The Celiac Disease Diet: Why Gluten-Free Isn’t Working (and What to Do Instead)

by Jordan Reasoner

Celiac-Disease-Diet-Isnt-Working

I was ready to give up hope…

Years of diarrhea…

Chronic Fatigue…

Depression…

Anxiety…

Acne…

I was slowly dying…

And things just kept getting worse.

The doctors didn’t know what was wrong with me.

Until one appointment, when I finally convinced my Gastroenterologist to order an endoscopy. A few weeks after the procedure, I got a pamphlet in the mail from her called, “Living Gluten-Free,” with a hand-written note that said:

Jordan, Tests showed you have Celiac disease. Follow a Gluten-Free Diet and you’ll be just fine.”

Ummm, what? What’s Celiac disease and what’s gluten?!? How could gluten be causing all these problems in my life? I’ll really be just fine if I change my diet?

I can’t help but wonder how many people around the world get the same prescription I did.

Some call it Gluten Free…

But I have a different nickname for it: The Celiac Disease Diet. Why? Because of a very important reason – a reason that almost killed me.

The Celiac Disease Diet Isn’t Working (and Is Making Celiacs Sicker)

It’s widely accepted that the first step in treating Celiac disease is removing gluten from the diet with 100% strictness. In fact, this is the treatment plan copied right from the National Library of Medicine and typical of most doctor-patient conversations after a diagnosis: [1]

Celiac disease cannot be cured. However, your symptoms will go away and the villi in the lining of the intestines will heal if you follow a lifelong gluten-free diet. Do not eat foods, beverages, and medications that contain wheat, barley, rye, and possibly oats.

You must read food and medication labels carefully to look for hidden sources of these grains and ingredients related to them. Because wheat and barley grains are common in the American diet, sticking with this diet is challenging. With education and planning, you will heal.

While removing gluten exposure is critical to the treatment of the disease… it isn’t THE only treatment. It’s just part of it. The danger lies in the promise that people with Celiac disease, who follow a strict gluten-free diet for life, will fully heal.

When I followed a strict Gluten-Free diet for 2 years, believing I would be “just fine” and STILL had diarrhea 5-10 times a day, I came face-to-face with insanity.

In fact, things got a little scary when I was absolutely convinced I was getting “gluten contamination” from everything (like the dishwasher, cooking pans, silverware, water, air, kissing, breathing, whatever). It reached the lowest point when I thought I couldn’t eat anywhere but my own kitchen without getting “glutened.” But the reality is: it wasn’t gluten contamination at all.

The Celiac Disease Diet wasn’t working for me…

It turns out I wasn’t alone.

The latest Celiac disease research is painting a scary 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.” [2] 

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.” [3]

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.” [4]

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 fully 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,” a.k.a. inflammation in the gut. [5]

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.” [6]

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.” [7]

Both of 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 Alimentary Pharmacology and Therapeutics Journal, 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.” [8]

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 Celiacs are likely starving for the critical nutrients required for health and longevity. It’s no wonder we have a 77X increased risk for lymphoma.[9]

The Gluten-Free Diet Doesn’t Fix Leaky Gut

I’ve written about gliadin and how it initiates leaky gut by increasing the zonulin protein in people with Celiac disease. And later, about how 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, [10]

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 disease.

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.” [11]

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

It breaks down like this… high inflammation, poor vitamin status, and leaky gut persist on the Celiac Disease 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 [12]

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. 

That’s part of the reason I fought for my diagnosis, why I pressed my doctors to get the tests I wanted, and why I followed my Gluten-Free prescription with the strictest adherence.

Yet I still suffered from life threatening symptoms. So much so that I wrote my first will at the age of 24 because I didn’t think I’d live much longer unless they miraculously figured out what else was wrong with me.

Then, I got lucky and found a new doctor with new ideas about what it meant to treat Celiac disease – a new doctor that finally helped me stop my diarrhea for the first time in 6 years.

I’m one of the majority

One of the 60% that didn’t get better from a Gluten-Free Diet alone…. I needed to do more to treat my Celiac disease.

How to Tell if The Celiac Disease Diet Isn’t Working for You

If you have Celiac disease and you’re following a conventional Gluten-Free Diet… but still experiencing any of these symptoms, the Celiac Disease Diet isn’t working for you either.

(Remember, only 50% of Celiac Disease symptoms actually occur in the digestive system.)

  • Recurring bloating and cramping
  • Chronic or recurrent diarrhea
  • Constipation
  • Nausea
  • Liver and biliary tract disorders
  • Weight loss
  • Pale, foul-smelling stool
  • Iron-deficiency anemia unresponsive to iron therapy
  • Fatigue
  • Arthralgia
  • Tingling numbness in the legs
  • Sores inside the mouth
  • Skin rashes/acne
  • Tooth discoloration or loss of enamel
  • Unexplained infertility or recurrent miscarriage
  • Osteopenia or osteoporosis
  • Anxiety and/or Depression

Each of these symptoms can present themselves as part of Celiac disease and simply removing gluten can help. Many people even see a disappearance of random symptoms after they go gluten free.

