Coeliac disease is a particular form of allergy to the protein of wheat, rye and barley (gluten) in which the lining of the small intestine is "flattened". This causes malabsorption of all foods, which in severe cases results in a wasting condition. It should be diagnosed in childhood but increasingly I see adults who have been less severely affected.
I often have patients tell me that they do not have coeliac disease because blood antibody tests or biopsy tests were negative. However this does not necessarily mean it is safe for them to eat wheat and other gluten grains. There are other antigens in wheat, furthermore wheat can cause problems for other reasons such as being rich in lectins as well as being high in starch with the potential for fermentation in the gut.
In all cases of wheat intolerance, for any reason, one is at risk of malabsorption with the earliest problem being vitamin B12 deficiency.
Although the classical symptom of coeliac disease is diarrhoea, milder forms can present with almost any gut symptom including constipation. Fatigue is also a common problem.
Coeliac disease sometimes presents with an intensely itching rash. It should blister but sometimes the blisters are scratched off before they appear. The rash is called dermatitis herpetiformis and improves on a gluten-free diet.
Diagnosis of coeliac disease by tests is fraught with problems! Many doctors will only diagnose coeliac disease when an intestinal biopsy (Crosby capsule - ouch!) demonstrates intestinal flattening. However that intestinal flattening will only be there if the patient is eating wheat at the time of the biopsy. The trouble is most patients have worked out that gluten is the problem, avoided it and cured themselves. They do not want to be made ill by eating wheat again.
Testing for Coeliac disease
It is possible to measure antibody levels to these grain proteins. There is more than one such protein and you need to ask for antibody levels not just to gluten but also gliadin and anti-endomysial antibodies.
If you have a positive diagnosis of coeliac disease, this entitles you to free prescriptions on the NHS for gluten free foods.
The main problem I see is when people get tested for coeliac disease, tests come back normal and then they are told that they do not have an allergy to wheat or other grains. This can be deeply misleading. Allergy to wheat and other grains is extremely common and it is only a minority that will test positive for coeliac disease.
Long term problems
Undiagnosed coeliac disease will cause malabsorption of foods. There may well be unusual deficiencies: I would do a B12 and folic acid level, ferritin (iron level) and possibly other trace minerals according to how healthy the patient was.
Undiagnosed coeliac is also a risk factor for stomach lymphoma - a rare cancer.
- Do a gluten-free (wheat, rye, barley free) diet. There is very little gluten in oats and these are normally tolerated (but may not be).
- Be aware that gluten may not be your only allergy.
- Take nutritional supplements for life.
- If the symptoms do not settle down completely, investigate other possible diagnoses.
- Investigate for malabsorption.
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