered your site today and am so happy to be able to read such wonderful ideas and theories to work with.
I have been googling for diet and test information on and off for probably 4 years. There are so many different problems, that most GP’s don’t know alot about alot! They may tend to have some area of expertise but as you say they can’t be up to date with all new information at hand. I have changed docs a few times trying to find someone who cares enough to investigate, but so many just want to prescribed ‘bandaids’ for the symptoms and don’t persist – or know how – to discover the causes. I have sometimes found information that has been very helpful in trying to work out my health issues as the GP often don’t have any ideas of what else to do.. (not good enough)

In hindsight I can see I have had health issues since I was a child but never really diagnosed in any way, other than glandular fever at 8yo, until I did breathe tests about 3 years ago. I had already taken my self off wheat about 4 months before that and had noticed a great improvement then, but as you, and so many others say, symptoms then changed and it gradually got worse. My energy levels and tolerance to foods is even less than ever at the moment. I have worked alot out that the docs didn’t even mention to me such as the low vit D levels. A terrible ignorance of it’s importance here within the medical world. To think I have seen probably 3 GP’s, a gastrointeroligist, a rheumotologist and a dietician. Yet no one ever mentioned increasing my Vit D. I have noticed quite a few numbers on my bloods out of the range that have been ignored, which has led me to the googling for answers – or questions. That’s how I accidentally found the DQ2/DQ8 tests as I have been off gluten since before my blood test said I wasn’t coeliac over 3 years ago…. and unfortunately I had already had the gastroscopy (opting for no anaesthetic…fun!) but they had NOT bothered to do the biopsy test then. As I really don’t want to have to eat gluten for 6 weeks I have just been saying I will presume I AM. and now the DQ2/DQ8 tests show I am a likely candidate. My Dad died of cancer at 55, I believe after what I have read today from so many that he probably had undiagnosed CD too. He had so many other ailments that fit the bill.
I have been diagnosed with Lactose Intolerance, Fructose Malabsorbtion then Fibromyalgia. And as much as I was happy enough for that ‘label’ to be attached to me in an aknowledgement that there WAS a problem… it didn’t help to FIX the problem as that ‘grey area’ is basically ignored. Even if Fibromyalgia is actually something, (which I don’t believe, I believe it will eventually be split into more known diseases once we learn more) I know there is a REASON for it, a cause and I feel most health issues, if not all, are diet related. The dietician sent me away over a year ago, saying you need more tests… we need more information to work with but she wasn’t sure what to suggest. Other than the Coeliac ‘probable diagnosis’ I still have no really useful information. I have had my own suspicions of alot of food trouble makers that she has said are ok, as do alot of other sites. I am watching so many other foods at the mo, on her recommendation, to get me to an OK state before adding more foods on – which of course has never happened. So after reading so much of this it is all making alot of sense to me and I am re-energized and enthusiastic that this may well be of great help to me. I would much rather work with a more specific list of what foods to and not to have and not have to grab some food items from one site, add others from another site, remove some of them as they are no good from another list…. – so thank you so much for all your effort here. Also thankyou to others for sharing their information which is really helpful too.
There are alot of official sites that are so cautious to watch their p’s & q’s that they are scared to say anything; and I think this site you have created is absolutely wonderful. In response to the sceptics and critics, of course nothing is 100% and not all applies to anyone, we are all different and CD in particular is so very different with each of us, but also it can be very similar in ways with alot of us too. This open, broad minded, fact listing, descriptive gathering of information is of immense use to those of us suffering, and not sure what to do to help ourselves when the proffessionals are offering very few ideas. It is also a great way to gather information that may be less common but pattern forming which will help us all become more knowledgable.
It is such a shame that you lost your Mother from this very problem, and it is wonderful of you, in response to that, and your own health, to go to this effort and help so many others. I hope it will help me, (and so many others) and that my little boy and lots of other boys and girls will be able to have their Mothers and Fathers in their lives longer because of it! Thanks to you!
Lorna.

