The world of gluten is not black and white! (I’ve been saying this for years). There is still tension between those who have ‘biopsy-proven celiac disease’, and those people so-called ‘gluten-intolerant’.
For instance, look at these two opposing comments on Facebook this week:
A. “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 distinction between celiac disease and gluten-sensitivity (the gluten syndrome) is blurred. Celiac gluten–not black and white says Dr Rodney Ford!
Heretically, in my experience these are not mutually exclusive conditions. There is a cross-over between gluten-sensitivity/intolerance and celiac disease. They cannot be put into neat boxes in a flow-chart. It is complicated, confusing and messy.
Many people who have celiac disease are also gluten-sensitive. Why do you think that they get sick from tiny amounts of gluten (hint – not from gut damage). Many people who are gluten-sensitive might develop celiac disease with continued gluten exposure, depending on their genetic markers (hint – they stop eating gluten before they get any sicker).
Celiac gluten–not black and white
There is no sharp dividing line – there is a lot of grey! The lines are blurred. But the celiac disease researchers need a tight, neat, precise definition of celiac disease: the definition has been narrowed with the inclusion of the genetic HLA DQ2/8 markers.
However, the rapidly accumulating research evidence on gluten-sensitivity is compelling. It cannot be just ignored or shouted down. The term “gluten-related disorders” is now used to cover all illnesses that are provoked or worsened by gluten. I would like to see support groups of celiac disease and gluten sensitivity work together, with a focus on their common ground. Both groups promote accurate diagnosis and a strict gluten-free diet (I call this gluten-zero to emphasize the need for zero tolerance for gluten in your diet). The ongoing disagreements, I believe are generated by factual errors and lack of up-to-date knowledge.
This comment on Facebook is a good example of these blurred lines:
“I had an endoscopy which showed some small intestine damage: increased intraepithelial lymphocytes, shortened villi and duodenitis. The gastroenterologist said I had gluten-sensitivity, but because I was not coeliac (wasn’t Marsh stage 3a) I didn’t need to be quite as careful with gluten. I am super sensitive and 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 think:
1) Many people who have celiac disease are also gluten-sensitive. Many people who are gluten-sensitive might go on to develop celiac disease with continued gluten exposure (depending on their genetic markers).
2) 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 no apparent intestinal damage from gluten. NCGS is part of the gluten-related disorders spectrum.
3) Both groups have an identical list of possible symptoms. They are also equally harmed by gluten.
4) Small bowel endoscopy and biopsy is not always reliable.
5) For both groups, my recommendation is to be zero gluten. Cross contamination is important to avoid for everyone. Both groups can be exquisitely sensitive to gluten.
6) Many people who are gluten sensitive DO produce antibodies to gluten. 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. Gluten sensitivity is an immune mediated condition, however, the full list of putative proteins have yet to be identified.
7) 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? Do you keep on eating gluten until the damage has occurred? Or do you go strictly gluten zero before the damage occurs? (if so, then you do 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, without waiting until you have substantial intestinal damage, which may never heal.
8) Not only is the gluten intolerant community (this 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.
9) Tens of thousands of people are “self-diagnosing” and going gluten-free prior to blood tests or endoscopy. They are taking their diet into their own hands because of their inability to get tested.
Many people claim: “Celiac disease and gluten sensitivity are two very distinct conditions”. I disagree!
I think that it is more accurate to say that the only difference between these two labels is that those with celiac disease have the capacity to develop intestinal damage (villous atrophy) at the end stage of the disease process. 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 not have any evidence of intestinal damage. At this stage these two conditions are indistinguishable.
Yes, there are a lot of issues to think about. These gluten-related illnesses 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 protein gluten that is making us so sick.
It will take a long time to unravel all of these threads. Most people are seeking an easy answer. But I’m sure that it is going to become even more complicated as we learn more.
By Dr Rodney Ford Food Puzzles Explained Newsletter explores the many facets of food-related-disorders.
If you would like to read more about solving gluten puzzles, then you might like to look at this ebook:
“The Gluten Syndrome” and
By Dr Rodney Ford