The Gluten-Free Lie: Why Most Celiacs Are Slowly Dying

by Jordan Reasoner

Conventional medicine usually works like this…

I have a problem, the doctor figures out what the problem is, and gives me a conventional prescription generally supported by Doctors, researchers, and the FDA.

This prescription is supposed to be relatively safe and effective in accordance with the laws in the United States and most modern countries

But what if the conventional prescription doesn’t work?

Like people with Celiac Disease that follow a strict gluten-free diet and don’t get better…

Does that mean the gluten-free diet is the wrong prescription for Celiac Disease?

Earlier in this series, I showed you that gluten is toxic invader that causes Celiac Disease.  Logically, removing the intruder is the first step towards treatment.   That’s why anyone diagnosed with this autoimmune condition gets the conventional Celiac Disease prescription: follow a strict gluten-free diet for life.  But the latest Celiac Disease research is painting a very different picture.

The University of Chicago has one of the leading treatment and research centers for Celiac Disease in the U.S., so my jaw dropped when they posted this:

“While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal.”[1]

60% odds are worse than flipping a coin…

It would be easy to read that and think, “So it’s the people that don’t follow a strict gluten-free diet that don’t heal.”  But to be honest, I don’t think they said it as strongly as they should have.  Here’s a recent study that paints a much darker picture of the gluten-free diet’s success rate.

Only 8% of adult patients healed on a gluten-free diet…

A 2009 study in The Journal of Alimentary Pharmacology and Therapeutics looked at 465 Celiac Disease patients and found only 8% of adult patients reached “histological normalization” after following a gluten-free diet for 16-months, meaning their gut tissue completely recovered to that of a healthy person.  The authors stated:

“Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD” [2]

These people followed a strict gluten-free diet for 16-months and most didn’t heal their gut.  The success rate of the conventional Celiac Disease prescription isn’t working… and the research is exploding the truth.

Another 2010 study in the American Journal of Gastroenterology looked at 381 adults with biopsy-proven Celiac Disease.  The authors found small intestine mucosal recovery occurred in only 34% of participants following a Gluten-Free diet for 2-years.  They concluded:

“Mucosal recovery was absent in a substantial portion of adults with CD after treatment with a GFD.”[3]

The Conventional Merck Manual definition for diagnosing Celiac Disease provides that: “The diagnosis is confirmed by an initial microscopic examination of a biopsy specimen revealing flattened villi of the small intestine and by a subsequent improvement in the lining after the person stops eating foods containing gluten.”

These studies clearly show that when a Celiac stops eating foods containing gluten, the intestinal lining isn’t healing.  But that’s only scratching the surface of what’s going on…

65% of gluten-free Celiacs still have a raging fire in their gut

The same 2009 study in The Journal of Alimentary Pharmacology and Therapeutics of 465 Celiac Disease patients 16-months gluten-free found that 65% still had “persistent intraepithelial lymphocytosis” AKA inflammation in the gut.[4]

Their intestines are on fire with inflammation even after 16-months gluten-free.  Why is that important?

We know gut inflammation is associated with a laundry list of health issues, including cancer and early death.  That’s bad news for the conventional Celiac prescription and even worse news for the people not getting better on a gluten-free diet.  Want more evidence gluten-free doesn’t put the fire out?

A 2008 study in the Journal of Inflammation looked at 18 symptom-free Celiac Disease (SFCD) patients and found they still had elevated markers of gut inflammation even after 2 years on a gluten-free diet.  The authors reported:

“Faeces of both active CD and SFCD (symptom-free 1-2 years on a GFD) patients, representing an imbalanced microbiota, significantly increased TNF-alpha production and CD86 expression in PBMCs, while decreased IL-10 cytokine production and CD4 expression compared with control samples.” [5]

In another 2009 study from the American Journal of Gastroenterology, researchers looked at small intestine biopsies from 45 children with Celiac Disease and 18 clinical controls.  The authors found an increased presence of T cells (inflammatory marker) in well-treated CD patients:

“The long-lasting presence of high frequencies of T cells in the epithelial compartment in well-treated CD indicates that the epithelium is stressed possibly because of constant attack.”[6]

Both these studies looked at patients that are supposed to be “healed”… supposedly “well-treated”. Even though they appeared to be symptom-free, the medical tests paint a much different picture.  These asymptomatic adults and kids still had inflammatory fires raging in their gut… promoting further disease development (like Cancer).

So far this research has only reviewed patients following a gluten-free diet for 1-2 years… but what about long term?  Does the body just need more time to heal and get back to normal?

56% have poor vitamin status after 10 years gluten-free

A 2002 study in the of Alimentary Pharmacology and Therapeutics looked at the vitamin status of 30 adults with Celiac Disease showing “biopsy-proven remission,” after following a gluten-free diet for 8-12 years.  They found that 56% had poor vitamin status, suggesting that proper nutrient uptake is not occurring. The authors concluded that:

“It is generally assumed that coeliac patients adhering to a strict gluten-free diet for years will consume a diet that is nutritionally adequate.  This is supported by the demonstration of a normal bone mineral density up to 10 years of dietary treatment.  Our results may indicate otherwise. We found signs indicative of a poor vitamin status in 56% of treated adult coeliac patients.” [7]

Even after following the conventional Celiac prescription for 10 years 56% still showed signs of poor nutrient uptake, meaning their digestive system still isn’t working like it’s designed to.

That means after 10 years of being gluten-free, HALF of all Celaics are likely starving for the critical nutrients required for health and longevity.  It’s no wonder we have a 77X increased risk for lymphoma.[8]

The gluten-free diet doesn’t fix leaky gut

Earlier in this series, we discovered that gliadin initiates leaky gut by increasing the zonulin protein in people with Celiac Disease.   And later, we learned that fixing leaky gut is absolutely essential to reversing the damage from Celiac Disease…

But the gluten-free diet doesn’t fix leaky gut…

As it turns out, when Celiac Disease patients follow a strict gluten-free diet, their zonulin levels do fall (which is good).  But research shows that they still have elevated levels of zonulin compared to non-Celiacs.  And when the zonulin levels are still high… the Tight Junctions can’t restore normal function and the leaky gut remains.

Chris Masterjohn found the same thing reviewing a study by researcher Allessio Fasano,[9]

 Remarkably, they found that celiacs produce 30 times as much zonulin as non-celiacs, even though the non-celiacs were not eating gluten-free diets while the celiacs had been off gluten for over two years!

Here’s a graph of their data:

 

This is remarkable because even though the point of the study was to show that gluten increases zonulin production, the controls were eating gluten yet had infinitesimal levels of zonulin production, while the celiacs had not eaten gluten for at least two years yet still had very high levels of zonulin production.  This suggests that something besides gluten may be causing zonulin production in celiacs.

 

Chris also pointed out the same study looked at Leaky Gut in Celiac Disease patients following a gluten-free diet for more than two-years:

[NOTE: in the graph below, the smaller the bar, the leakier the gut is]

Here they measured trans-epithelial electrical resistance (TEER) of intestinal tissue taken from gluten-free celiacs and gluten-eating controls.  TEER is an estimation of the leakiness of the gut, where a lower value indicates a greater level of leakiness or permeability.  They found that tissues taken from controls who had been eating gluten had three-fold less leakiness compared to celiacs who had been off gluten for over two years.  This, again, suggests that something besides gluten may be contributing to leaky gut in people with celiac.

