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Gluten-related Disorders: Not Black and White

Journal of Gluten Sensitivity Spring 2016 Issue - Originally published April 14, 2016

Celiac.com 04/20/2016 - I am likely to be accused of gluten heresy. That is because I propose that celiac disease and gluten sensitivity usually coexist. By this I mean that they are not mutually exclusive entities.

Image: Dr. Rodney FordIn other words, most people who have celiac disease are also gluten-sensitive. Many people who are gluten-sensitive are likely to develop celiac disease with continued gluten exposure (depending on their genetic markers).

My observations show that the distinction between celiac disease and gluten-sensitivity (the gluten syndrome) is blurred. The purpose of published algorithms and decision trees are designed to separate out celiac disease from other gluten-illnesses. I suggest that this thinking is flawed.

For example, most flow charts go something like this: (See Flow Chart 1 at left).

People are selected for celiac-blood-tests for a number of reasons. If your blood tests are positive (and usually if you carry a DQ2/8 gene), then you get an endoscopy to confirm/deny the diagnosis. This allows you to be categorized either Yes-CD or Not-CD. There is no overlap. This is an "us-and-them" scenario.

However, isolating YES-CD from every other gluten problem does not take into account that people who have gluten-gut-damage may well have other manifestations of gluten-related disorders.

Such simplistic algorithms (decision trees) strike problems at every decision point. Such as: Who should be tested? Who should be re-tested? When should these tests be done? At what age? On how much gluten? What tests should be done? What are the cut-off levels? How important is carrying the DQ2/8 genes? What about sero-negative CD? How accurate are endoscopic biopsies? Who interprets the Marsh scale? How long should a gluten challenge be?

Such simplistic algorithms (decision trees) also do not give satisfactory answers to the following questions:

  1. Why do 10% of people with celiac disease have little or no symptoms, despite having severe small bowel damage (villous atrophy)? This group is called "asymptomatic" celiac disease. Villous atrophy alone cannot account for the majority of gluten-related symptoms.
  2. Why do half of the people with celiac disease have autonomic nervous system dysfunction? This is the disturbance of the automatic nerve activity of your internal organs. This cannot be directly attributed to villous atrophy.
  3. Why do most people with celiac disease have some brain/mental upset, including the pervasive brain-fog? Many people have neurological disease from gluten but do not have established celiac disease.
  4. How can so many "extra-intestinal manifestations" of celiac disease be attributed to intestinal gut damage alone?

I am sure that you will have witnessed strong feelings from the defenders of 'celiac-disease-is-a-stand-alone illness'. For instance, read these two opposing comments from Facebook:

  • Photo: CC--hardtopeelA. "I find it hard to believe that gluten intolerant people (or gluten avoiders) are as strict as us who have celiac disease."
  • B. "I am gluten intolerant (suspected Celiac but I refuse to eat gluten in order to be tested properly) … I am incredibly strict on what I eat."

The world of gluten is not black and white! But there remains a tension between those who have "biopsy-proven" celiac disease, and those people who are "gluten-intolerant". However, there is a cross-over between gluten-sensitivity/intolerance and celiac disease. There is no sharp dividing line – there is lots of grey!

I would like to see the support groups of both celiac disease and gluten sensitivity work together with a focus on their common ground. This is already happening in some countries. Both groups promote an accurate diagnosis and a strict gluten-free diet. But I call into question the accuracy of current diagnostic methodology.

Another comment from Facebook is a good example of these blurred lines:
"I had an endoscopy and I have some small intestine damage: increased intraepithelial lymphocytes, shortened villi and duodenitis. The gastroenterologist said I had gluten-sensitivity but because I was not celiac (wasn't Marsh stage 3a), he said that I didn't need to be quite as careful with gluten. But I know I am super sensitive - even a small piece of chocolate with gluten in it makes me sick for a few weeks. I suspect that I either didn't have enough gluten before the endoscopy, or I am in the early stages of developing it."

This is what I conclude:

  1. Both groups (people with celiac disease, and people with gluten sensitivity/intolerance) come under the umbrella category of gluten-related disorders. The term non-celiac gluten-sensitivity (NCGS) excludes those with evidence of intestinal damage from gluten. But with time and continued gluten ingestion, some of these people will develop celiac disease. NCGS is part of the gluten-related disorders spectrum (see my book: www.glutenrelateddisorder.com).
  2. Both groups have an identical list of possible symptoms. They are both equally harmed by gluten. They are indistinguishable from each other without blood tests and/or endoscopy.
  3. For both groups, my recommendation is to be zero gluten. Avoidance of cross-contamination is crucial for everyone. Both groups can be exquisitely sensitive to gluten. Some celiacs experience no symptoms from gluten, making it more of a challenge for them to remain gluten-zero. Some gluten-sensitive people do not yet have overt symptoms but are developing an inflammatory state.
  4. Many people who are gluten-sensitive produce antibodies to gluten, AGA (anti-gliadin-antibodies). There is a large literature on this. AGA-positive people are more likely to develop gluten-illnesses. AGA tests are recommended in the Fasano paper the "spectrum of gluten related disorders", for the celiac and gluten sensitivity work-up (particularly for neurological disorders). I use them on a day-to-day basis in my Clinic, and so do many other practitioners. More wheat/gluten harmful proteins have yet to be identified. Early in the development of celiac disease, the person can have significant symptoms, and they may have elevated AGA antibodies, but they may have no evidence yet of intestinal damage. At this stage these two conditions are indistinguishable.
  5. 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.
  6. Not only is the gluten intolerant community (this includes celiac disease) confused about gluten-illness. 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 (and are using an out-of-date simplistic algorithm). 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 gluten-illnesses are complicated to diagnose. My prediction is that increasing numbers of people will adopt a gluten zero diet. However, almost certainly it is much more than the substance 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, or a drug, or a vaccine. But I'm sure that it is going to become even more complicated as we learn more. These complexities do not show up in a simplistic algorithm.