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Steven Wright December 30, 2012 at 10:05 pm

@Lorna – Welcome to the site and thanks for sharing your story, we wish you the best of luck. I think you are on a good path. We try and teach people to create a custom diet based on first eating the lowest toxin, lowest inflammatory but highest nutrient dense foods. And then using very very simple rules anyone can build out a custom diet to include any foods they choose. There body will guide them. As for someone like yourself diet will not likely be the total answer I’m sure you know that. If you need more help accessing tests or 1-on-1 help send us an email at Jordanandsteve@scdlifestyle.com

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DavidD January 16, 2013 at 5:39 pm

I have too come back again and say thanks very much for this website guys, extremely informative, and getting replys from people who are working with these cases everyday and actually having experienced it is something else, we need more people like your selves, and whats great upon all that is we actually get too see people posting their cases, getting responses and adding progress which also enlightens other people who are experiencing the dark times by trying too actually experiment and work what is wrong with them.
I personally have had NO help literally off my doctors, They think im crazy, My rheumatologist told me my case was NOTHING SERIOUS. Let me tell you, any case or situation where i eat food and then experience a full on infection, stiff neck, twitches, fatigue, hands turning red, Is most definetly serious and after emailing these symtpoms i was told il just have too wait for the tests. I am working with the gaps diet and have noticed a lot of progress, i can eat meats but for some reason i cant touch any carbohydrates, ive got too consume brothes with cooked vegetables which gives me my nutrients, If i dont do this i go sort of anaemic, Pale face, legs goo weak etc , but if i drink the broth i come around without too many side effects. if i eat carbs some reason i get a runny nose, stiff neck, pains in kidneys/under ribcage, a lot of fatigue, i am very sensitive too a lot of foods, BUT i am getting there slowly but surely, I think ive done about four million hours worth of research and headwork, if theres any more tips you guys could give me please let me know. And let me say once more, big thanks too this site guys, your doing a terrific job.
Best regards, David

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Steven Wright January 18, 2013 at 4:03 pm

@David – Your welcome glad your seeing progress! If you ever need more 1-on-1 help come join us -> http://scdlifestyle.com/consulting/

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Suzanne Duignan January 17, 2013 at 4:34 pm

Hi I’m currently wheat, dairy and mostly sugar free since the new year after three recent bouts of horrible gas bloating pain (suffered throughout the years, went to gastro 3 years ago, no help) ….when I went to a holistic therapeutic healer for a detox foot bath in january, she Told me she thought I had Leaky Gut and to juice together 6ounces organic carrots and 6 ounces celery everyday and mix l-glutemine powder 9-10 times a day, Everyday for seven days-ten days…tomorrow will be a week and I cannot tell u how good I feel, this combined wth combination of the SCD diet wth wheat belly diet mixed in, has made me think there is hope and I will be better. I already feel better, amazing!

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Angela at Diyhealthblog.com January 21, 2013 at 12:17 am

This is an amazing article. I totally agree and was just having a conversation about this with a client. Gluten-free products are full of sugar and unhealthy, processed junk. People don’t realize that they have to heal their gut and maybe their gluten sensitivity can also be healed.

Great job. Loving this and sharing it on FB and Twitter.

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Jamie K January 26, 2013 at 6:30 pm

This been my experience also. I’ve been gluten free for TWO years and have not been getting better. In fact, my symptoms have been getting worse in now they are including neurological problems like tremors and balance issues (ataxia). Over the past 3 weeks, I’ve been working on cutting out grains/beans/nuts/potatoes, taking a high quality fish oil that is mostly Omega 3s, and digestive enzymes and probiotics to lessen inflammation and improve my gut lining, etc. I’m starting to feel better, my gut is less problematic (not going into detail, you know what I mean) and my rashes are finally starting to disappear. My energy levels are increasing a little too. So I’m hopeful that over time, my intestines will heal and I’ll be symptom free with better vitamin levels. Maybe some people who catch their celiac early enough can reverse intestinal damage simply by going gluten free, but for those of us with severe damage, it isn’t enough.

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Cinda Alspaugh February 8, 2013 at 11:02 am

Two years ago we went gluten free for our son and in eight weeks we felt he was all better. This past October his pain started again. We went paleo and he still hasn’t found relief. He was diagnosed with mycoplasma. We have allowed him to have rice cereal again, but it sounds like we shouldn’t. He’s not sleeping well, unable to focus, is falling behind in his school work, and occasionally suffers with depression. He’s taking fish oil, vitamin d, probiotics, digestive enzymes, etc. So far our pediatrician has just referred us to a pain management doctor. He recently ordered further blood work to determine underlying food allergies and the truly needed amount of supplements. I need to get him healed. A twelve year old should not feel like his life sucks! He’s not participating anymore in his extracurricular activities. My heart is breaking and our whole family is suffering.