So in summary, Chris pointed out:

  • Celiacs produce 30 times as much zonulin as non-celiacs, even though the celiacs had been off gluten for over two years!
  • Intestinal tissues taken from controls who had been eating gluten had three-fold less leakiness compared to Celiacs who had been off gluten for over two years (so Celiacs had a much leakier gut, even while eating gluten-free)

But the evidence doesn’t stop there…

A 2008 study in the Brazilian Journal of Medical and Biological Research tested for leaky gut in 22 celiac disease patients who were on a gluten-free diet for 1 year.  They found these patients following a gluten-free diet still had a much leakier gut compared to healthy controls eating gluten (0.013 vs 0.003, P = 0.001).  The authors concluded:

“This means that, at some time, complete recovery of intestinal villous may not have occurred and an inflammatory process may have persisted.”[10]

This is crazy!  All this research shows the gluten-free diet doesn’t heal Celiac Disease.  In fact, the evidence suggests that in many cases, leaky gut and inflammation remain high for years on a gluten-free diet.  This spells bad news for anyone with Celiac Disease relying on a gluten-free diet as the only treatment protocol…

It breaks down like this… high inflammation, poor vitamin status, and leaky gut persist on a gluten-free diet which leads to one thing: untreated Celiac Disease…

And untreated Celiac Disease will kill you… fast

If you don’t completely heal from Celiac Disease, you’re going to die much sooner than healthy people.  In fact, one of the largest cohort studies on Celiac Disease patients and mortality published in the Journal of The American Medical Association found that:

  • Those with Celiac Disease (villous atrophy) had a 2.80-fold increased risk of death the first year after diagnosis and a 39% increased risk of death over the study period

But the authors didn’t stop there… they also looked at people with intestinal inflammation.  Remember the two studies on “well-treated” (asymptomatic) patients that still had inflammation?  The authors found:

  • Those with intestinal inflammation (and not villous atrophy) had a 4.66-fold increased risk of death the first year after diagnosis and a 72% increased risk of death over the study period[11]

A 72% increased risk of death! 

In other words, if you’re a symptom-free Celiac and your labs show signs of gut inflammation… you’re going to die much sooner than you think. 

So should Celiacs eat a gluten-free diet?

Yes… gluten is still the kryptonite in Celiac Disease, don’t ever eat it.  Following a gluten-free diet is a requirement for treating this autoimmune condition… but you can’t stop there.

This evidence clearly shows that only following a gluten-free diet doesn’t fix leaky gut, gut inflammation, or a damaged gut lining.  That means the gluten-free diet isn’t enough to treat Celiac Disease patients and anyone using it as the only protocol is at risk for dying much sooner than they should…

The conventional Celiac prescription is incomplete and not working.  There needs to be more. 

In the last post, I showed you that fixing leaky gut is a critical step in reversing Celiac Disease… and now you know that gluten-free doesn’t cut it.  In the next part of this series, I’ll explore the leaky gut-Celiac connection and what to do about it.

Here’s the next post: “The Toxic Truth About Gluten-Free Food and Celiac Disease

 

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

{ 96 comments… read them below or add one }

Jamie March 13, 2012 at 12:15 pm

THANK YOU. This has just confirmed what I have personally experienced. :'(

Reply

ohyllis byard March 13, 2012 at 12:30 pm

Hi Jordan and Steve,
Thank you so much for bringing this important information to your “public!”
I think I’m living proof of what you’re saying in this article. I’ve been on GF diet for some time, albeit when I started I wasn’t as serious as I should have been. But, even when strictly following it, I’ve had lots of other symptoms (pain all over – literally and figuratively). My doctor is ahead of the curve in many ways and insists on frequent blood tests to monitor all sorts of things, and also on his patients taking adequate amounts of supplements to ensure that their nutritional needs are being met. Being GF (and being careful of other prolamines) has got me to the point that I’m having perfectly normal bowel movements consistently. He has decided that although my blood work markers have reached very good levels all around (except inflammation markers like CRP and Rheumatoid Factor) that there is a latent infection/inflammation somewhere in my body (not limited to gut) so he has started me on an Azithromycin protocol, some days on and some days off. Been doing that for about 3 weeks now. Can’t really tell what’s the outcome is as yet but have blood test scheduled for June.
Although it is frustratingly slow, I do feel I’ve made some progress in fighting this condition because at least bowels and several other complaints have definitely improved. So, this gives me hope that with continued perserverance I will be able to beat this beast!
Thanks for all you do.

Reply

Pawan March 13, 2012 at 12:43 pm

Jordon,
Thank you for another great post. I’ve been eagerly waiting for this post since I read the first one in your series. I very much appreciate the depth of your research and tying things together for people like me. My own physical symptoms make sense to me. I’ve been gluten free, but based on my working knowledge of Chinese Medicine, I still feel the emotions that go with the small intestine meridian. That did not make senes to me, until I read your blog. Your time, energy and effort is very much appreciated. Thank you and many blessings.
Pawan
Pawan

Reply

Angela March 13, 2012 at 12:56 pm

Jordan~ Thank you for doing these articles. Following the SCD there seems to be so much emphasis on other IBD and I often wonder if there is anything that works to heal celiac disease. I am encouraged by the information that you are presenting. Knowledge is power. I did not know about gluten until 6 years ago, when I diagnosed myself and started a gf diet. (I have since had the biopses that show CD). I followed a strict gf diet for 5 years with no improvement. I started the SCD 10 months ago. Still not having perfect bm, but I do have hope. So thankful for you and all that you are doing to help me and so many others.

Angela

Reply

Jordan Reasoner March 13, 2012 at 3:57 pm

Thank you Angela – hope is most important :-)

Just know that you’re not alone, there’s many of us out there!

Jordan

Reply

Kat March 13, 2012 at 3:22 pm

Thank you so much for this article! I’m looking forward to the next one.

I went to the Canadian National Celiac conference last May and they talked a bit about Celiac cases that didn’t resolve on gluten-free diets. The most they could explain about it is that some people have other food sensitivities. I hope these doctors start to finally get it that there’s more to Celiac than just wheat.

Reply

Jordan Reasoner March 13, 2012 at 3:56 pm

Thanks Kat! I hope by the end of this series, we can get some more Doctors on board with this :-)

Jordan

Reply

Mike March 13, 2012 at 4:28 pm

This is probably a gross oversimplification of the issue, but in my opinion, it’s not just gluten, it’s all fiber in general. Fiber is a gut irritant, not the friendly “street sweeper” that we’ve been led to believe. So, if you’re replacing gluten with vegetables and fruits that are high in fiber, you’re still going to have an issue with intestinal healing. Eat white rice and grass fed beef/bison like it’s your job, along with some low fiber fruits, and you’ll see much better results.

Reply

Jordan Reasoner March 13, 2012 at 9:24 pm

I appreciate your opinion Mike. I do think insoluble fiber can be a gut irritant… but the bigger picture lies in the other problem foods people typically eat on a gluten-free diet, which I’m going to cover in detail over the remaining 4 parts to this series.

Stay tuned and I look forward to your feedback on the rest of the series.

Jordan

Reply

Laurie March 13, 2012 at 4:45 pm

Kudos to you, Jordan, for driving home the seriousness of our situation. It is so tempting to say, “I can take a bit of discomfort for an occasional couple of bites of bread or cake.” Your article demonstrates that 1) gluten is simply a no-no, but 2) it is also life-threatening, and therefore beyond a simple or variable approach. While it is tempting to look with sorrow upon the situation, your posts inspire perseverance and a sense of community. I look forward to your next piece in this series.
Laurie

Reply

Jordan Reasoner March 13, 2012 at 9:26 pm

Thank you so much Laurie – I really appreciate your feedback!

There’s evidence that cheating just once will “turn on” your immune system with antibodies for up to six months, so yes, cheating is a bad idea :-)

I’m working hard on the next part already, stay tuned.

Jordan

Reply

Susan March 13, 2012 at 8:26 pm

I was diagnosed almost 2 years ago, and have maintained a gluten-free diet as much as I possibly can (always at home, and try my best when eating out-it’s a crap shoot). I have had my inflammatory markers for celiac rechecked after 6 months of going gluten free, and they were all normal. If the blood markers are normal, do you think there is still damage occurring in the gut? Should people continue to have biopsies done to determine if the gut is healing or not? Interested to know-have a GI appt at the end of the week, and would love to discuss this with her, as I still have symptoms. Thank you-

Reply

Jordan Reasoner March 13, 2012 at 9:34 pm

Thanks for reading the series Susan. When you say “I have had my inflammatory markers for celiac rechecked after 6 months of going gluten free” do you mean that you had your gluten antibodies checked?

That’s what I suspect, in which case that just tells you that you’re doing a good job of staying gluten free. Some of the inflammatory markers you’d want to look for would be High sensitivity CRP, you can also look for elevated ferritin (levels over 200) and elevated HDL (look for levels over 90-100). Also, elevated monocytes (above 7) can be another secondary indicator of inflammation.

Stay tuned for the rest of the series, things are going to get more prescriptive going forward.

