There is a portion of people in the celiac disease community who actually don’t feel better on a gluten-free diet.  Hard to believe.  I think I would have gone crazy if my daughter had that diagnosis and then didn’t improve on the diet.

A new study published recently in BMC Gastroenterology shows not only concern for these individuals, but has a solution that could help a good portion of them.

The Celiac Research:

The study was performed among current non-responsive celiac patients at the University of Maryland Baltimore’s Center for Celiac Research over the last few years.  It investigated concerns that non-responsive celiacs could end up with a refractory celiac disease diagnosis and may have to undergo more intensive immunotherapy.  And they wanted to see if going on a stricter gluten free diet would work– before starting immunotherapy. Refractory celiac disease Type 1 and Type  2 are of specific concern.

  • The University of Chicago Celiac Disease Center describes patients with RCD-1 as having a “good response to treatment with steroids or azathioprine and a good prognosis”.
  • This new research says RCD-2 is the more serious and “carries a higher risk of developing eteropathy-associated T-cell Lymphoma, and overall leads to a shortened life expectancy with a 5 year mortality estimated between 50-60%”, the research states.

Recent studies have shown many non-responsive celiacs actually are knowingly or unknowingly getting gluten in some way.  So the first step for these patients was to meet with the dietician and rule that out.  Secondly, researchers performed the necessary testing (serology and biopsies) to find out where these patients were at physically; plus they gauged symptoms. Then they put them on what they called a Gluten Contamination Elimination Diet.

The research questions whether the non-responsive celiac group cannot tolerate  20 parts per million of gluten daily.  ”There is a tremendous degree of variablility within this population and some patients may have worsening histological changes with very low daily gluten exposure”, the research states.

What they found was for 79% of the patients, the Gluten Contamination Elimination Diet (GCED), not only helped them, but after 3-6 months, they were able to go back to the standard gluten-free diet with no problems.  ”Interestingly, the fact that the majority of the patients in our study were subsequently able to return to their previous strict gluten-free diet, suggests that there is a degree of recovery that, once established, shifts these patients back to a more typical threshold of gluten reactivity”, the research said.

Six of these patients had been diagnosed with refractory celiac disease type 1 and may have been proceeding toward immunotherapy, but five of them, after eating the GCED no longer met refractory celiac criteria!

What is the Gluten Contamination Elimination Diet?

Okay, so I know people who have gotten to this point in the article are dying to know what is involved with this diet, because either you or someone you know may have these lingering issues despite being so very careful about their gluten free diet.  This is where I say– I am not a doctor. I am not recommending anyone just start this diet.  You should consult your own physician first!.

But I have to say I too was dying to know…and the study laid it all out.  The goal is to get out any possible contamination of gluten out of the diet. So it basically is a whole foods kind of a plan — and no shortcuts.

Grains allowed:  Plain, unflavored brown or white rice
Grains NOT allowed:  millet, sorghum, buckwheat and others

Fruits and vegetables allowed:  All FRESH fruits and veggies
Fruits and vegetables NOT allowed:  frozen, canned or dried

Proteins allowed:  Fresh meat, fish and eggs, dried beans and unseasoned nuts in shell
Proteins not allowed: Lunch meats, ham, bacon and other processed, self basted or cured meats

Dairy allowed:  butter, unflavored yogurt and milk, aged cheeses
Dairy NOT allowed:  seasoned or flavored dairy products and processed cheese

Condiments allowed:  Oils, vinegar, honey and salt
Condiments NOT allowed:  flavored and malt vinegars

Beverages allowed:  100% fruit/vegetable juice, gluten free supplemental formulas like Ensure, Gatorade, milk and water

*Please consult with your doctor before going on this diet
**Courtesy:  Research:  ”Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients”  BMC Gastroenterology, February 28 2013 

I thought this was valuable information and if you want more specifics, please read the research on your own.

If you think that you or someone you know may meet this non-responsive celiac criteria, I would recommend engaging a conversation with your doctor about this.  I am slowly learning about refractory celiac disease, but it sounds like it is nothing to mess around with.  If you don’t feel good, don’t put up with it.  Please explore other possible solutions with your physician and start feeling better!

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4 Responses to “More Specific Gluten-Free Diet May Help Non-Responsive Celiacs”

  1. This study included an “asymptomatic” person… We must all remember that a lack of symptoms is not a guarantee that our diet is working. We should be demanding safer foods.

  2. Gluten-free packaged foods are quite a bit more expensive than regular foods. But, honestly, the availability of things like gluten-free cookies and pancake mix is more of a quality of life issue than a nutritional one.

  3. I do believe that eliminating gluten contamination is just one possibility of how the diet helped. The other is that the whole food diet improved the intestinal barrier to the extent that neither trace gluten nor any other food particles are able to cross to the blood stream and trigger autoimmune response.

  4. I have read the research and agree that this type of diet should be helpful to many celiacs who aren’t experiencing symptom relief from a traditional gluten free diet. However, this type of diet should be done in consultation with your doctor, and a baseline check of the villi in your small intestine before and after the diet should show if any improvement had actually taken place. I would find a doctor who specializes in treating celiac disease. And maybe a dietician as well to help you navigate this diet, as it may be difficult for someone to attempt sticking to the diet without proper support. I am going into the diet gradually, taking away the gluten free grains first. (I was already on a gluten free diet)Abstaining from drinking coffee will be tough for me but I guess I can do it for 3-6 months.

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