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Nicole February 9, 2013 at 8:10 pm

I’ve been gluten free for about 2 and half years now and still have some issues, but I’ve found the other foods that make me sick are dairy, eggs and nightshades. Are you suggesting that because I might still be eating oats, sugar, etc – THAT is the reason I’m having issues with these other foods? I take a probiotic and vitamins every day. Would love to hear some feedback – thanks

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joseph February 10, 2013 at 12:05 pm

I found this comment amusing:
“It’s no joke… plants are concerned about their survival just like we are. They don’t want to die, which is why they have defense mechanisms to protect them, like toxic antinutrients and proteins that should deter any living being from eating them.”

Actually, it’s kinda the opposite. Plants provide colorful fruits and flowers (seeds) to make them appealing to other animals. Animals eat the fruit, and carry the seeds with them. Seeds don’t digest easily, so they’re excreted with complimentary fertilizer! Thus, the plant spreads its seeds and is happy.

Also, I saw no mention of the Wheat Belly cult. What are your thoughts on this?

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joseph February 10, 2013 at 12:25 pm

Also, “Weston A. Price Foundation” is to vegans as
Fox News is to Liberals.

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Janet Alamo February 16, 2013 at 6:55 pm

Hi, please excuse my English since it is not my first language. I just want to tell you that I’ve been searching the Internet for about two months because I think I am celiac for about 10 or 15 years (self diagnosed with diet). I’ve been on the gluten-free diet, but not 100%. I’ve had all of the symptons and lately, discomfort in my intestines. It felt like irritation and inflamation. So I searched for this symptoms and read a lot about leaky gut and celiac. I’ve learned a lot about this and started the SCD diet which makes me feel a lot better. Almost imediately I started to see changes in my sympoms. Where I live I can find easily roots like yam, tapioca and sweet potatoes which I eat with fermented vegetables which I learned to make and sometimes salmon or chicken. I still consume small amounts of sugar and can feel that my body doesn’t like it .
I do not eat cereals, raw food, rice which I had almost every day nor soya products. The problem I have now is that I lost weight, about 5 pounds and I think that I am not eating enough calories so I feel weak sometimes. How can I add calories to the diet without eating the toxic food? Thanks for the information, it just confirms what I’ve read and you present it in a very simple way to understand.

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LidiaM February 17, 2013 at 6:03 am

Can someone please help me. I’m desperate at this point. I’ve recently been diagnosed as Celiac. Whenever I ate gluten my stomach would hurt so much that it felt like a knife was in me. Apparently I was very very bloated. I would have these awful smelling burps which apparently were sulfur burps. It was horrible. After going gluten free, it stopped. Me and my mom get really excited when we see anything gluten free at the grocery store so I bought a gluten free dairy free pizza today and ate it for dinner. Then at 5 in the morning I woke up having to use the bathroom and had diarrhea and I was so bloated! I was nauseous but mostly bloated. I’m scared of getting sick again because my experience was so traumatic before. Do I need this diet your talking about?? Also I eat gluten free cookies, waffles, and my mom makes gluten free bread for me. I don’t eat red meat, just chicken turkey or fish. And obviously I’m lactose intolerant. Would this carb diet work for me?

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Steven Wright February 19, 2013 at 11:22 am

@LidiaM – I’d give our diet a try for 60 days and see what happens. My guess is it’ll really help.

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Angela February 21, 2013 at 11:57 am

Hello There,

I have Celiac Disease and have been struggling with my failed to attempts to heal for over 4 years. I have adopted a VERY limited diet, due to so many foods causing severe long lasting migraines, inflamation, oral allergy syndrome, asthma, heartburn, stomache pain, mouth sores, leaky gut etc… I was wondering if you could clarify which alternative sugars are problematic (e.g., coconut sugar, honey, maple syrup?); if olive oil, coconut oil, sesame oil, grapeseed oil are problematic as well; and if you consider seeds to be problematic (pumpkin, sunflower, sesame, chia, etc…).