Jordan

Reply

Carole March 14, 2012 at 12:11 am

I find that most people on a gluten-free diet still consume grain-based gluten-free processed foods. My husband wasn’t diagnosed with Celiacs, but he had all the symptoms. He then did testing through Cyrex Labs (http://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx) who offers testing that checks *all* the forms of Wheat/Gluten Proteome Reactivity as well as Gluten-Associated Cross-Reactive Foods and Food Sensitivity. It was found that he is intolerant of all other proteins associated with gluten/wheat as well as all the foods on the cross-reactive list except yeast. I highly recommend this testing! SCD is working well for us! (Cyrex also does a Gut Permeability test so you can see the progress of your progress of your leaky gut.)

Reply

Mike March 14, 2012 at 8:43 am

I look forward to the remaining four parts of the series, Jordan.

I don’t necessarily agree that soluble fiber is THAT much better than insoluble fiber, particularly if you already have a perforated intestinal wall. If you’re looking to heal the intestinal wall, it’s my opinion that all fiber should be avoided during this process, and maybe even in perpetuity.

Another component of intestinal healing that often gets overlooked is eating schedule. If you’re constantly eating/grazing small meals all day long as most quack nutritionists advise (“gotta keep a log on that fire!!”, they say), then you won’t provide an opportunity for the intestinal wall to heal, as it never has time to rest. If you have knee surgery, then immediately go out and start playing basketball every day, your knee won’t heal, either. This is why I think most people will get amazing results if they essentially fast during the day, eating only a couple, widely spaced, very small snacks of animal protein and maybe some homemade kefir, and then have a relatively large dinner consisting only of white rice, grass fed bison/beef, and maybe some low fiber fruit. Definitely try to avoid at all costs: nuts, seeds, legumes, vegetables, brown rice, wild rice, and specific high fiber fruits, in addition to the usual gluten foods.

Takeaways: when you fully avoid irritants, and then provide larger windows of non-eating to allow for healing, the intestinal wall will heal very quickly, and once it’s fully healed, people will find that they have a much better tolerance for foods that once gave them issues when their intestinal walls were perforated (dairy, for example).

These are my personal results from rigorous and obsessive self experimentation.

Reply

Mary March 18, 2012 at 6:03 pm

I was diagnosed almost 2 years ago with a biopsy. The original blood tests were inconclusive. The GF diet has actually made me feel worse. I tend to agree with Mike. If I eat seeds, nuts, oranges, grapes, vegetables etc. I cannot get out of the bathroom, most of the above foods come out just as they go in, the bloating is almost worse than the diarrhea. I had a knee replacement in Nov of 2011 and it is still swollen, the Dr.s have no idea why. I think it has something to do with the celiac disease since they have never encountered this problem before. I had diarrhea for over 10 years before they did the biopsy. The Dr. treated me like it was all in my head.

Reply

Steven Wright March 20, 2012 at 8:23 am

@ Mary – You should really give our version of the SCD diet a try. It’s same protocol with a few updates that turned Jordan’s health around when it was failing due to the Celiac Disease. Give it a try for 30 days you won’t regret it!

Reply

Brandi June 5, 2014 at 6:14 pm

Before i was diagnosed with Celiac Disease, my doctor diagnosed me with everything under the sun. From a eating disorder, to anxiety, depression, ulcers, bleeding ulcers, IBS, and psychosis!! FINALLY, i figured out why my Great-Aunt was on chemotherapy, yep….. Celiac Disease! i learned from my experience, that doctors are human, and they don’t know all they think they do!! Good to hear , that i wasn’t the only one that was told i was “crazy”!!! ((:

Reply

Erica March 21, 2012 at 12:05 am

Mike, that’s really interesting. I’m starting to realize that meat, turkey bacon, fried (not scrambled) eggs, berries, avocados, soups, and maybe a little white rice are the gentlest on my stomach. But how will I get proper nutrition if I’m eating meat and white rice all the time and very little vegetables? How do you all feel about longer-term fasts? I’ve been considering going on a 7 or 10-day fast from food (under the supervision of a naturopath, if she approves). I’ve heard that fasting can do wonders for illness, and I definitely notice the difference (so much less bloating and inflammation) when I go a day without eating. But I’ve also heard fasting is to not be undertaken by someone who’s feeling weak already.

Reply

Mscott March 26, 2012 at 12:51 am

Regarding the study you cited as proof that in half of celiacs “their digestive system still isn’t working like it’s designed to” after 10 years gluten free; looking at that study it appeared that 56% indeed either had poor levels of vitamin B6, folate, or both. However, all the celiac patients had an averaged daily intake of folate of about 184 micrograms per day, lower than controls and well below the NIH’s recommended daily intake of 400 micrograms. This is a clear explanation as to the low folate status in 20% of the celiacs. I’m less sure about the other 37% with low B6, but given the low folate intake overall, one possible explanation for that could be that B6 levels were lower because, in the absence of folate, B6 was used more readily to detoxify homocysteine, given that both nutrients can serve that purpose.

The authors of the study in question themselves said “our findings can hardly be explained by persistent intestinal malabsorption”. I guess I’m wondering whether that study actually supports your statement that “proper nutrient uptake is not occurring” in the 56% or that they just weren’t eating enough folate rich foods.

Reply

Stephanie March 26, 2012 at 7:46 am

The standard gluten free diet includes foods that have up to 20 ppm gluten in them. The FDA gluten hazard study: http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf
concluded that an average celiac is safe with levels below 1 ppm, and some are sensitive to even lower levels than that.
It is no wonder that celiacs aren’t healing on the gluten free diet.

Reply

Jordan Reasoner March 27, 2012 at 9:32 am

That’s a great point Stephanie – It’s really too bad. The research shows that even a tiny amount will trigger some degree of inflammation and opening of the tight junctions… and even activate an immune response for up to six months.

The hard part with these studies is also related to the reporting of the participants and whether or not they cheated or not, as that would affect the results. But it’s a starting place for us to make some hypothesis.

Jordan

Reply

Nikki July 22, 2012 at 12:02 am

This was my question too. I had been told that ‘gluten free’ standards in the US were a lot lower than here in Australia – it’s 2 ppm here to be allowed a gluten free label. Do you know of any studies conducted on Australian or other nations that adhere to this standard?

Reply

Debbie March 27, 2012 at 9:03 am

When will you tell the “rest of the story”? I know it is in the SCD, but is that enough? I just found your blog this morning and I am reading and reading and reading. Great stuff!!! Please share the answers soon!!!! Thanks. My celiac symptoms were mostly not digestive. I had burning muscle pain, a diagnosis of fibromyalgia, migranes, other headaches, anxiety, a crazy fluctuating TSH (thyroid removed 22 years ago after 13 years of hyperthyroidism, I was 23 when it was removed), skin rashes (still a little bit of that), and it seemed like a different pain everyday. That all went away when I cut the gluten. My daughter has Hashimotos, JRA, and celiac. We are grain free and the only dairy in our lives in cheddar cheese (Yeah SCD approved). I so desperately want to do everything I can for my daughter to make sure she lives a long, healthy life. I want one too!!! I have been researching and reading for a little over a year now.I am info junkie in this area and I can’t wait to see what else you have to share. I am ordering your stuff! Thanks for the hard work and your desire to share.

Reply

Jordan Reasoner March 27, 2012 at 9:36 am

Great to meet you Debbie :-)

Congrats on all the work you’ve already done to take control of your health AND your daughters!

I can relate to what you’re saying and it sounds really similar to what happened to my Mom all those years ago. I’m working on the next part of the series right now, I’m thinking there’s going to be four more all together so stay tuned. I look forward to your feedback!

In good health,

Jordan

Reply

jean March 9, 2013 at 10:17 am

Thank u JordanN u r a wealth of gr8 info. I diagnosed celiac @ 47yrs old, in my gene testing too. Do u have any info on the neuro problems associated w celiac..as I had the gluten ataxia and some ireparable cognitive issues and muscular 2 resulted.3yrs GF, still inflamation, have leaky gut, had liver tumor, osteopenia, advanced endometriosis, possible MS. Thk u and God bless u!

Reply

Mscott May 2, 2012 at 10:31 pm

It’s been a few months since I left my comment above and well, it looks like I haven’t received a reply. Sorry for being persistent on this matter, but I felt the need to comment again. You cited a study as supportive that in celiac disease patients following a typical gluten free diet for 10 years, 56% still showed signs of poor nutrient uptake due to their digestive system not working like it’s designed to. Let state in no uncertain terms that I think you are misinterpreting this study.