However, if you have Celiac disease, and any of the these symptoms are still present… even after you’ve removed gluten, it’s likely the Celiac Disease Diet isn’t working for you. It might be providing some relief, but it’s not healing the underlying damage in your gut… which dramatically increases your risk for cancer and the other diseases I just mentioned.

That doesn’t mean all hope is lost either….

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 traditional Celiac Disease 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…

Like I almost did.

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

The real solution is fixing leaky gut. Reversing Leaky Gut is a critical step in reversing Celiac disease… and now you know that gluten-free doesn’t cut it.

That means we must fix leaky gut. That’s ground zero… where it all starts… and where medicine MUST look first when treating Celiac disease.

And as I’m writing this, I’m completely confident my Celiac Disease has been reversed because I healed my leaky gut… instead of just staying on the “Celiac Disease Diet.”

What does it mean when I say I believe I’ve reversed my Celiac disease?

I’m not saying someone with Celiac disease can eat gluten again, or that someone with a completely destroyed thyroid can get off medication.

My definition of reversing Celiac disease is this: turning off the immune attack against the body for good, and then repairing the damage it caused so you live a happy symptom-free life.

In some cases, you can’t repair the damage if it’s already gone too far. How long your body has been waging war on its own tissue will determine what “reverse” means to you. If RA goes too far, permanent joint damage can occur. In autoimmune thyroid diseases, the thyroid tissue may be beyond repair. But what if you could stop it before it even got to that point… or before it went too far?

If you or a loved one is struggling with Celiac disease, and the conventional treatment isn’t working, you know how crippling it can be. I know, because I’ve been there, too. 7 years ago, Celiac disease almost killed me.

But what if there was a way to turn off Celiac disease that ACTUALLY worked?

What if there was a way to calm down your immune system and allow it to begin to repair the damage?

Based on the work of Dr. Alessio Fasano, one of the first places to start is your gut… and we’re here to help you.

We’re hosting a free online presentation called, “How to Turn Off Your Autoimmunity — and Restore a Healthy Immune System.”

It’s completely free, and in it we dive deep into your gut health and how to begin to stop the immune system from attacking itself.

You can register for your seat here: http://solvingleakygut.com/webinar/internal-autoimmune/

You could spend years trying to figure out how to “fix” your immune system and continue suffering on The Celiac Disease Diet… or you could register for this free one-hour webinar and we’ll show you how we did it.

If you can’t attend live, we will send you the recording, but you must click here to register to make sure you get the link the next morning.

As someone who suffered with Celiac disease for years and almost gave up hope, I know your struggle. I hope you join us for the webinar to learn more about how I turned off my autoimmune response and restored my health.

I’m so grateful to support you in health.

-Jordan

P.S. – You can register for our autoimmune presentation here (it’s completely free to attend): http://solvingleakygut.com/webinar/internal-autoimmune/

 

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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

{ 15 comments… read them below or add one }

Rachel @ Where The Wild Stuff Grows November 12, 2015 at 10:33 am

Wow what a great article! I was diagnosed with Celiac’s over a year ago, and although I don’t experience any digestive discomfort I still have very low vitamin levels and (all of a sudden) bad acne. I am currently in the slow but steady process of healing my leaky gut.

Reply

Mariel Heiss November 16, 2015 at 4:27 pm
Cherie November 12, 2015 at 8:26 pm

I tried to register but despite filling in the info it said I was 50% done and clicking the submit button didn’t work

Reply

Mariel Heiss November 16, 2015 at 4:35 pm
Will O'B November 17, 2015 at 5:07 am

Dr Joel Wallach and Dr Peter Glidden have some interesting ideas.

Peace

Reply

Nelson November 21, 2015 at 6:35 am

Modern funcional medicines are the
Beginning Of health status
Thanks God

Reply

Laura December 4, 2015 at 3:47 am

Thank you for your article. I am looking forward to learn more. My 5yo daughter was diagnosed 3 years ago with Celiac Disease and even though she is following a strict gf diet, her intestines are damaged. I have seen multiple experts and they don’t have answers. I truly hope this helps. How can I find accurate info on leaky gut and what diet to follow? Thanks, Laura

Reply

Mariel Heiss December 4, 2015 at 12:17 pm

Hi Laura – your daughter is so fortunate to have been diagnosed at such a young age!

We recommend our Solving Leaky Gut program – it is the next step beyond a gluten-free diet for healing from Celiac disease. You can learn more by registering for a FREE webinar here: http://solvingleakygut.com/webinar/live-qva/

I hope this helps!

Reply

Patricia April 9, 2016 at 4:30 pm

My son is nearly 4 years old and he has chronic diarreah. He has had it all his life. I have had him on a gluten free diet which did help significantly however there are other people in my sons family that give him gluten thinking it is only a little bit, and that he will be ok. I have no control of his diet when he is not with me. Doctors have found nothing wrong with him but there is definitely something wrong. I’m looking forward to hearing what you have to say.