Thank you so much for your time!

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Peggy February 23, 2013 at 9:14 pm

I’ve spent hours reading information on your website. I haven’t been diagnosed with CD or leaky gut because of insurance issues and because I’m starting to become leary of G.I practitioners. I’ve been on the purple pill for several years and thought I couldn’t live without it but after doing countless hrs. of research I took my self off of it, but not before getting a high quality probiotic and taking for a couple of weeks before I stopped the stomach meds. At one time I was on 4 different stomach meds. My stomach issues at times have been very severe with pain all in my chest, back and upper stomach. I have a stricture in my esophagus that has to be dialated when the choking gets bad. I would try at different times to get off the meds but the pain would be so bad that I’d go back on meds. But this time was different with the help of the probiotics. I’ve been off meds for 10 days now. It has been difficult but do-able. In addition I was diagnosed with IBS after one scope and diverticulitus after another one. They may be one in the same, idk. I sometimes have constipation and sometimes loose stools with burping and lower G.I gas. My biggest problem is that I get headaches, and sinuitus constantly and I know exactly which foods trigger it. All dairy, eggs, wheat, chocolate, sugar, cinnamom, food coloring, ground pepper, hot peppers, various spices. If I eat any of the items listed after wheat 3 or 4 hrs. before bed it is not uncommon for me not to go to sleep all night. Symptoms include racing heart and not being able to be still. I don’t talk much about this to people because they would think I’m a hopochrondriac. I’m very sensitive to caffein and pain medications. Pain meds keep me awake as if it were caffein. I have a lot of trouble getting enough sleep. I want to be healthy and normal. Any comments?

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Quentin B. February 25, 2013 at 10:21 am

I find that taking a PPI (stomach acid reducer) like Lanzoprazole (15mg p day) helps when I mess up my diet. It can take two weeks to reduce irritation in the gut. In my case, eating sugary food (like gluten-free choc brownies) always sends me backward. I have been at my most healthy when (as well as excluding gluten) I’ve dropped corn, rice, and potato, and just ate protein-based food (fish, chicken, turkey, gluten- and sugar-free sausages), banana, apples, cabbage, carrot, peas, sprouts, nuts, goats-milk yogurt, lactose-free milk. My weight fell but it stabilized when I reintroduced gluten-free corn flakes.

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Steven Wright February 27, 2013 at 3:57 pm

@Quentin – Might not want to take that PPI if long term healing is your goal read this -> http://scdlifestyle.com/2012/06/hypochlorhydria-3-common-signs-of-low-stomach-acid/

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Tracey Beauchamp February 25, 2013 at 5:57 pm

Hi there, I have been diagnosed with celiac disease and are trying your diet, feeling a little better but wondering if you could tell me if the toothpastes like colgate total mint stripe is okay to use. I also wanted to know if facial moisturisers and cleansers need to be looked at, does the ingredients from our skin affect the healing.
Thankyou for your time I hope you can help,
Regards Tracey.

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Steven Wright February 28, 2013 at 9:48 am

@Tracey the best resource I know of is here -> http://cavegirleats.com/

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Gabby smith March 6, 2013 at 7:40 pm

This article is awesome!! You have given me so much more than the 3 different ND’s i have paid a lot of money to see! I m pregnant and I have a lot of intolerances, eggs, gluten, dairy, seeds and nuts :( i have diarrhea 3-4 times a day and my gut is messed up! I really want to do the scd diet but is it ok with just meats, fruits, and veggies? Is that enough food? Thnks so much!

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Steven Wright March 7, 2013 at 11:46 am

@Gabby – Yes, please for you bodies sake switch to that now. Actually a lot people start on just meat and vegetables if they are very sick. And then as the correct root problems slowly rebuild their diets.

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Gabby smith March 7, 2013 at 4:37 pm

Thanks, Steve! Would your menu plan for tough cases work for me, or do the foods include seeds? I am having a hard time finding recipes that fit all of my needs.