First of all, 56% of the subjects were deficient in one or both of only two vitamins; folate and vitamin B6. As can be clearly ascertained from reading the study, the folate deficiency was most likely due to a low dietary intake, not impaired absorption. I think this study offers clues, but fails to offer conclusive proof as to why 37% of patients had low blood levels of pyridoxal 5′-phosphate. In my previous comment I presented an alternative explanation for this.

Again, the researchers said this of the study: “our findings can hardly be explained by persistent intestinal malabsorption”. It’s perfectly fine to disagree with them, but you’re going to need to present some more convincing evidence to support your interpretation.

This post was otherwise very good, but this issue is important and I felt the need to stress for accurate representation of the scientific literature.

Reply

Jordan Reasoner May 4, 2012 at 2:02 am

Mscott – thank you pinging me on this again, I appreciate that. You bring up a great point and I welcome that, it helps to collectively make this information better for everyone, so thank you for adding to the conversation.

I agree, it could be as simple as the lower average daily intake of folate on a GF Diet. I think the fallacy of my series has been that I approached it from a lens that GF was a lesser choice of diet as compared to a paleo/primal diet of whole foods, which has been shown to contain 891 µg (or 223% of the RDA) of folate (see page 14 for Dr. Cordain’s paper: http://www.ana-jana.org/Journal/journals/ACF5FB7.pdf). So from that perspective, the collective argument of the series is congruent with your statement as well.

Obviously, the way this specific study by Spectracell was conducted could lead to many plausible mechanisms, and it’s definitely not causality, so your point is quite valid. And I’ll admit, the context I framed this point was likely too far toward causality, so I appreciate your feedback in that way.

I think where we can probably agree, is that the GF Diet isn’t the best diet choice for a Celiac, and there’s better choices out there for recovery, and life-long health. Do you agree?

I look forward to your response and thanks again,

Jordan

Reply

Mscott May 5, 2012 at 10:07 pm

Jordan- I absolutely agree. Treating celiac disease with a gluten free diet alone is like treating a stab wound by simply making sure the knife isn’t still in the wound. This is among many things we probably agree on.

Your site is awesome and my small contentions don’t take away from the fact that I think your work as a whole is really important and helpful to a lot of people. I appreciate the response.

-Morgan

Reply

Linja March 19, 2014 at 11:39 am

Re: folate – I recently learned about the MTHFR genetic mutation and how it interferes with absorption of folic acid and B12. Many of us have at least one copy of this abnormality and for us, the folic acid that is added to foods and supplements does not work and may even interfere with folate status!

Reply

gorettia knight July 3, 2012 at 10:12 am

Thanks for the information on this site. I knew something wasn’t right when I had been eating gluten free (very strict on diet…) and the test my doctor did still showed high positive results. And still after eating gluten free (still very strict) I have many unexplained symptoms that keep popping up. After reading your information, I better understand why…so I will PRAY more and let God take care of me (His temple).
I appreciate getting this information. I was beginning to wonder if this was just all “in my head”.

Reply

KNC July 7, 2012 at 7:37 am

WOW, that just sent me spiraling into depression. Do you really have to phrase it that way? If we’re going to go down that road, then everyone on earth is dying slowly each day in his or her own way. Why are you focusing on this without any alternative solutions currently available? What is the point of writing such an overtly negative piece? Have you read studies about how negativity kills, too? GEESH!

Reply

Jordan Reasoner July 7, 2012 at 12:49 pm

Hi KNC – I’m sorry that you felt so negative after reading it. I feel very strongly that us Celiacs need to do more than eating gluten-free. There’s so many of us that aren’t getting better, even though we’re supposed to.

In my next post of the series, I give the first step toward a solution: a Paleo/SCD diet instead of gluten-free junk food.

I’d highly recommend you read it: http://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/

If it helps pick you up, check out my story of recovery to see where I’m coming from here: http://scdlifestyle.com/jordan/

Let me know if you have any questions,

Jordan

Reply

Darcy Burchell April 24, 2014 at 7:20 pm

IM ONLY 18. This literally terrified me to tears that I’m going to get lymphoma cancer or other types of cancer and that I’m going to die quickly. Especially since I accidentally eat cross contaminated food all the time. ):

Reply

Andrea July 11, 2012 at 3:20 am

This is all very interesting to learn. I was diagnosed about five years ago with celiac, and did “fairly” well with the diet, however still had a lot of symptoms. In the last 2 yrs. I have not stuck to being gluten free at all and just eat what I want, so now I am feeling even worse! Does anyone else have a hard time sticking to all gluten free foods, I am a picky eater as it is, and any loaf of GF bread I have tried is terrible (like eating a kitchen sponge). I was also wondering, now that I have moved to Memphis, I need a Doctor. What is the best way to find one that knows about celiacs? I have not been seen in over 3 yrs. with no insurance, Thanks!!!

Reply

Steven Wright July 20, 2012 at 3:30 pm

@Andrea – Sounds like you need to follow the exact program that Jordan did. Our SCD Lifestyle program. We’ve had many celiacs with the same story as yourself see amazing returns of health doing it. If your serious about your health you’ll make the decision to change your eating habits. It’s a value problem not a taste problem.

Reply

Kim Shah July 12, 2012 at 3:11 pm

I think many people don’t heal because they may be eating contaminated foods. I have spoken to a few celiacs, myself included that cannot tolerate Gluten Free Oats. If you’re eating this type of thing everyday, try eliminating it. Also processed foods that are not certified GF are risky. (for example, the pre shredded cheeses have an anticaking powder, that could have anything in it.) The more vigilant you are, the better your chances for recovery. Good quality vitamin supplements are also important. I noticed a HUGE difference once I cut out the oats…and that means a lot of gluten free snacks with oats are off limits. Eat whole , real foods, with an identifiable source.

Reply

Lynne July 25, 2012 at 10:38 pm

Jordan, Thanks so much for taking the time to help us all here. I really appreciate the information. Please allow me to share my story and dilemma.
After 10 years of being strictly gf, I have been questioning if I could possibly have Refractory Celiac
Disease. It has been proven I am indeed GF for ten years now, but still am in
bathroom 20x a day with either bright yellow or bloody d. I was diagnosed with
crohns too, but the new dr. disagrees with both diagnosis and isnt sure what Ive
got. He thinks because Im overweight I cant have either. This is what a decade
of steroids does! So I am getting another opinion. I have been bounced from
dr.to dr. for about 2 decades now. The flare ups are coming closer and more
intense. I go in to the er for i.v.s dilaudid,script for hydrocodone. The bentyl
and lomotils dont work at all. Soon as Im out of hydrocodone,within a few days its
another bad flare up. The pain is in the center of my stomach a little to the
right. Gallbladders out,intermittent pancreatitis and enlarged liver and spleen.
In 05,abnormal mucosal patterns with scalloped appearance in jejunum were found
with lesions, multiple erosions in body and antrum of stomach, always blood in
stool and trace in urine.A few years ago I went through weekly iron infusions for 4 months when I was 1/10 of a point from needing a blood transfusion. Now from all the steroids,Ive got diabetes.I have had capsule endoscopies that go through too fast or get stuck, other tests and gotten scolded for having to go to the bathroom during the test,as soon as the anesthesia wears off Im in the bathroom with diarrhea again. Im up
before 6 in the bathroom and sometimes it wakes me up between 1 and 6 as well.
Its been so long and so frustrating. Ive also got panniculitis which accompanies
crohns,on my legs and now neck.I feel like theres inflammation and it is constantly relocating. Now, Im back to food allergies again. According to the allergy testing though I have no allergies.( Yet, I do have hives and anaphlyactic reactions) after having a latex reaction last week while getting blood work. I have stayed away from it,all drs and hospitals I’ve been going to are all latex free, but not the neurologist office. The next week Ive been getting red dots and blisters around mouth after tomatoes. Last month it was hives from berries. Im anaphlyactic to shellfish and melons and latex too,especially airborne. If anyone has any suggestions, please send them
to me.It has been so hard on my 6 kids and husband and has affected him keeping jobs too. This is so disruptive and frustrating. Ive also had entocort for a year,have gone without eating for 2 weeks, several times in attempt to clean out my system
and still nothing different. I have learned a lot from this article and will try the scd again and for a longer period this time. I have tried it in the past. I guess, since it has taken so long to get to this point, it will take a long time to get out of it.Thank you. Lynne

Reply

Wheat Free Diet July 27, 2012 at 9:31 pm

Wonderful! I’ve been searching for info like this , thanks for posting, wheat free diet.

