Dr. Schär Institute

No, the Low FODMAP diet is not consistently gluten-free and so it’s not equivalent to the nutritional advice given to coeliac patients. Neither does a wholesale low FODMAP diet take into account individual intolerances and it cannot replace proper nutritional consulting.

Basically, the information “traces of” is a piece of information voluntarily provided by the food manufacturer, because it is not covered by the Food Information Regulation. Neither is there any definition for what “traces” really means in quantitative terms. The only products that we can be certain of are those on which the phrase “gluten-free” is written on the packaging. These products have a proven lower level than the maximum permitted gluten content of 20 ppm. The products that have only the symbol of the struck-through wheatsheaf are not reliably gluten-free, because this symbol is not subject to any official monitoring. A product that provides the information “traces of” with a selection of certain allergens suggests that the manufacturer has a good allergen management system. If gluten is not listed here or in the ingredients list, the product is highly likely to be gluten-free. However, it isn’t certain. Coeliac patients are therefore recommended to use products that bear the phrase “gluten-free”. If in doubt, you should contact the manufacturer directly or refer to the lists of gluten-free foods published by the Coeliac Societies.

Wheat and spelt are the same as far as treating coeliac disease is concerned – they have nearly the same gluten content. If somebody cannot tolerate wheat, but they can tolerate spelt, then they are suffering neither from coeliac disease nor a wheat allergy. Instead, they are probably experiencing intolerance of other substances in wheat.

I’ve noticed that people who suspect they have an intolerance do not have a consistently gluten-free diet, which would be required if they had been diagnosed with coeliac disease, but neither is their diet varied enough. I often find that coeliac sufferers initially stick very strictly to a gluten-free diet, but after four years they become lax. Only when they then suffer severe problems do they come in for a consultation. “A 3-phase nutritional therapy that begins immediately after first diagnosis and supplementary nutritional advice when problems and/or increased transglutaminase levels appear, can considerably improve compliance in the patient.“ [Körner U, Schareina A: Nahrungsmittelallergien und -unverträglichkeiten, in preparation (Haug 2015)] Corresponding recommendations for monitoring check-ups in patients with coeliac disease have also been included in the current guidelines (3.11. Monitoring during the diet).

Yes, there are a lot of conferences taking place in medical and related fields at the moment and we’ve noticed that we have considerably more knowledgeable audiences in front of us now than we did two years ago. Increasingly, it’s not just the highly specialised gastroenterologists who are interested in this and that’s a good thing, because in the end it’s the family doctors we have to reach. They’re the ones who see the sufferer or potential coeliac patient first. But monitoring the diagnosis rate is unfortunately difficult: fewer screenings are undertaken in Germany than in other European countries. That’s why we can’t properly track how diagnosis rates are developing.

As coeliac disease is a genetically inherited condition, some are likely to be among a sufferer’s immediate relatives. We think there are many individuals with a sub-clinical degree of coeliac disease, i.e. without having visible symptoms. There may also be many patients with Irritable Bowel Syndrome who would benefit from a gluten-free diet.

Genetic testing is interesting in patients who have suspected coeliac disease. The guidelines recommend, for example, testing immediate relatives of a coeliac sufferer. But unfortunately coeliac disease isn’t monogenetic. It is thought that around 100 genes influence the presence of coeliac disease. At the moment, we know about 55 of these and we have seen that HLA-DQ2 and HLA-DQ8 are present in all coeliac sufferers. So we can assume that these two genes are a good indication of coeliac disease. However, they are also present in approximately 30 percent of the normal population. Therefore, a negative genetic test means that coeliac disease is extremely unlikely. However, if the test is positive, this can indicate coeliac disease, but it is not a definite result. So the test is only suitable for excluding a coeliac diagnosis.

There are no official regulations for the reports, but they should be clearly marked in both the medical and the histological findings. Sometimes it’s in the main text and sometimes it’s identified under the point concerning specimen material, e.g. as “Sample extraction duodenum (6x)”. In case of doubt, the histological finding is most clearly linked to the biopsies and has more detailed information.

We recommend a period of two months. That’s difficult to maintain for some patients, and in the worst case scenario that period has to be shortened. But you should still aim for two months to be sure of revealing all potential coeliac sufferers.