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Gluten-Free Logic: The Three Steps

Journal of Gluten Sensitivity Summer 2015 Issue - Originally published July 16, 2015

Celiac.com 10/27/2015 - In 2006, I presented a research paper called "Who warrants a gluten-free diet?". At that time I was thinking about the sick children who were coming through my clinic with skin, gut and brain symptoms: that is they had eczema and itchy skin; sore tummies and constipation; and behaviour disturbances. It turned out that most of this group of children had high levels of Anti-Gliadin-Antibodies (AGA), of whom 80% got completely better when they went on a gluten-free diet. This was a landmark paper for me, and it led me to describe "The Gluten Syndrome".

Image: CC--Anders SandbergHowever, that was nearly 10 years ago! and a lot has happened since then. Perhaps most notable the publication of the consensus paper on the Spectrum of Gluten-Related-Disorders. The algorithm developed to diagnose gluten sensitivity/ intolerance relies on the elimination and challenge of gluten, rather than immunologic blood tests. I have been using the AGA test in my clinic since 1989 (that is for 25 years!) and I have found it extremely useful as a diagnostic test, when it is positive. But, many people react to gluten and have negative AGA results. So I agree with the authors of the "Spectrum" paper. The basis of a gluten-sensitivity/intolerance diagnosis should be based on elimination and challenge. Importantly, prior to removing gluten from your diet, please ensure that you get the appropriate tests for celiac disease (see this link for a gluten-blood-test discussion).

So who in the year 2015 should be suspected of having a gluten-related-illness? Well anyone who has chronic symptoms. Even if they have a diagnostic label - because they might have the wrong diagnosis. so here are the 3 steps in my gluten-free logic:

Step ONE - the premise IF:

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  • a) Gluten sensitivity is common: estimates show it affects over 10% of the population;
  • b) Gluten-related illnesses are varied and have multiple symptoms: a quote from the consensus paper on the Spectrum of Gluten-Related-Disorders emphasizes this. The symptoms in gluten sensitivity may resemble those associated with celiac disease but with a prevalence of extra-intestinal symptoms, such as behavioral changes, bone or joint pain, muscle cramps, leg numbness, weight loss and chronic fatigue. Their symptoms include abdominal pain (68%); eczema and/or rash (40%); headache (35%); "foggy mind" (34%); fatigue (33%); diarrhea (33%); depression (22%); anemia (20%); numbness in the legs, arms or fingers 20%; and joint pain (11%);
  • c) There is no definitive diagnostic test for gluten sensitivity: the Consensus paper goes on to say "However, currently there are no laboratory biomarkers specific for gluten sensitivity. Usually the diagnosis is based on exclusion criteria; an elimination diet of gluten-containing foods followed by an open challenge is most often used to evaluate whether health improves with the elimination or reduction of gluten from the patient’s diet";
  • d) There is no harm from going on a gluten-free diet; in other words a gluten-free is healthy.

Step TWO - The logical THEN:
Then the logical conclusion is that "anyone", with "any symptoms" that are "chronic and unexplained" (that is they do not have a definite diagnosis) and "at any time" (people can develop gluten-illness at any time in their life) should be put onto a gluten-free diet for a clinical trial for three months or more.

Step THREE - The CONCLUSION:
The logical conclusion is that whatever the blood-test results, and whatever the endoscopy results, and whatever the symptoms, a beneficial response to a gluten-free diet suggests that their illness is gluten-related (some people might demand a double blind food challenge).

Comment
Up until now, most gluten/celiac doctors have dismissed the idea that their patients might be suffering from "non-celiac gluten-sensitivity" (NCGS). They have attributed their patients beneficial response to a gluten-free diet as a placebo response (all in their head!). This is clearly not the case. There is mounting evidence for this: see this research paper - Small Amounts of Gluten in Subjects with Suspected Nonceliac Gluten Sensitivity: a Randomized, Double-Blind, Placebo-Controlled, Cross-Over Trial. In this paper the authors conclude: "In a cross-over trial of subjects with suspected NCGS, the severity of overall symptoms increased significantly during 1 week of intake of small amounts of gluten, compared with placebo".

The above logic means that ALL people, with ANY undiagnosed illnesses, at any TIME in their life, should be given a gluten-free trial. This is likely to have huge health benefits and wide ramifications on the management and burden of ill health on the community. Already 10% of Australians and Canadian are adopting a gluten-free diet, and 30% percent of adults in the USA are interested in avoiding or cutting down on gluten in their diets, says a survey from the NPD Group, a consumer research firm. NDP has been following gluten-free issues since 2009 and its January 2013 survey revealed the highest interest in gluten-free diets yet (reported in HuffPost - 26 Feb 2015).

It is my prediction that in another generation most people who wish to stay healthy, will choose to adopt a gluten-free diet, before they get harmed by gluten.

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5 Responses:

 
Bea Hord
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said this on
27 Oct 2015 4:40:07 PM PDT
I have been on a GF diet for 30 years and am now 84 years old, and will be glad to share.

 
Katrina
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said this on
02 Nov 2015 5:08:33 PM PDT
Completely agree with Dr Rodney, I have celiac 6 years diagnosed but primarily nerve-related symptoms.

 
Mary Thorpe
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said this on
02 Nov 2015 9:27:04 PM PDT
Thank you for your voice of logic, Dr. Ford. I have thought for a long time that anyone who has chronic, unexplained symptoms should try the gluten free diet, after, as you mentioned, first getting tested for celiac disease. I had two big symptoms but also many minor symptoms I never would have suspected to be from gluten that all disappeared after adopting a gf diet that has led to a far superior quality of life. Even today, after 17 years, something will pop into my mind that makes me realize "that doesn't happen to me anymore." For instance, I no longer routinely get bronchitis after a cold (and, in fact, rarely even get colds). No more recurrent strep throat, canker sores, muscle spasms and subluxions, esophageal spasms, white spots on my finger nails or heart palpitations, besides the biggies of chronic migraine and diarrhea. I am not diagnosed celiac because I tried the GF diet on my own and didn't have the testing first. But I know I never looked back.

 
Mary Thorpe
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said this on
02 Nov 2015 9:38:25 PM PDT
P.S. I am glad to hear that you find the AGA to be very useful. When I worked for the Center for Celiac Research (15 years ago), the tTg test was on the verge of making the AGA obsolete and I argued strongly for keeping it in the arsenal which caused a bit of conflict there! I tried to improve the sensitivity of the assay by expanding the ELISA target to other gliadin molecules besides alpha but don't think I knew to include deamidated gliadin. But I felt strongly in my gut that there was more to gluten sensitivity than celiac disease and it's nice to feel vindicated.

 
Janet Newman
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said this on
03 Nov 2015 6:47:09 AM PDT
Love to hear that gluten sensitivity is being treated as real. I went gluten free 4 years ago because of sinus allergies. 3 doctors were not helping me. I went gluten free on my own. At first I could fudge a little. Then I realized that I had stomach pain and diarrhea every time that I ate gluten. I have had stomach problems for over 20 years that the doctor could not figure out what was the cause. I might add that I have suffered with eczema most of my life. I became more diligent at staying off the gluten. Over time I realized that my restless leg problem is severe when I get a hold of something with gluten. This usually is from cross contamination at a restaurant. It is like my body was fighting a war inside while the outside of me just wants to go to sleep. Gluten free is my normal life now. I will never go back.




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I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha

Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body. Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free