Reply

Andrea August 3, 2012 at 11:13 pm

Hey guys, Just wanted to say, I just tried the GF pizza from dominos…not bad at all!!!

Reply

Steven Wright August 6, 2012 at 12:39 pm

@Andrea – Not sure what to say other than I hope you re-read the Celiac series that Jordan wrote.

Reply

Darcy Burchell April 24, 2014 at 7:23 pm

They cut it with the same pizza cutter that they use in regular dough all day. Do you have an allergy? How do you not feel the agonizing pain of cross contamination?

Reply

Junaid Butt August 17, 2012 at 5:53 am

My 9 year old daughter was diagnosed with Celiac about a year ago. I had been complaining to the doctor that she had been slowly but steadily falling down the growth chart since age 4. It took 4 years for the doctor to get convinced when she had fallen from 80th percentile on growth chart to 5th percentile over the course of four years. She has been on a gluten-free diet for 9 months now but still hovering around 5th percentile. she only gained 3 lbs and 2 inches in this 9 month period. She will be 10 in October and is only 49.5 inches and 52 lbs. I am really worried about her growth. At what point should one start wondering if she needs some growth hormones as well since the gluten free diet is not working.

Anyone with children in similar age group can help with sharing their story.

Thanks

Reply

Jordan Reasoner August 18, 2012 at 6:30 pm

Hi Junaid, this is a story that I’m beginning to hear too often. The bottom line is that gluten-free might not be enough.

Have you tried Paleo or SCD?

This article will explain why that would dramatically help her:

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

I wish you both good health,

Jordan

Reply

Marielle Krogh September 3, 2012 at 10:17 pm

Thank you very much for this informative article.

I received a celiac diagnosis about 1.5 years ago. I also have Dermatitis herpetiformis. Due to my doctor’s lack of knowledge in regards to post antibiotic damage, cross reactions to food and nutrition for celiacs, I was pretty much left on my own to wade through the sea of information online from various naturopaths and Chiropractors whom I have come to greatly respect and admire. I have since turned my back on the modern medical paradigm.
When I first went gluten free, I did experience the relief of many of my most severe symptoms but as time went on, a deep tissue sickness still resided and I couldn’t figure out why, for the life of me. I was still plagued with disturbing symptoms, such as undigested food in stool, chronic skin inflammation/acne, exhaustion, depression, and an addiction to sugar and gluten- free carbs. I was essentially starving for nutrients and in desperation, tried all the gluten-free food to fill up on calories, which turned out to be just empty calories, creating greater gut imbalance.

I adopted a high raw food diet of fresh fruit and veggies and STILL the sickness persisted. I was beyond fed up. One day, my friend dyed my hair and I broke out in a horrid rash all over my face and chest. I knew then, I was seriously toxic and my body couldn’t withstand ANY more chemical load on my already overloaded body. I decided to dig and research more into this and a light came on for me. I recalled how I had broken out in oral thrush the previous year. I realized I was suffering from fungal candida and the effects of years of antibiotics, really, the real reason for my leaky gut to begin with and …. CELIAC.

I found this amazing, amazing treatment plan called, ” The McCombs plan, ” and I just finished the four months of treatment. The plan reverses fungal candida back to its’ normal yeast form, boosts the immune system to get rid of it, unloads the body of years and years of toxins through a sweat and water protocol and then reestablishes the intestines with good bacteria. For the FIRST time in my gluten free journey, I feel more well than I have ever felt.

Dr. McCombs also helped me to understand how fungal candida, leaky gut, and celiac create hydrochloric acid imbalances, too. I’ve started taking HCL supplements and digestive enzymes and for the first time, I don’t feel like I’m starving to death. I’m actually absorbing nutrients.

Thank you so much for your work in the celiac community and for getting the truth out there.

Reply

Kayla September 11, 2012 at 11:42 am

Great, medical journal “research” trying to set the stage for pharma companies to sell us some drugs. CAN’T WAIT!

Reply

Steven Wright September 14, 2012 at 11:40 am

@Kayla – I can’t tell if your being sarcastic but if people would stop using the big pharma drugs when their are other holistic alternatives then they wouldn’t be able to sell them. There is only a market for products in which people buy them. Never forget we all have choice.

Reply

lisa truitt October 14, 2012 at 10:43 am

The research cited provides a lot of useful info on what is happening in the guts of celibacy and what is causing it and can be done to heal. Yes, pharma companies will try to capitalize ooff of celibacy by developing new drugs but I’m not sure what that has to do with us using the info these studies provide to heal through natural means.

Reply

lisa truitt October 14, 2012 at 10:47 am

Celiacs, stupid auto correct! Gotta watch it like a hawk. Need to turn that thing off.

Reply

Jordan Reasoner October 14, 2012 at 3:26 pm

Great points Lisa, thanks for contributing to the article. Very funny auto-correct ha-ha!

Jordan

Reply

Shawn October 23, 2012 at 1:51 pm

I applaud your effort to spread the word! You are doing a great service!
I don’t have Celiac but am highly gluten sensitive. I know that now but getting here was a hard and painful road that lasted 12 years. I have been struggling with many health issues, including neurological problems. The past 6 years have been the worst, involving SSRI hell and Benzodiazepines hell, plus weaning off. After seeing 16 different specialists and many test from MRI, EEG, Gastroscopy, Endoscopy to sleep labs, it was through the kind of information that you provide on the internet that I was able to put 2 and 2 together. I started with GF which seemed to help at times but 80% of the time it was back to square one. Finally, after starting Paleo diet I’ve been reborn. Now I spend all my time spreading my finding and am encouraged by people like yourself. Keep up the great work!!!

Reply

Jordan Reasoner October 24, 2012 at 2:18 am

That’s awesome Shawn, way to keep working on taking control of your health. You rock man!

Thank you for the positive message, I really appreciate you and what you’ve been through.

In good health,

Jordan

Reply

Gary Lubbik October 29, 2012 at 12:48 pm

After a bill-roth operation I went at my Doctors order on a gluten free diet. I almost died due to the basic nutrition that a regular diet provided.

Reply

Jordan Reasoner October 29, 2012 at 1:50 pm

WOW, thank you for sharing that Gary – you’re amazing!

Jordan

Reply

SGRhapsodos October 29, 2012 at 3:27 pm

I’m sorry to disagree, but the primal diet was nothing short of disastrous for my health. I think it’s a good diet for men, but as a woman it killed my hormones, sex drive, left me with horrible constipation, and triggered binges like I’ve never had before. While I agree that the gut needs to be healed, eating a diet of animal days and no carbohydrates puts you up for nutritional deficiencies, not to mention social anxiety. After failing at paleo/primal miserably, I eat a balanced diet including gluten free grains and with lots of supplements, including probiotics. I agree thr processed gf products are crap, but saying that nutritious foods are bad for you is an exaggeration.

Reply

Steven Wright October 30, 2012 at 10:58 am

@SGRhapsodos – Thanks for sharing your story. We don’t advocate a zero-carb diet unless it’s needed specifically for your medical condition. It sounds like to me that you had some metabolic issues happening before you started a zero-carb diet and that type of eating hurt them even more. Sorry that you had to go through that and I’m happy to hear you’ve found a better health now.

I completely 100% disagree with you and assert that a grain-free diet is very beneficial and healthy for women and men. And our following and the success stories on this site prove it as they are mostly women. The research at this point is pretty conclusive for a host of reasons the most allergenic foods are grains and processed foods. A properly sourced and eaten SCD/Paleo/Primal diet is much more nutritious than any grain containing diet.

Reply

content.yudu.com November 3, 2012 at 12:55 am

Thanks for finally talking about >The Gluten-Free Lie:
Why Most Celiacs Are Slowly Dying — SCD Lifestyle <Liked it!

