About a decade ago, celiac disease experts worldwide were struck by the number of individuals being seen and claiming gluten sensitivity. This came as a surprise to celiac disease experts and although we could not find an explanation for it, there developed an academic interest as more of us experienced this influx of patients.
We see that most of these individuals come to places like the Celiac Disease Center at Columbia University with two questions: Could I have celiac disease because I got better on a gluten-free diet? Or I know I’m gluten sensitive, but I’m not better on a gluten-free diet, so what else could be going on?
‘Wheat Sensitivity’ and Non-gluten Proteins
It does appear to be heterogenous population of patients, some of whom have a true gluten sensitivity manifested as gluten withdrawal or responsive irritable bowel syndrome. Others may have a FODMAP sensitivity, as Daniel Leffler, MD, MS, points out in the cover story. We are very interested in exploring the other possible causes of this syndrome and to do so, we would rather call it a ‘wheat sensitivity’ as there is interest in and questions regarding the non-gluten proteins found in wheat that we have uncovered. In celiac disease, patients have a robust immune response to some of these proteins but not all of them.
In particular, amylase triptan inhibitors or ATIs, have been incriminated in possibly being an etiological factor in gluten sensitive individuals. This is a very interesting area and it deserves more research because the gluten-free diet is very popular and all-consuming for many patients.
In groups of individuals who do not find relief from adhering to a gluten-free diet, we frequently find other conditions such as bacterial overgrowth or fructose or lactose intolerance. But often though we identify and treat that other condition, patients are very much wed to this idea that they have gluten sensitivity and will remain on the gluten-free diet. In one follow-up study, the majority of patients remained on a gluten-free diet.
When we interact with patients who come to us with a self-diagnosed gluten sensitivity, we must find what they are interested in — whether it’s finding out if they have celiac disease or whether they’re interested in making alternative diagnoses. The most important thing for the practicing physician is that the patient needs to be supported, irrespective of the reason they are on a gluten-free diet.
The best way to offer that support unconditionally is to encourage the patient to see a dietitian. The gluten-free diet is not inherently a healthy diet and it should be undertaken with the help of an experienced nutritionist or dietitian. They should be monitored by these professionals for any nutritional deficiencies that may arise from adhering to the gluten-free diet. Still, we as physicians won’t just push these patients off. We encourage them to be followed by us.
As restricted diets are not necessarily healthy, a diet history or the physician asking a patient what foods they are avoiding should be part of any standard physician-patient interaction in all specialties. It is important that physicians are aware if their patients are on a restricted diet so the physician can give the right referrals to dietitians, explain possible consequences of the chosen diet or explore if there is an underlying cause for the patient’s choice. We are seeing several patients who progressively withdraw different foodstuffs that they regard as being toxic to them. We see that group of patients as having orthorexia nervosa where they progressively identify these foods and greatly restrict their diets.
We have shown in other studies that these restricted diets, whether indicated by a diagnosis of celiac disease or not, have not only negative physical impacts, but can be mentally taxing on the patient. We, as physicians, should remember this when speaking to each of our patients and finding what truly is most beneficial to the individual’s health.
- Blackett JW, et al. Eur J Gastroenterol Hepatol. 2018;doi:10.1097/MEG.0000000000001071.
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- Zylberberg HM, et al. Eur J Gastroenterol Hepatol. 2017doi:10.1097/MEG.0000000000000932.
- For more information:
- Peter H.R. Green, MD, is Phyllis and Ivan Seidenberg Professor of Medicine and Director, Celiac Disease Center at Columbia University Medical Center.