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Gabby smith March 7, 2013 at 4:56 pm

One more thing, how long after being on the scd diet would it be ok to try one of the foods I tested as having an intolerance to on the metamatrix test? The numbers ranged from 4-5

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zack March 15, 2013 at 2:37 am

I would like to add that for those who want to introduce a carbohydrate into their diet and white rice isnt working for you try SWEET POTATOES. They are not from the nightshade family which is great, they are considered by many a paleo food considering many indigenous tribe are known to eat them. Also they are low on the glycemic index and packed with more nutrients. And it is a staple food for the the long living Okinawans.

just a thought: i have been going to my locals GRASS raised farms to get meat that is also not fed grains which provides more omega 3s and less omega 6s in my meat to reduce my grain consumption but i would also recommend doing that as well. Try to sprout all your nuts and seeds that you eat and cook them to remove lectins. Dont become stressed out about this because the cravings that you are having for these foods that you are going to miss literally diminish over time these foods that are making you sick i believe are no different than addictive drugs.

God bless

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Laura Luttrell April 1, 2013 at 11:53 am

Wow. I am 55 and I have had stomach problems my whole life. I was diagnosed with colitis (later called IBS) when I was 21 years old. Over the years Imodium became my best friend. I also had bladder problems and had “bladder infections” a few times a year. I even had bladder reconstruction in 1999 which did not help with anything. Shortly after I was diagnosed with IC, which meant most my “bladder infections” were just pain from IC and not infections at all. Also when I was about 19 I began to have severe leg cramps and was giving a shot for low calcium and took calcium pills on and off for year. Several years back I started to have muscle weakness and severe muscle pain in my legs and arms. Neurologist found nothing. I was on Cholesterol meds at the time and I stopped them and the pain decreased but never went away. I was very skinny as a child and young adulthood. Then in my mid 30s I developed low thyroid and my weight skyrocketed. So I have been pretty much overweight ever since. It seemed no matter how hard I would try I could not lose weight other than a few pounds. My diet was very poor partly because it seems no matter what I ate it did seem to change. The fall of 2011 I decided to go on a low carb diet. In 3 months time I actually lost about 18lbs. The amazing part is I noticed my constant leg pain was much better. Then Dec 31,2012 i was in a pretty bad accident and thrown from a transportation vehicle causing multiple injuries. So this past year I put the weight back on and the muscle weakness and pain came back to some degree. Because of the accident I had constant neck pain and I developed frozen shoulder. I had treatment for that but did not really help much. Then the end of January I was fed up with being “fat” and once again embarked on a new diet. This time I actually started reading my email’s from nutritionist and realized that I may have gluten intolerance. So on my own I have embark on the gluten free life. I was so amazed to find that not only was my lifelong IBS so much better, my severe headache seem to have calmed down and my muscles and IC also were improving. And the really amazing part is I noticed that my neck pain had subsided. I could go on and on but I was absolutely getting better due to the diet, but nowhere near 100%. This past week I finally talked to my dr. about what was going on. I never told him about most of my stomach problems because i never knew that everyone didn’t have stomach aches after eating, I thought this was digestion and everyone felt that..Duh . Anyway he said that he thinks with no doubt that I had Celiac Disease. He said the only treatment is a gluten free diet so he doesn’t feel test are really necessary. He said that he was just going to leave my chart saying IBS thinking that would somehow be better. Still confused by that but not really wanting testing right now either.. Anyway I just happened on your page and I am so encourage but the comment’s I am reading. I have not actually looked at what the diet entails but i will be back to go through it more thoroughly. Thank God for people like you who want to share your knowledge and experience with those of us who feel so lost.

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Jessica April 8, 2013 at 9:23 pm

Hi,
I was misdiagnosed with IBS for three years and have been now diagnosed celiac and have been following the gluten free diet for 5 years. In the past 1 year – 1.5 years I have been experiencing symptoms again. I have had all kinds of tests and doctors tells me I am accidentally gluten-ing myself. I am so excited to try the SCD diet and see if it will help…. I am so tired of feeling like crap all the time! Thank you for posting info and everyone else thanks for all the comments you post…. its so great to not feel alone in this.