Reply

manal November 7, 2012 at 3:49 am

Thanks, how would celiac affect my pregnancy now? I had a premature child and was about to give an early birth to the second. They are healthy 9 and 7 children now. My first has attention problems and my second was born with poland syndrome. He is extremely smart and not much affected by the problem.
I had three miscarriages after, usually an empty sack or the baby doesn’t grow from the beginning. Now, I am 33 weeks pregnant. I just found out that I had celiac about two months ago. I started the diet immediately. Just before going on the diet, my blood hcg went as low as 7 and my sugar was only fifty. It was the first time I had such bad results. I started the diet and my doctor prescribed 3 feromin tablets a day. I have just tested yesterday and my hcg has gone up to 10.7 .Will celiac still affect my baby or cause a premature birth? I went to a check up yesterday and my gynecologist commented that my placenta was a little bit going down but it was not sth to worry yet. I reminded her of my history. For my first child, I had no problem whatsoever. I was just sitting down browsing the internet and found blood in my clothes. I went horrified to the hospital and they told me I was having problems with the placenta. I was hospitalized and gave birth three days after. What’s going on? Any comments?

Reply

Jordan Reasoner November 9, 2012 at 4:38 pm

Hi Manal, it’s wonderful that you caught it ASAP and you’re making change. I think you’re on the right track.

I’d highly recommend you check out our friend Chris Kresser’s Healthy Babe Code class. He will really help explain what to eat:

http://healthybabycode.com/signup

In good health,

Jordan

Reply

Carol Lovett December 5, 2012 at 8:02 pm

Thank you for this article. Gut healing is often an after thought in the gluten free world.

Reply

Martin December 20, 2012 at 11:56 pm

Celiacs believe the foods that cross the intestinal barrier (gluten++) is the only enemy and they work very well to eliminate it. Yet most do nothing to actually improve the intestinal barrier to stop gluten crossing to the bloodstream. Example: they believe that alcohol if gluten free is harmless. So wrong! The evidence of how alcohol damages intestinal lining is piling.

Reply

Jordan Reasoner December 22, 2012 at 12:29 pm

Great point Martin!

Jordan

Reply

Shannon January 3, 2013 at 8:49 pm

I was 17 when a dermatologist diagnosed me with dermatitis herpetaphormis back then they did not know much about celiac and so forth so I was told don’t eat gluten but if I do take dapsone and I won’t break out. Fast forward to the latter half of my 30’s I’m at work and loose the ability to focus my eyes so off to the emergency room and guess what I have a GI bleed! After I get an EGD and blood work I am diagnosed with celiac which now they know you can’t have DH without celiac but for years docs knew I had DH and not one of them ever caught it they never said a word about celiacs! Even when I was pregnant with a hemoglobin of 7 did anyone say hey you might have celiac! I was slowly bleeding from my gut. Even knowing that I am a candidate for cancer of the small bowel I find it hard to stay gluten free it sucks! I also have thyroid disease and read they often find celiacs associated with that.

Reply

Beverley January 6, 2013 at 1:43 pm

People….it is not the gluten or grains that is causing the problem….it is….the…GMO bacteria in your gut that is creating holes in your intestines and the gluten is getting through…plus, other foods that get through create havoc on your body…so…you need to get the gmo bacteria out of your gut…how? Mutate, mutate like the bugs…find out what foods are gmo and quit eating them…corn, soya, conola, sugar(all sugar in north america, except, organic or cane sugar is all gmo….if it kills the bugs by blowing up their guts…you don’t think it will do the same to you? This gmo bacteria in the plants can not be killed, as far as we know…so..we need to heal the holes in our guts, with, beneficial bacteria food…fermented…also…the gmo bacteria takes over our benifical bacteria cells and then goes to work to do its job…what is the job of this gmo bacteria? To kill whoever eats it…It has a job to do and it does it well…what is gmo bacteria, how is it made? They took a gene from a cell of a bacterium, and put it into the corn, conola, soya, etc…and it became one with the plant…oh, well, what type of bacteria is this? It is one that targets the guts and tears them down…it has a job in nature, tare the weak down…does not die..you can’t cook it to death either.so…stay away from gmo…No one outside of north america are screaming about the gluten…wake up..nobody wants our gmo…why…we are being mass murdered here in North America…so it seems…

Reply

Fallon January 8, 2013 at 6:57 pm

Hi Jordan!

I am so happy to have found this article becuase it takes the words right out of my mouth. I have been diagnosed with celiac disease, gut dysbiosis and leaky gut. Healing can be quite the process. Thoughout all of my time researching this same info and spreading awareness on my blog, as you have here, I stumbled upon the GAPS Diet. I am so excited to start it in order to heal and seal my gut! You are so great for writting this and for your inspiration.

XOXOX Fallon

Reply

Jordan Reasoner January 9, 2013 at 1:34 am

So happy you found it Fallon, my mission is to write the info I was desperate for 5 years ago when the GF diet didn’t work for me.

Please check out more of my Celiac series here: http://scdlifestyle.com/category/celiac-disease-series/

In good health,

Jordan

Reply

Jess January 13, 2013 at 11:21 pm

Hi Jordan, I just came across your article after seeing a link posted on Facebook. I think you did a great job summarizing the luck of mucosal healing for celiacs despite being on the gluten free diet. I have been following an (almost) Paleo diet the past few months and have overall been feeling great, except for a few times when I’ve been exposed to carrageenan. I’ve found that it causes me tremendous GI upset followed by joint pains and lethargy. Do you have any information about carrageenan? Do you recommend avoiding it? (I am guessing that the answer is yes, as I cannot see any sources of carrageenan in your recommended diet). I am trying to get the word out because I feel that those of us who are Celiac should not be consuming this additive. Thank you! Jess (The Patient Celiac)

Reply

Steven Wright January 14, 2013 at 8:50 am

@Jess- Yes Carrageenan is toxic, it is not allowed on SCD.

Reply

Amber January 16, 2013 at 11:43 am

How sad :( its been two years since I was diagnosed…two years of constant stomach pain, horribly itchy rashes, nausea, lethargy…I’m sure you know how it is…I am only 20 and it’s just so hard to stay away from the foods I used to eat everyday. Sometimes my stomach feels like its rotting from within T-T my fiancé doesn’t have celiac so it’s hard for him to understand how terrible I truly feel sometimes because of it. I am so scared because I want to have children and live a long life for them but now, I’m not sure if I will even make it that far…

Reply

Mindy Jones January 18, 2013 at 8:09 am

Thanks so much for posting this information! I have celiac disease, and the gluten free diet helped slightly, but i continued to become sicker and weaker and so sluggish mentally. The first time I read this article, I thought it sounded a bit crazy. But as I became intolerant to more and more things, I began to search for the underlying cause out of desperation. Everything I read here made so much sense. I ordered Breaking the Vicious Cycle, and began the diet. What a difference it has made!!
My 8-yr old daughter has been very sick as well. She suffered with nausea and vomiting with fatigue, and the specialists couldn’t seem to find any answers. The symptoms, to me, fit reflux in children exactly. So I put her on the diet as well, and since the second day she has been back to normal. It such a blessing to see her running and playing instead of sleeping and vomiting.
I have a question for you as we’ll, if you don’t mind. I have been having some symptoms return (none to the same degree as before the diet), and I’m certain the cause is fructose. Honey, especially, causes immediate trouble. But I feel like I need to eat fruit at least, to keep the scd from becoming a low carb diet. Should I eliminate it for a while for the sake of healing? What do you recommend?
Thank you again for your help. I’m sure you can imagine the great blessing your sharing this information has been to me! It was truly an answer to prayer.

Reply

Steven Wright January 18, 2013 at 4:06 pm

@Mindy – We are big believers in 2 things. 1. listen to your body and 2. Proper Testing . I think if a food is causing you pain it’s best to cut it out. And follow up with some advanced GI testing to get a better understanding of any root causes that are causing your issues.

Reply

Susan January 24, 2013 at 4:23 pm

Okay – I am very interested in what you have to say, but I don’t have time to read all these posts and testimonials – can someone tell me just straight forward what I need to do besides eat gluten free?

