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May 22, 2014


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Dr Rodney Ford

Karen Broussard
Here is my open reply

I entirely agree with you that support groups of celiac disease and gluten sensitivity should work together. I'm sure both groups agree.
Both groups are promoting a gluten-free diet, I call this a gluten-zero diet, to emphasise the need for zero tolerance for gluten in your diet.

However, the disagreements are real and I believe that they are generated by factual errors and lack of knowledge.

1) I would like to state that most people who are gluten sensitive DO produce antibodies to gluten (this is contrary to your statement). There is a large literature on this. AGA (anti-gliadin-antibodies) are also recommended in the Fasano paper the "spectrum of gluten related disorders", for the celiac and gluten sensitivity work-up. I use them on a day-to-day basis In my Clinic, and so do many other practitioners. it is likely that gluten sensitivity is an immune mediated condition. However, the putative proteins have yet to be identified.

2) I agree that people with celiac disease, and people with gluten sensitivity, have an identical list of symptoms. They are also equally harmed by gluten. My recommendation for people with gluten sensitivity is to be zero gluten. You suggest that cross contamination may not so important for gluten sensitivity. However, most of my gluten sensitivity patients would strongly disagree with you. Most are exquisitely sensitive to gluten.

3) You state categorically that "celiac disease and gluten sensitivity are two very distinct conditions". I think that it would be more accurate to say that the only difference between the two conditions is that the people with celiac disease have the capacity to develop intestinal damage (villous atrophy) at the end stage of celiac disease. Celiac disease is a progressive illness. Early on in the development of celiac disease, the person may have significant symptoms, they may have elevated AGA antibodies, but they may have no evidence of intestinal damage. At this stage these two conditions are indistinguishable.

4) How early can you diagnose celiac disease? Do you have to wait until there is substantial intestinal damage so that you can make the classic diagnosis with villous atrophy? Or do you keep on eating gluten until the damage has occurred? Or do you go strictly gluten zero and not know if you are gluten sensitive or have early celiac disease? The HLA gene (DQ2/DQ8) cannot be used as a casting vote. it is my recommendation to abandon gluten as early as possible and not wait until you have substantial intestinal damage which may never heal.

5) Not only is the gluten intolerant community (ehis includes celiac) confused about gluten. Also, the medical fraternity is confused. The science and clinical issues are rapidly developing whilst most medical practitioners are still looking for the classic celiac with weight loss, malabsorption, and a bloated tummy. Many people request celiac tests of their GPs but are denied the test. The community is much more aware of gluten related disorder than medical practitioners.

Yes, there are a lot of issues to think about. These illnesses that are related to gluten are complicated and tricky. My prediction is that increasing numbers of people will adopt a gluten zero diet. However, almost certainly it is much more than the chemical gluten that is making us sick. It will take a long time to unravel all of these strings. Most people are after an easy answer. But I'm sure that it is going to become even more complicated as we learn more.

This is written in the spirit of cooperation and knowledge sharing.
Dr Rodney Ford
Pediatric gastroenterologist and allergist

Heather Jacobsen

Thank you for this letter, Karen.

I fall into the NCGS camp. Whether that’s because I stopped eating gluten ten years before any doctor was willing to test me for Celiac, and thus results were non-conclusive, or because I stopped myself from developing the disease as soon as I was aware that gluten was making me sick… we can never know. But I can say that without a doubt, that the tiniest bit of gluten is no good for me.

And, especially after media blasts like the most recent one that came out about Gluten Sensitivity being all in our heads (http://www.stuffed-pepper.com/is-gluten-sensitivity-all-in-your-head), I often feel even more isolated from the Celiac community, because I don't have an official paper that says that gluten makes me ill. But people like me need the support of the Celiac community, and vice versa, because no matter what illness you want to call it, if gluten is causing you problems, then we are all in this together.

Thanks, as always to Dr. Rodney Ford for his continual work in raising awareness of Gluten Sensitivity, and for elucidating some of the more lesser known facts of the disorder. I'd like to second his point that Celiac Disease may just be the end point of the disorder, and if we can stop more people from developing it, isn't that a good thing?

We are having more discussion on this topic on my blog post (in which I mentioned your post here), in case you want to peak in... (link above).

Sending you a virtual handshake... ;-)

Heather Jacobsen
Stuffed Pepper
You & Me. Beyond Gluten-Free.

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