Reply

Mariel Heiss April 11, 2016 at 3:34 pm

Hi Patricia – I hope this article helps:

http://scdlifestyle.com/2014/12/12-common-causes-of-diarrhea/

Reply

kimberly October 2, 2016 at 9:55 pm

hi, I have been celiac since i was in my late 20’s. took a while to diagnose back then , but i had chronic fatigue so bad …..all of it went away without wheat./gluten. But I still ate oatmeal and no one ever told me to heal my gut. Im now 49 and have struggled with depression 4 diff times. In March i became very ill with terrible brain fog (indecision, cant multi task or do anything I used to), depression (although this is better with d3 and lots of bible and prayer! laundry/perfume smells bothered me, was waking at 4:30am & couldn’t get back to sleep. by May I had insomnia, terrible. I thought i was going to die. I was determined not to go on anti depressent but find help. Wasn’t sure if it was adrenals or what. 3 doctors later lots of $$ and none of them were any help. It took a lot of research but my husband and i finally figured out that I had leaky gut…so we started to look for ways online to heal this. So we started with colostrum and Dr. Axe leaky gut powder. Then it was apparent after more research, that I have malabsorption because my skin was getting creepy, i was b-12 deficient daily, mag, and d3, and was still loosing weight, and the insomnia (its not my hormones already had them ck). Plus looking back at my spectracell in Aug, so many deficiencies. Calcium was one of them. My stool volume in the am was huge but always came right out, soon as I sipped lemon water upon waking. It just seems very strange that after 23 years of strict gluten free all of this happened. But no one ever mentioned I needed to heal my gut way back when I was diagnosed (i had dermatitis hepitiformis too) Im trying the scd, with what info i can find here online, but im also leaving out lectins because I read a lot about them, and Im afraid I wont be able to heal my gut if I dont go off those too? You ever meet anyone whos been gf for 23 years and all this happens? I feel so alone. I think we need a support group. Will I be able to stop malapsorbtion? and I so want my brain back. I hope? its very scarry. Its very hard figuring out what to eat but im keeping it simple, grass fed meat, chicken, or fish, and salad/veggies and some squash. What about protein like gelatin collagen beef protein? because I make bone broth weekly but I need the protein for my fruit smoothie for breakfast which makes bkfast easier since I don’t like sausage. I cant think of any other protein that would be ok in a smoothie? I buy frozen blueberries and berries and use coconut water and a handful of spinach. I was eating an egg every morning but im willing to give those up for now because i read unless they are organic and free range, how do you guarantee that? we cant always afford that plus i was eating it on a slice of gf bread and I know I cant have that. I am wondering how long I have to do this way of eating to heal? I wanted to watch the webinar but its not set til Wed. So i have to wait. thx for your answers. ps. its very hard on someone with brain fog to figure out what to eat for herself let alone her family. 🙁

Reply

Mariel Heiss October 4, 2016 at 11:36 am

Hi Kimberly – thanks for reaching out. I’m sorry you’ve been struggling, but I’m really glad you’ll be joining us for the webinar on Wednesday. I think the majority of your questions will be answered at the webinar – including what to eat and avoid and what triggers a leaky gut.

Hang in there! If you have questions after the webinar, go ahead and email us at [email protected]

Reply

kimberly October 2, 2016 at 9:59 pm

Oh I forgot to mention I have inflammation too, real bad in my right heal, side leg and knee…… so bad i can’t be on my feet long w/out resting leg/foot. and I take curcumin and tart cherry but it doesnt help. Nothing does, except maybe changing shoes for a bit.

Reply

a November 22, 2016 at 1:41 pm

Can you please come to the doctors with me? It’s been around 7 years since my first symptoms and at least 3-5years fighting with doctors. 2 years ago I almost bankrupt myself at a natural path doctor who brought to life I was more then likely celiac…..no one will diagnos me with anything other then ibs….I seriously feel like I’m going to die somedays…..even after 2 years of a strick celiac diet, which includes no vinigars and only olive oil as well as I am intolerant to dairy, even goat. Sometimes if I just stop eating for a few days, I feel better, but then not eating catches up to me and it feels like a mini stroke is coming on. Finally something came up on a blood test with thyroid and graves was the first thing the doctor said. I’m beyond my breaking point. I can hardly hold down a job because of sick days and doctor days…..I don’t want to say I hate my life because I love it and everyone in it….it’s just this celiac thing is such a huge part of my life unfortunately….it needs to stop right now, today, but I am not equipped with the knowledge or resources to even point my doctor in the right way…..is there something I can take her?

Reply

Lori Jo Berg November 23, 2016 at 3:02 pm

THanks for reaching out and I’m sorry you’re suffering. I’d honestly consider a new doctor – like the ones here: http://scdlifestyle.com/practitioners/ You could also print out each article in our celiac series and take them to your doctor but they must be open and willing to listen. Changing your entire diet along iwth going gluten free is the first major step and we’d recommend starting here: http://scdlifestyle.com/scd-quick-start-guide/

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