Is there a menu – list of foods? A book? I”ll buy the book, but I need to know what to buy…

Sadly,
Susan

Reply

Jordan Reasoner January 24, 2013 at 9:07 pm

Hi Susan, please review our book here: http://scdlifestylebook.com/

Jordan

Reply

Krista March 12, 2013 at 2:50 am

I am not sure if I have celiac or not but, the more I read the more I am convinced.i have always had terrible heartburn, and always get really sick. I have had pancreatitis and I dont drink, the drs could not understand why I had it, and how I survived it. I was in icu for 2 weeks.Thankfully I lived that was in 2006, since then my digestive system has been out of wack. I have type 2 diabetes,joint pain, heartburn, diarrhea all day long, I look like I am 9 months pregnant after I eat, I get numb all over my body, I just feell generally unwell. I had a colonoscopy done about z month ago, they say everything looks good and cant figure out what is wrong with me.i also developed asthma last year and have not been able to breathe right since. However, I went to er about 3 weeks ago cause I had a flare up as I like to call it the dr told me to stay off starches so I did because my fasting blood sugar was 223, just until they could figure out whats going on with me. Low and behold 2 daysc later I felt better than I have in 10 years. I ate a sandwich and felt terrible instantly, throat completely constricted.so I began the process of elimination with food.noticed gluten has played a part in all my problems, needless to say I have been gf for 2 weeks now and wow what a hard diet when u r of Italian descent. The only thing is I dont have common celiac problems like im reading here.i have a hard time losing weight no matter how much diet/exercise I do as well as all the diarrhea I experience, I dont have rashes but my skin is itchy. So judging by my symptoms is it possible that I have celiac. Drs have not mentioned it at all. All they keep doing is trying to kill me off with steroids and antibiotics that I refuse to take and never fill. I know there is something that they are missing and I think I have stumbled upon it, however this is me self diagnosing. I have found this blog completely interesting and quite an information overload. But I would love any input on why I am only 36 and feellike I am 76. Also today I ate popeyes red beans and rice and got totally sick instantly does it contain wheat?

Reply

Sara March 13, 2013 at 11:14 am

Thank you for this article, my mother died with celiac disease when i was a teenager and i have always had so many questions about why she didn’t get better when she followed the diet meticulously, this brings closure for me.

Reply

Scot March 14, 2013 at 10:25 am

Thank you so much for this article. My wife has been battling for a very long time and I don’t think most people realize how sick and encumbered being gluten intolerant can make a person. She’s quite fatigued most days and though she avoids G like the plague, it seems like there an extremely high incident of cross contamination or other food irritants in play. I won’t just ramble on here…what is the fix? Will a cleans/detox aid in any way? Thanks in advance!

Reply

meryl roach March 29, 2013 at 11:38 pm

amber don’t get caught up in worrying. get on gf diet ,then follow up with other diets to find a good one. read the book of john and follow it to the t. i have cd and do good most of the time. but have the poops for 2 mnts now. the doc gives me domperodome or some crap, i didn’t want ot take it as it speeds up the guts , went from a goose to a water hose, no immodium would work. i quit that crap and eat at evening, maybe 2 apples during the day, slowly getting better. thanks for all who contribute to the good info here.

Reply

Zac April 20, 2013 at 4:02 am

Jordan & Stephen,

I was diagnosed with celiacs disease almost two years ago now. I did not immediately start a gluten free diet because I thought there’s know way this disease is what’s causing my stomach bloating so severe it’s hard to breathe. The disease almost sounds like a joke, well I’ve found out this disease is no laughing matter! After roughly 25-emergency room visits last year I’ve been on a gluten free diet, although very difficult to me I’ve seen a dietician learned a thing or two and have managed to do it. I still feel horrible my stomach is bloated 24/7 I have a hard time just getting it through the night. I have a wife & son now and stresses of everyday life like anyone else but I’m having a hard time functioning making it through the night getting sleep to function at work the next day. It’s because all night my stomach is bloated I burp so much all night I can’t breathe well my legs tingle my everything hurts I heart stomach all night! I stumbled across your website by typing in google can celiacs disease kill you? Well I’ve learned it most certainly can or can increase your chancing of getting something else that will. I’m just having a rough time making it through the night and any advice or thoughts would be appreciated. This is my first time ever posting anything online but here I am 3am again and just feel like I’m going to death like my stomach will explode. The sounds and pain felt from my stomach is so severe. I’ve seen my Gi doc over and over had three biopsys and one colonoscopy and no help except telling me over and over again I have celiacs.

Zac

Reply

Scott May 8, 2013 at 1:53 pm

In the study reference in the beginning of the article about higher cancer rates, I think an important fact was omitted from the referenced study titled, “Malignancy in celiac disease–effect of a gluten free diet.”

According to the study,

“The results indicate that for celiac patients who have taken a GFD for five years or more the risk of developing cancer over all sites is not increased when compared with the general population”

GREAT NEWS – SHOULDN’T THIS BE PROMOTED JUST AS HEAVILY?

Also the alarms that celiac are slowly dying might be over exaggerated since the other study
(Small-Intestinal Histopathology and Mortality Risk in Celiac Disease) clearly states,

“In this population-based study, we examined risk of death in celiac disease…. absolute excess mortality risk was small, especially in children…. “

It goes on to say,

“It is also likely that individuals with diagnoses before generally available autoantibody screening were more often symptomatic and had high disease activity and, consequently, a higher mortality rate”

“…After the first year of follow-up, HRs decreased and were 1.26 for celiac disease, 1.41 for inflammation, and 1.27 for latent celiac disease.”

AND FURTHER,

“In conclusion, we found increased HRs for death in individuals with biopsy-verified celiac disease, inflammation, and latent celiac disease, although absolute risks were “small”. Individuals undergoing small-intestinal biopsy in childhood had increased HRs for death. Cardiovascular disease and malignancy were the main causes of death in celiac disease.…. We cannot rule out that preexisting disease contributed to the overall increased risk of death.“

I get the point of the article but I feel that these facts should have been included which would have presented things in a much more balanced, less stressful way. I understand from a Marketing perspective that dramatic headlines tend to focus people’s attention, allowing the marketer to guide & direct their attention more easily but we’re here because we like what you’re doing and enjoy great helpful content. No need to break out the “big monsters” on us. Just present the facts as facts. We’ll still buy your books and support your efforts.

I’m not trying to offend you in any way. I like what you’re doing sincerely. Just trying to raise consciousness on this point in hopes that we can keep it all really real and balanced.

Reply

Freya May 11, 2013 at 9:28 pm

Great website and thanks. My son has continued to be very sick on a gf diet. He was diagnosed w celiac disease two years ago and he’s been sicker and sicker-vomiting frequently- multiple times per day sometimes. we’re digging into lots of possibilities, (have had a round of antibiotics for possible sibo, are doing an mri, etc., etc.). At this point, he’s off all grains, legumes, dairy. Getting close to paleo- the most recent info I’ve found which might be giving him a positive change is removing carrengeenan ( http://www.crohns-sanity.org/forum/index.php?topic=12836.0 ) and trying Dr fasano’s gluten contamination elimination diet. ( http://www.biomedcentral.com/content/pdf/1471-230X-13-40.pdf ). Hope this info might help folks in a similar situation!

Reply

Chad June 23, 2013 at 8:18 pm

My Celiac caused me so many issues, I couldn’t hardly eat a thing without becoming violently ill because my leaky gut was so bad, eggs being the worst culprit!
Here’s a little brief summary of what I did to heal my leaky gut, and get my inflammation under control! This might not work for you, but it’s what help me regain my health and not feel like my Guts were on fire!
I started making Homemade bone broth in a crockpot using grass fed beef marrow bones, looked like brown Jello when each batch was finished!
I stopped ALL grains including rice, and also eliminated all nuts. Went to a local farmer and bought grass fed beef! The only Dairy I kept in my Diet was FAGE plain Greek yogurt and aged cheddar cheese
My typical day of eating went something like this

Morning : 1 cup of bone broth
1 pound of grass Fed Beef
1 Cup Of FAGE Plain Greek Yogurt with Really Raw honey
1 Organic Banana

I would typically eat this meal 3 times a day, sometimes cooking the Beef in Keary Gold unsalted butter, and use Pink Himalayan Salt on the burgers!
At times I would change it up and replace beef with Free range chicken, and add strawberries and blueberries to my Fruit bowl with the FAGE yogurt and Really Raw Honey! Also took 40,000 units of Serrapeptase 3 times a Day to help with the inflammation. Never eat any veggies as they cause me
Inflammation. HUGE turn around in my health, and surprisingly go to the restroom with ease eating 3 pounds of red meat a day! Make sure and drink lots of bone broth to heal your permeated intestines! Really hope this helps someone that is suffering like I was!

Reply

haya August 3, 2013 at 7:07 pm

You know why celiacs don’t recover? Because they’re still eating grains. And many grains act like gluten on the digestive system. You can research it.

