“Borderline” Coeliac Disease: A little review!

button print grnw20 Borderline Coeliac Disease: A little review!

I’m back with a study to share!

You’ll find the reference at the bottom, but this study deals with patients who were coping with problems ultimately related to gluten (1). They had been dealing with a number of gluten-related issues but would not necessarily be diagnosed with coeliac disease. I will get more into my thoughts after I explain what happened, so read on!

Patients were selected because they were suspected for coeliac disease and a number of gastrointestinal symptoms (falling under the category of weight loss, diarrhea, abdominal pain, flatulence, slow gastric emptying, chronic fatigue, or canker sores) or because of their unexplained/unresponsive diseases (things like iron-deficient anemia, hair loss, onychodystrophy [nail malformations] hair fragility and epilepsy). Needless to say, they investigated these patients for coeliac disease, but they didn’t fall under the category. However, they were suspected for “borderline” coeliac disease, since they were all displaying some form or other of intestinal damage, and were thus advised to go on a gluten-free diet. However, they couldn’t be diagnosed properly because the serology tests that were conducted did not show a consistency that could point to definite coeliac disease. Regardless, a gluten-free diet was recommended.

So what happened next? Well, 23 patients stuck to the gluten-free diet and had a follow-up biopsy 8 to 12 months later. The other 12 patients sadly refused to take on the diet, but seven of them at least consented to a re-evaluation 8 to 12 months later as a control group. I should identify that all of the patients in the entire study displayed either Marsh I or Marsh II criteria lesions, indicative of the level of intestinal damage (Marsh III is diagnosed as coeliac disease). More on that here.

In all of the patients on the gluten-free diet, follow-up demonstrated general improvement in the markers that were tested (again however, these tests were inconsistent with patients’ intestinal damage) and any intestinal damage either improved or disappeared in most patients (while some had persistent lesions). Regardless, all of their other symptoms – the ones I addressed early in this post – either improved or disappeared; the majority in which, they disappeared. Remember, this includes the improvement of an unresponsive anemic condition! Or epilepsy! Not just some bloating and gas, people!!!

Those who didn’t go gluten-free didn’t prove so lucky. The blood tests remained virtually unchanged and lesions persisted. Their other symptoms did not go away either and one patient actually developed full-blown coeliac disease. This woman’s symptoms became worse; she developed Marsh IIIa criteria lesions, and was suddenly testing positive for tests that had previously tested negative (if you care, they were sorbitol H2-breath tests and antibody tissue transglutaminase tests, and are used to help indicate the level of damage in the small intestine of coeliac patients).

This study is indicative of a few things:

  • If experiencing any of the symptoms mentioned above, this could be indicative of a gluten problem, of which may not (at least, yet) be considered coeliac disease
  • If diagnosed as a “borderline” coeliac, going gluten-free should be considered mandatory for health… I imagine this diagnosis confuses many patients today and keeps them from making the right choice, as some of the patients in this study did
  • Serology tests for coeliac disease seem to be much more effective only when diagnosing full-blown coeliac disease – the science is not perfect yet!

It also points out something that not everyone realizes and I want to clear up right now… YOU ARE NOT NECESSARILY BORN WITH COELIAC DISEASE! This is a common misconception, and because of it, many cases of coeliac disease are undiagnosed.

All the patients in the study ranged in age from 22-51, and it should be noted that the degree of intestinal damage and the range of symptoms present do not correlate with age. Some of the older patients only displayed Marsh I lesions, which may imply that this is not a condition they have had all their life. It is very possible to develop coeliac disease at an older age, and people who don’t realize this may often either never be diagnosed, be diagnosed much later, or be misdiagnosed with another complicated disease. A huge one of these misdiagnoses – and it makes me cringe every time I hear about it – have been some cases of iron-deficient anemia (IDA), because doctors often treat symptoms, not causes. And what’s a good cause of IDA? Malabsorption! If someone has persistent anemia that is unexplainably not getting better, there’s a chance it’s related to a gluten problem (at least as high as 15% of cases have coeliac disease (2,3) and that does not include gluten sensitivity statistics). By the way, a gluten-free diet won’t fix things overnight… if you want results, prepare to be gluten-free for at least a year before you see a change (4). In some people however, the results are there in as short as 6 months. Again, this is with coeliac disease. Those with gluten sensitivity will find that any gluten-related symptoms they’ve experienced will usually disappear much faster – it could be a matter of only days. The science isn’t fully there for gluten sensitivity and associated IDA, but it has been suggested that it can alter iron absorption as well (though existing studies are confusing as to whether the condition is or isn’t coeliac disease, as patients are exhibiting intestinal lesions… see the third reference for an example).

I can’t help but wonder if all of the patients in the study would have eventually developed coeliac disease if they had never adhered to a gluten-free diet, or if they just would have continued to suffer from symptoms and lesions. Gluten sensitivity typically does not usually entail any intestinal damage (5), which would suggest that the concept of “gluten-sensitive enteropathy” (enteropathy = disease of the intestine) does not exist. But if those suffering from it do not exhibit the serology markers of coeliac disease, under which category do they fall? I guess part of the problem is that gluten sensitivity is still kind of a loose term, despite the effort of scientists to define it. At the same time, coeliac disease may also be too tightly defined.

Anyway, I thought it would be good to highlight this study because it falls between coeliac disease and gluten sensitivity, in that it borders between the understandings of the two conditions. I wanted to point out how gluten may affect those who may not realize or want to acknowledge it. My recommendation? If you think you have a problem, get tested for coeliac disease. If your results come back semi-positive with the suggestion of coeliac disease, go gluten-free without question. If they come back negative, see if a gluten-free diet makes you feel better anyway (this idea pertaining more to gluten sensitivity, which is completely different from coeliac disease). If that doesn’t solve your problem, it’s something else causing it, and I wish you luck with finding out what it is!

- Gloria

 

References:

1)      Tursi, A., Brandimarte, G. The symptomatic and histologic response to a gluten-free diet in patients with borderline enteropathy. J Clin Gastroenterol 2003;36(1):13-7.

2)      Lapid, N. Anemia and Celiac Disease. 2009. Retrieved from http://celiacdisease.about.com/od/symptomsofceliacdisease/a/CeliacAnemia.htm

3)      Zamani, F., et al. Gluten sensitive enteropathy in patients with iron deficiency anemia of unknown origin. World J Gasteoenterol 2008;14(48):7381-5.

4)      Annibale, B., et al. Efficacy of gluten-free diet alone on recovery from iron deficiency anemia in adult celiac patients. Am J Gastroenterol 2001;96(1):132-7.

5)      Sapone, A., et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Med 2012;10:13.

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