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The Gluten Contamination Elimination Diet (Summary Of Dr. Fasano's Recent Paper)

Posted by jebby, 08 March 2013 · 5,543 views

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.

Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.

The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:

Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.

Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.

17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.


It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!

Reference: “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. 2013. 13:40 (e-pub).

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Thank you so much for posting this, and the reference too!
 

I was put on a very similar diet by my doctor because I got muchbetter but not fully well on a gluten-free diet even if I seem to only have NCGS. My blood panel negative, nurse here told me gluten would make no difference to me; so I went ahead and gluten-free; felt much better but not "normal" yet; doc in Italy put me on a diet pretty much like the above - he calls it the "grandma's diet" minus rice and beans (I cannot yet tolerate them) and plus coconut flour - that's the only exception to that list  :)  It is helping me a lot. I hope it will work for you, too!

 

Best,

Maria

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Hi Maria,

Thanks so much for reading and commenting. I am glad that you are feeling better on the "grandma's diet." It truly makes so much sense for us!

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I am going to remember to check this.  I haven't scratched out buckwheat, but it is on my lists of suspects.

 

How are you checked for healing?

 

Diana

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I am going to remember to check this.  I haven't scratched out buckwheat, but it is on my lists of suspects.

 

How are you checked for healing?

 

Diana

Hi Diana,

The "gold standard" would be a repeat biopsy, but I think that for a lot of us who decide to go this route, we would expect to feel a lot better and experience much less cross contamination.

Jess

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I, too, was put on Dr. Fasano's diet. It has been wonderful. It isn't easy but I highly recommend it. 

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Thanks BitterGrad for sharing your experience. I hope that in the (not to far) future that Fasano's diet becomes the standard of care for newly diagnosed Celiacs. Had I known of this back when I was diagnosed, I would also have stuck with whole foods for the 1st 3-6 months. 

Jess

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I ended up banning buckwheat and discovered it was indeed a big problem for me. 

 

I am checking my nutrient absorption to check healing.  It seems reasonable to me.  Great progress has been made the past 7 months! 

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I ended up banning buckwheat and discovered it was indeed a big problem for me.

I am checking my nutrient absorption to check healing. It seems reasonable to me. Great progress has been made the past 7 months!

That is such great news that you are feeling better and realizing that certain gluten-free grains do not work for you. Quinoa really did a number on me in the beginning.
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I've been gluten free for a couple of months. At first I was feeling great, but I wasn't eating any grains. I just couldn't swallow them. Then I added BRM "gluten free" grains and felt like some of my symptoms returned. Quinoa for example tore me up for days, and I couldn't figure it out until I read about cross contamination. I'm trying to go off grains again, but I feel like I'm starving all the time. I recently made rice and curry, when I read that curry could help with inflammation.

...It was not pretty, and I thought that rice was the culprit. Then I read the curry label and saw it was proceessed in a plant that processes wheat. I'm going to try rice again and see how it goes.

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Hi NoPainNoGrain,
Thank you for sharing your story. It sounds like your intestines may not be fully healed yet (and, hence, not ready for grains). I hope that you find a diet this works for you.
Jess
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