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Brittani April 24, 2013 at 10:34 am

so what exactly CAN we eat then? simply fruits and veggies and meat or is that not safe either? not corn as you said above so oviously not even all veggies are even safe… how can this possibly be a healthy diet? the food options would have to be so slim that you eat the exact same things every week. I am not trying to argue with your article I simply do not understand. I am trying to figure out what is going to help me heal but honestly i cant imagine simply surviving off certain veggies. I dont even like that many of them. I would almost rather die from the cancer I am inevitably going to get no matter what i eat :(

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julianne June 24, 2013 at 7:21 pm

There is a strain of quinoa that also triggers inflammation in celiac.
Also there is a clinical study where those with non responsive celiac were tested with a paleo diet (grain free, no processed food) and nearly all went into remission. I’ve written about it here, and links to several studies showing different foods that affect those with celiac. http://paleozonenutrition.com/2013/05/13/non-responsive-and-refractory-celiac-disease-study-a-paleo-type-diet-gives-100-remission-for-most/

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Kim Gottschall July 3, 2013 at 6:44 pm

I just came across this website and wanted to share my experience with a specific carbohydrate diet. I was diagnosed with Celiac disease about 20 years ago. The first couple of years I followed a strict gluten free diet but was still having problems with diarrhea and trouble gaining weight. I remember I was eating bland rice cereal for breakfast and it would make me feel sick. I discovered Elaine Gottschall’s (no relation that I know of) book “Breaking the Vicious Cycle” and the research seemed sound so I thought it couldn’t hurt to try it. Within a week of going on the diet I had normal bowel movements. I was stunned that I started feeling that much better and had energy again. Well, I continued the diet for almost 2 years (which I personally didn’t find that difficult because I like all the foods in the book and I felt so much better) and then started slowly introducing rice back into my diet and other gluten free foods and I felt fine. I just wanted Celiac’s out there to know that it helped me tremendously and I did not have to continue the diet for the rest of my life. My intestines were badly damaged and I was very underweight so, I assume it gave my intestines the ability to heal so I then could better digest other gluten free foods. (can’t do oats though.)

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Diets July 20, 2013 at 11:51 am

Thanks for sharing benefits Of eating healthy diet foods.These are helpful for mention a perfect health.

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Lee nolan August 10, 2013 at 12:14 am

I was diagnosed with celiocs 9 years ago
I get stomach cramps & exssessive wind.
So I went on a GF diet and it worked but it started to depress me as I love all food but I noticed a little bit of what you like never hurt you well I eat gluten but I notices I can tolerate white bread but not brown bread not even standard. I get bad guts.

I noticed I have lost a lot of weight but after being 16-17 stone now I’m 13.7 stone I feel ok I still what I eat but I take multi vita and cod liver oil & evening prime rose oil

I’ve been on this for over 2 years and I feel better. If you can get the vitamins into your system any way I recommend my option. I do not smoke or drink. Well I drink at celebration times.

Hope you didn’t mind me commenting my views as I’ve been sceptical from day one.

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Luanne Panacek August 28, 2013 at 6:00 pm

I have read everything on this site today and I will do the Intro SCD diet as soon as possible (next two days). I was diagnosed with Colitis in my early 20s and IBS in my 40s. About three years ago I developed the most annoying, disgusting, painful, itchy rash on my forearms, scalp and chest. It took me nearly a year and a dozen doctors for me to self diagnose the possibility of Celiac Disease after seeing a picture of dermititis herpatformis (DH). I asked my GP to do a blood test. Simultaneously I was obtaining surgical opinions for advanced diverticular diseasse and was told I needed a colon bisection. The blood test came back positive for Celiac and I eliminated gluten from my diet that day. Of course it took me a long time to determine all the things in my life that contained gluten but without gluten in my diet I felt better almost immediately. I felt immensely better after the surgery in February 2012. I lost about 40 lbs without effort and my fibromyalgia seemed to be in remission. A little over a year ago an allergist prescribed Dapsone for the DH and it was very effective in eliminating the DH. Then I was told by many people and physicians that Dapsone was poison, nasty stuff and that I needed to stop taking it. Over the last 10 months I have gained the weight back, the pain in my body has increasingly gotten worse, all my joints are excruitiatingly painful and I started to have severe DH outbreaks all over my body. I stopped taking the Dapsone in April or May 2013 and took it again when the severe DH outbreaks occured. Bloating, inflammation, diarhea, severe fatigue, terrible breakouts and I don’t have any gluten in my diet. It must be other grains and the gluten free products! I was wondering if you think that by “stop” “starting” the Dapsone I am causing increased permeability in my colon which is making the DH outbreaks worse than ever? I apologize for this being a dissertation. I just want to feel better, get off the toilet, have the energy and time to live my life. I miss being the energizer bunny! I am buying the e-book and it makes sense to me. I will give you an update in the next week or so. BTW…I also recently had blood tests for food intolerances and a myriad of things showed up including a number of fruits and vegetables and my rheumatologist says no beef, lamb or pork. So the list of foods and getting increasingly short. Eggs are also a food I have an intolerance for…geez. I will let you know how the SCD works out for me.