Reply

Sharon November 14, 2013 at 11:09 pm

The best advice I can give is to stay away from 1. gluten (obviously) 2. food additive/emulsifier carrageenan (made from seaweed) and seaweed containing products 3. MSG/MAG #2 and #3 trigger gluten-like symptoms for me and many celiac folks. I am fortunate in that I have no other food issues – can eat oats that are clean from field to factory, corn, soy, etc. My only real problems are eating out where I will occasionally get contaminated. You have to be ever vigilant as I made the mistake at this always reliable restaurant of ordering something with cashews – that often are packaged in a factory and/or on equipment that processes wheat. Big mistake – two years since my diagnosis I should have known better.

I have helped numerous fellow celiac patients by telling them to eliminate foods with carrageenan…one person said “look these candies made me sick, but there is no wheat or gluten on the label” but the hard coating had carrageenan! Any celiac who has not healed needs to avoid carrageenan at all costs and try a good elimination diet, and many are now recommending FODMAPs elimination – these certain sugars and substances in even natural foods like fruit that many GI diagnosed patients have an issue with in terms of causing GI inflammation that may prevent healing.

Reply

Sharon November 14, 2013 at 11:17 pm

Oh yes…I try hard to maintain an anti-inflammatory diet – lots of vegetables, low amount of fruit, little sugar or alcohol, healthy fat fish, etc.

Reply

Julie January 11, 2014 at 9:42 pm

I was diagnosed with Celiac Disease and Gluten Ataxia at the same time. Fortunately my Gastro (Dr Scot Lewey), is a brilliant Celiac doctor and had me on not only a GF diet, but also high strength prescription probiotics, some anti-inflammatory meds and another medication to help me digest food better.
I was interview for an article coming out in March for Living Without magazine about my story.
I never had gut symptoms. It looked like I probably had MS.
I will be taking pro-biotics forever. I eat eat nutrient dense, lots of healthy fats, organic and unprocessed diet. No dairy or sugar. Food is medicine.
My life is almost normal. However there are still episodes that are typically caused my hidden gluten….it happens to even the most vigilant. My gluten ataxia episodes last three to six weeks. They include walking difficulties (I have to use a walker, cane or wheelchair), cognitive problems including significant memory issues, extreme fatigue and increased neuropathies. Loads of fun!
I was bed-bound most of 2008 before diagnosis. Today (2014) I can work-out for over an hour a day. I still struggle with brain issues, but am being proactive in trying to overcome that. “Grain Brain” book seems to have some key insights in this area.
Thanks for this site!

Reply

Cathy Saxton February 8, 2014 at 3:30 pm

Jordan Reasoner,

Accidently found and been reading your article about Celiac Disease and SCD. Also read comments by others. I was diagnosed with Celiac Disease in 2013 by biopsy that I requested. I have dealt with so many of the symptoms over 60 years of my life that I could write a book. Is it possible that you could email me some information of how to keep your digestive system intact with CD besides a gluten-free diet? What blood tests should be monitored closely and last information about the SCD diet? I saw you had a site for this which I will start reading. The email that I’m requesting is a condensed form that I may copy and take with me to my primary doctor so we can work together.

Thank you, Cathy Saxton

Reply

Jordan Reasoner February 8, 2014 at 6:21 pm

Hi Cathy, read this one next.

I wrote this article because it’s what I would have wanted to have years ago when the GF diet wasn’t enough to help me get better.

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

J

Reply

Geo February 9, 2014 at 6:05 pm

Just starting to get into an scd. Been having stomach probs for 2 months. Started around the time I took a bet to drink a glass of chimichurri sauce mixed with 2 shot glasses or more of schriracha hot sauce (I know, not smart. Won some money at the time, but definitely lost in the long term.) Tests were negative for crohns, colitis, diverticulitis, and celiac. Small intestine biopsy presented as celiac disease, patches of flattened villi. But blood tests came back negative for celiac. Just curious if anyone else has had or seen issues like that. Negative for celiac, but showing similar symptoms….inflammation of digestive system and flattened villi. If so, what did it end up being, how did you heal it, and how long did it take? I have 6 days of a ppi (dexilant) left. After that, going to try and rely on scd and natural products such as slippery elm, l glutamine, and aloe vera. Along with probiotics, healthy eating, and weight lifting. Any input would be much appreciated. Thank you.

Reply

George February 10, 2014 at 2:06 pm

Hi guys,

Excited to learn and discover more about your website. Stomach issues started about 2 months ago after drinking a glass of chimichurri sauce and schriracha hot sauce on a dare (I know, stupid, but I can’t change that decision now unfortunately). Anyway, colonoscopy, endoscopy, and 2 blood tests later, results have come back negative for crohns , colitis, diverticulitis, and celiac. However, the small intestine biopsy showed flattened villi, and inflammation in the stomach and duodenum. But the blood test results from a month before and immediately following the biopsy came back negative for celiac. Currently on a ppi (dexilant) of which I have 6 days worth left. After that, I would like to try going scd and natural remedies, l glutamine, slippery elm powder, probiotics, and aloe vera. The dr. says I did a number on my stomach and it’s going to take time to heal, but he doesn’t think it’s celiac. I guess my question is, given the sudden onset of symptoms after my ingenious idea to accept that bet, could it truly just be major stomach damage and not celiacs? I’m exhibiting signs like trouble breaking down foods, trouble regaining the weight that I lost when the stomach problems were really bad a couple times, bloating after eating, along with the flattened villi. Has anyone else ever had issues like this without celiac eventually being the root cause? If so, how did you fix it/heal, and how long did it take? And if so, would the scd diet and book applt to and also help my situation? Thanks for your help.

– George (33 yrs old….as of today…all I want for my birthday is no more stomach problems….please help)

Reply

Jessica February 18, 2014 at 5:13 pm

Finding your site today and reading just two of your articles has literally reduced me to tears of fear. I thought that I was doing all that I possibly could by following a gluten-free diet so I have been ignoring increasingly worsening symptoms that I now know are due to vitamin deficiencies and inflammation. My celiac disease and resulting symptoms are so bad that I can barely get though the day. Life is just a matter of existing. I am paralyzed by hopelessness at the overwhelming amount of information on this site. I can’t calm down enough to take it all in without crying because I don’t know where to start. I can’t just go out right now and BUY books BUY food BUY my life back. Your information has opened my eyes but it’s also an overload.

Reply

Michelle April 6, 2014 at 8:33 pm

So I was diagnosed when I was 5 and I’ve been on a strict gluten-free diet since then. I’m 13 now and my villi should be fully healed right?

Reply

valeria May 14, 2014 at 2:46 pm

I completely disagree with the title you choose for your article. I believe it is extremely misleading.
I think everyone in doubt should contact a doctor instead of reading this. You are actually scaring people by saying that we are going to die sooner. Please double check research on cancer! And ask physicians!
Still… I would like to say that no matter you heal faster or more slowly, you HAVE to follow the diet!

Reply

Rachel May 19, 2014 at 8:40 pm

What I find most frustrating is the fact that gluten is in everything. Literally. Lip balms, toothpastes, mouthwashes, hair products, ketchup, salad dressings, soy sauce, brown sauce, OTC drugs and prescription drugs.

The second most frustrating things is the reality that while people who are not going through the hell of DH/Dermatitis Herpetiformis or Celiac, they scream at you, go gluten free as if it is a cure all that occurs for everyone without fail and overnight. Ugh!!!!!

Reply

Rhiannon Wootres June 5, 2014 at 5:26 pm

This article is very strongly worded and has moved me to a terror I don’t often feel. I’m sure intentions are good, but fear mongering is the last thing celiacs need right now. I hear what you are saying. I agree, and I have some thoughts on what might help us get better, but right now all I can do is think abut how completely terrified I am.

Reply

buy steroids greater sudbury September 27, 2014 at 12:01 pm

Hi just wanted to give you a brief heads up and let you know a few of the pictures aren’t loading properly.
I’m not sure why but I think its a linking issue.

I’ve tried it in two different browsers and both show the
same outcome.

Reply

Lori Jo Berg September 28, 2014 at 2:23 pm

Hi, thank you for reaching out! Perhaps you can try a different browser to see if that solves the problem. I am currently viewing the article in Google Chrome with out any issues.

Reply

Leave a Comment