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    Gluten-related Disorders: Not Black and White

    Dr. Rodney Ford M.D.
    • Journal of Gluten Sensitivity Spring 2016 Issue - Originally published April 14, 2016

    Gluten-related Disorders: Not Black and White
    Caption: Photo: CC--hardtopeel

    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-celiac disease or Not-celiac disease. There is no overlap. This is an "us-and-them" scenario.

    However, isolating YES-celiac disease 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 celiac disease? 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.


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    Dr Ford,

    Insightful comments! I wish more doctors were as well read as you.  I live in the Philippines and I've never had any real help from doctors here but my reasoning has been confirmed as reasonable by a GP and a Neurologist (I'm a scientist and able to understand the biology and genetics of the celiac disease world). Here is what I have said about the matter of Gluten Sensitivity and Celiac elsewhere on this site.

    Never been formally diagnosed as celiac. But boy do I get sick when glutened. The gut reactions came on as an adult. 50ish but I’ve had neuropathy in my legs since I was 25. Although it has progressed slowly, no doctor has ever worked out the cause. My sister is a diagnosed celiac and many of my family have been undiagnosed celiacs ( bowel cancer, always sick - IBS, Alzheimer’s). I have HLA DQ 2.2 but was never serum tested while eating gluten. I got sick and stopped for 6 months before I realised I needed the gluten challenge. Never been game to make myself sick for 3 months to do it.

    Gluten Sensitivity is a genetically modulated inability to digest gluten and similar big proteins.  It is an Auto-immune condition. I don’t like to call it a disease or a disorder. We have the original human genes. Everybody else has mutated genes that allow them to digest a poison.  

    There are a range of gluten sensitivities and celiac is only one expression. Gluten can affect the brain with white holes that affect cognitive skills and may bring on Alzheimer’s and MS in some cases. It can specifically affect the cells in the cerebellum and cause gluten ataxia, it can cause schizophrenia and various mental illnesses, it can affect the skin (dermatitis herpetaformis) with symptoms that look like dengue or measles, it can affect the long nerves in the body causing neuropathy in hands and feet, (I have or have had many of the above) it can affect the thyroid (hashimotos disease) and there are another 300 related and unrelated ways that gluten may damage our bodies as well as diarrhoea, constipation etc. Many of these symptoms may occur at the same time. COELIAC IS NOT THE DEFINING SYMPTOM OF GLUTEN SENSITIVITY. It is only the first one recognised and codified. Coeliacs are gluten sensitive as we are and are part of the gluten sensitivity spectrum.

    Gluten specialists such as Dr Marius Hajivasilliou are now saying that more gluten sensitive people have neurological problems than any other and they would class gluten sensitivity as a neurological disorder rather than a GI one.

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    On 5/9/2016 at 7:35 PM, Guest Leslie said:

    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.

    Gluten occurs in wheat, rye and barley but all cereals have similar poisonous proteins designed to stop animals from feasting on their seeds.  Oats have avenin, rice has orzenin, corn has zein. I seem ok with corn on the cob but I react to corn flour, probably because of the higher conc of bio-available zein in it (most sweet corn grains pass right through...).  Even pseudo cereals like quinoa are reported to have similar proteins that are dangerous to celiacs in some strains. I eat white rice which seems ok (rice husk/germ is gone) and quinoa marketed as gluten-free which seems ok as well. Gluten and the proteins above are lectins or lectin like (Google Dr Gundry - take his advice with a large grain of salt). Other foods with high conc of lectins are nightshade family and beans.  I stay away from beans as I get bloating and general unwellness. Apparently the worst nightshade is eggplant. I eat tomatoes but generally well cooked and I think that long cooking pretty well destroys lectins. I love my version of cambodian eggplant curry and I think that the long cooking make that safe as well.  These reactions are probably quite personal and require constant testing til you know what is safe.

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  • About Me

    Dr. Rodney Ford is a Pediatric Gastroenterologist. He was Professor of Pediatrics at the Christchurch School of Medicine. He runs the Children's Gastroenterology and Allergy Clinic in New Zealand. He has written a series of 7 books on gluten (www.DrRodneyFord.com). His main theory is that symptoms from gluten reactions arise from brain and nerve damage. His latest book is "The Gluten Syndrome" which encapsulates current ideas and concepts of gluten and the harm that it does.