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Patricia September 11, 2013 at 5:02 pm

You guys to a great job – what a great resource you are! I have a couple of questions that I’m hoping you can answer.

Are you saying that SIBO, left untreated, begets Celiac Disease?

I have 2 sons, 11 and 12, both of whom have tested gluten, dairy & egg intolerant (Cyrex (Array 4) and Biotek tests); also, soy for one and oats for the other. Both tested for SIBO which was positive for older son. My younger son seems to be fine if he just avoids those foods. Been gluten, dairy free for about a year. Now been following Full SCD+FODMAPS (excluding eggs) for whole family for last month. But my older son still pale, somewhat lethargic, achy body, ADHD symptoms persisting, still the odd migraine (although the excessive gas has disappeared). The thought of going to Intro SCD is nagging at me; cutting out fruit and honey is also calling out as a likely solution; but he is going to freak out. So hard for these kids to go to school every day while all the other kids around them are eating pizza, burgers, fries, etc. from the cafeteria. I know it is the right thing to do. But they would really rather live with the symptoms to be able to eat those foods. I constantly remind them of the long term health implications; but honestly, they are sick of me talking about it and sick of being the kids with the weird food. Would appreciate any advice, suggestions, ideas… whatever … to help them deal with it all.

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Beth Johnson October 20, 2013 at 12:05 pm

Hello, I just want to say thank you for all of the valuable information you have provided. I was captivated by the FB posting “The toxic truth about Gluten Free Foods and Celiac Disease”, so I decided to read it. I am glad that I read it, as I have been having questions about my own GF diet, which I have been on now for almost 2 years. I occasionally still have that bloated feeling, and have been trying to figure out why. This article has given me good insight as to the possibilities of why, so I will start to eliminate any processed grains ect. from my diet. As a nutritionist, I do limit the amount of GF processed foods that I eat, and focus on whole, naturally GF foods. But I do love to eat my toast and make my GF baked goods on occasion. I look at it as everything in moderation. But if the larger sugars in these processed foods are what is causing the inflammation, I’m willing to take them out and see what happens. I also just read through the SCD, and noticed that I am pretty much already eating the diet, aside from the occasional bread or pasta. I will give it a try though, looks like the only tough thing will be eliminating the potatoes, since I rely on them for a fast carb source. I am a big fan of probiotic, and natural whole food supplements as well. It is important to let your readers know that if they are on a GF diet, they should be sure they are getting in enough B vitamins, due to the elimination of wheat. There are a good amount of people out there that don’t know this. Many symptoms and health problems can arise from a lack of these vital water soluble vitamins that we need on a daily basis. It may be difficult to get all of what is needed through food alone, so a good supplement can provide the “back up” when we have those days when we are lacking. In closing, I would say that the only other thing I would comment on is your caption “find out the toxic truth about gluten free foods”. I think that this could potentially give readers the wrong idea, if they do not read the whole article. This is because most foods are naturally GF. I would rephrase it by saying “Find out the toxic truth about Processed GF foods.”
Thanks again for the info, and I will stay on top of your articles in the future!
All the best-

Beth Johnson

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Lu February 12, 2014 at 11:32 pm

Have had definate problems with undiagnosed celiac disease. I can say that the number one thing that has all but cured this in my situation is stopping soda pop. yep, this is the problem for me. I drink water now and can eat almost anything. When I drink soda I have NOTHING but problems.

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Sarah L March 2, 2014 at 11:50 am

Would you recommend this diet for non-celiac persons?