The way for an individual to solve this is to adopt a gluten-zero diet, lifelong.

Celiac.com welcomes your comments below (registration is NOT required).



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10 Responses:

 
Mary
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said this on
19 Apr 2016 2:37:33 PM PST
This article is great at explaining all aspects of the connection between CD and gluten sensitivity.

 
Deb
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said this on
26 Apr 2016 1:26:26 AM PST
The fact that so many celiacs improve in only some areas of symptoms on a strict gluten free diet also says gluten is probably not the only thing making us sick. I am tired of doctors thinking that all celiacs feel 100% normal if they are gluten free. I still have a myriad of symptoms, some debilitating, and am extremely gluten free. After 15 years on the diet, my antigliadin antibodies, once off the charts, are at normal levels, anti endomysial the same, yet Ttg remains elevated. Something is still amiss.

 
Leslie
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said this on
09 May 2016 11:35:42 AM PST
What are your thoughts on gluten and grain free eating as well as limiting toxins as much as possible (if you don't already)? I have read that other grains can mimic gluten and then our bodies start attacking them too.

 
Gillian
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said this on
26 Apr 2016 4:29:58 AM PST
Forgot to say that I also suffer with Hashimotos Thyroiditis an auto-immune condition that is also helped by a GF diet.

 
celiacMom
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said this on
26 Apr 2016 5:39:23 AM PST
Excellent analysis!

 
Ryan
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said this on
26 Apr 2016 6:03:02 AM PST
I have celiac disease which is definitely an auto immune disease, and because i live in America eating wheat is usually out of the question. However, there is a restaurant near me that uses wheat farmed and processed in Europe that i eat at about once a month with no issues. My girlfriend can attest to this as well, because she has the same exact problems i do. For years i had wondered if gluten (from wheat) was the problem at all, but suspected that RoundUp or a similar toxin was the culprit. Finding out that i was in fact eating European wheat every month and not getting sick proved it to me. While i will concede that there is an extremely slight chance that some people actually have a wheat gluten allergy i would venture to say that most, if not all, people are simply sensitive to toxins in wheat from the farming and processing of it.

 
Claire
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said this on
27 Apr 2016 2:43:41 PM PST
From your mouth to primary care providers' ears. My son all but stopped growing between ages 12 and 13. He had reflux but no other GI symptoms. His antibodies weren't high enough, though, so we were told he didn't have CD. Six years later, his antibodies were off the charts. Diagnosis was confirmed by endoscopic biopsy. Genetic test revealed DQ2.5 genes. What happened to clinical medicine? Please, "experts", stop giving primary care providers simplistic disease presentations and testing protocols. Yes, most CD patients present with classic symptoms, but many do not. If a child stops growing well, suspect CD...even if he doesn't fit the typical presentation. Please.

 
Linda
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said this on
28 Apr 2016 9:53:49 PM PST
I completely agree that many people who claim to just have sensitivity (or even other illnesses, like irritable bowel syndrome) are celiac and just need to save themselves a lot misery and money and strictly avoid gluten. Most of my family are celiac, if they admit it or not. My daughter and I have stay strictly gluten free for 25yrs and my grandchildren are gluten free. We are the only healthy people in our family, literally. My sister spends huge sums of money on her family's health, when all they need to do is avoid gluten. My Mother is slowly dying because she and her doctor won't completely keep her off gluten. She has so much diarrhea that she can not maintain nutritional levels sufficient to support her life. Yet she keeps eating gluten and saying it is ok for her to just eat "less" gluten, a little bit, she says is ok...and her doctors, even the nursing home she was in, don't even seem to have enough understanding of cooking without gluten to provide her with food. At the nursing home they just slid off her plate anything they "guessed" might have gluten in it...which translated to her having only reconstituted scrambled eggs for one breakfast I knew about, and traces of other things that had been on her plat still lingered...I am appalled at the ignorance of people in positions like doctors, nutritionists, cooks in nursing homes and hospitals... in my Mother's small town it seems most people don't even know what gluten is or they think it's just another fad diet, or they otherwise don't have a clue to how serious a gluten free diet is.

 
Cherri Nelson
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said this on
29 Apr 2016 12:34:50 AM PST
I'm so happy to read this from a doctor who lays it out as more complicated than black and white between celiac and/or gluten sensitivity. I was once warned by a physician that the longer I stayed gluten free, the more sensitive I would become. I sometimes wonder these days if I'm still dealing with gluten sensitivity or if I've become a celiac based on my reactions to smaller and smaller amounts of gluten setting a host of symptoms off, some of which are painful. And I too am not going to eat gluten to take a test that can be unreliable anyway. My sister nearly died at 6 months until diagnosed with celiac in 1948. I had never been told this was something for me to watch also. It's changed my life since for the first time in my life I no longer suffer from clinical anxiety and panic attacks. You can only guess at what it did to my self esteem. Unfortunately I was in my 60s before the discovery. I so wish there would be more research on this whole issue.

 
s fricker
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said this on
17 Oct 2016 8:42:20 AM PST
If you suspect you have celiac, avoiding gluten is better than getting diagnosed. Diagnosis with this autoimmune disease will mess with your qualification for life insurance.




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