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mat March 20, 2014 at 7:58 pm

To say this article is ridiculous is ridiculous!!! you have to take into account that the results will vary because of your thoughts on how it will work for you. Einstein even said that if you perceive something to have a result it will have a different result for all who are tested. Also in nature plants have signals and defenses it is only natural for this to happen to all food we eat because it is all ALIVE at one point or another. want better results in what you do or eat ???? LOOK UP Dr. emoto and his water experiment. this effects all things.
too many people jumping on band wagons and don’t even know how the body works or how the mind itself contributes to its health.

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thomas March 26, 2014 at 2:45 am

I was diagnosed with CD just less then two years ago. ive regained my life back , but it hasnt been easy. There is no quick fix. My doc has just recently g ot my thyroid up to 3.19. My body contour is changing, more muscle mass and stamina. In reguards to diet, when first diagnosed we tried many of the packaged gf foods. All of them I reacted to negatively. My diet now is very natural. NO PROCESSED GF FOODS AT ALL…I juice greens daily, also veggies and fruits, we use only coconut oil when cooking, we smoke alot of fish, no sugar, dairy, grains, soy. Very rarely go out to eat. Dry fruits, dates figs prunes, are my snack. I drink 4 oz of aloe vera juice and also drink water lots of water , twice a day I add 4 tbs of braggs apple cider vinegar with the mother. Plus my thyroid pill and and all in one vitamin mineral supplement specificly of CD patients. And last I have a daily protein shake with amino acids and l gluetine. This is my journey.

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Esa May 5, 2014 at 4:42 am

Hi,

I am just wondering…have you concidered that GM soy and GM corn cause also leaky gut and dozens of different symptoms including inflammation. There are studies also about meat that has been produced using previous GM organisms and they show that GM animal feed is passed through the animals we eat into human body causing there bad problems. I am just thinking as a vegetarian, that there are lots of plants that have not been studied but propably have their defence systems as well. Why do you think Soy would be worse than other beans or grain? Just because they happen to be tested and there are recearch about them? BR. Esa Salonen, B.Eng Food Tech. M. Eng Environmental tech.

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Aviva April 7, 2014 at 1:25 pm

Great series of articles describing Celiac. I wish you wrote the same about Crohn’s disease. Or do you think it works the same but with different outcome? My daughter has Crohn, she is on the SC diet and getting better all the time.
Thank you so much for your dedication.

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Alexandra Reuter April 21, 2014 at 10:29 pm

Jordan,
Thank you so much for sharing you wisdom. I have been praying for years to get better. I have had so many issues for the last 7 to 8 years when things got really bad. I am so excited to follow the diet. I’m on Paleo right now and I love it but after failing to really feel 100% better I knew something must still be wrong. Not to mention my lack of feeling 100% better destroyed my conviction a bit and I find myself eating processed foods that I hate and I know exactly what they’re doing to my insides. So ready to let go of the defeated mindset and start fresh. God Bless you! Thanks again!

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Cindy April 27, 2014 at 7:34 pm

Hello and thanks to everyone who has contributed to this site! I have a question about Malabsorption issues: Is the liquid nutritional product “Ensure” by Abbott very harmful? It seems to have greatly benefited me in the past but I am worried about this SIBO thing you mention here. I have gluten intolerance and bad pains, gas, etc. but sympathize most with the folks here who just feel like giving up if they can’t seem to eat anything at all that they like. And by legumes do you include lettuce? Lettuce is the only veggie that I can eat (except organic green beans and peas) because I am a kidney-stone former. Thanks for any additional info!

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Carolyn May 22, 2014 at 8:38 am

Just wanted to thank you for your website and let people know that I have lab test results that show my liver function tests are now completely normal after only two months on the SCD diet and following Elaine Gottschall’s book. This may seem trivial to some, but I haven’t had normal liver function tests for my ENTIRE ADULT LIFE (almost 30 years so far). Despite being gluten free for ten years since my diagnosis, I have never felt completely well on a very “healthy” gluten-free diet. I’ve seen some of the best doctors at Mayo Clinic and University of Colorado, none recommended anything but a “Low-fat, Gluten Free diet”. It doesn’t work, SCD does. It’s not just in my head, I have the lab tests to prove it! I hope anyone struggling to be well with Celiac disease will give the diet a try, it’s worth it!

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L Fields July 1, 2014 at 9:10 am

It’s real shady of you not to mention GMO’s in your article, you know that 90% of the problem.

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