Diagnosis of ceeliac disease
What does a coeliac disease diagnosis mean?
Receiving a coeliac disease diagnosis and the right treatment in the form of a gluten-free diet usually means an improved quality of life for the person affected. This also applies to those who did not experience symptoms before the diagnosis. The inflammation in the small intestine subsides, the intestinal villi recover, and the person can once again absorb nutrients from food properly. As a result, the risks associated with untreated coeliac disease also gradually decrease. The only treatment available today is to follow a strict gluten-free diet, and it is a lifelong treatment that must be followed carefully. Therefore, it is important that any diagnosis comes from a medical evaluation that ensures it really is coeliac disease. A prerequisite for making the diagnosis is to continue eating gluten until the evaluation is complete.
Testing for coeliac disease through a blood test
When a person with coeliac disease eats gluten, the immune system reacts incorrectly. The lining of the small intestine becomes inflamed, the intestinal villi are damaged, and coeliac-specific antibodies are produced. In the evaluation for coeliac disease, a blood test is first taken to look for these antibodies. If the blood test is positive, doctors often proceed to take tissue samples (biopsies) from the small intestine. The appearance of the villi and signs of inflammation are examined. By weighing symptoms together with the test results, the diagnosis of coeliac disease is confirmed or ruled out. As a complement, a negative genetic test can rule out coeliac disease. However, a positive genetic test only shows that the person has a certain risk of coeliac disease—most people never develop it. The National Care Program for Coeliac Disease describes how the entire evaluation should be carried out.
Follow-up for coeliac disease.
Follow-up should be carried out in healthcare 6–12 months after the diagnosis and the start of a gluten-free diet, including blood tests. When coeliac disease is diagnosed, a referral should also be sent to a dietitian for an initial visit within 2–3 weeks. Since the only treatment for coeliac disease today is a lifelong gluten-free diet, the dietitian’s role in coeliac disease care is indispensable. Regular support from the dietitian can help ensure that the diet is strictly gluten-free without unnecessary restrictions. The dietitian also considers individual factors that may mean the diet needs to be further adapted. For growing children, regular visits to a dietitian are very valuable. For dietary treatment, there are currently national
A medical evaluation for coeliac disease is important
A coeliac disease evaluation is important.
To be able to follow a strict gluten-free diet for life, it is essential to know whether you have coeliac disease. If you suspect that you cannot tolerate gluten, you should therefore contact your doctor or health center to have a blood test and undergo an evaluation for coeliac disease. It is important not to test on your own by switching to a gluten-free diet. The diagnosis of coeliac disease must be made within the healthcare system—and the evaluation must be done while you are still eating gluten. If you have already switched to a gluten-free diet, it can unfortunately become difficult or even impossible to confirm or rule out coeliac disease. This is because a gluten-free diet is the treatment for coeliac disease, and the intestine then gradually heals and blood values normalize. As a result, both blood tests and an intestinal biopsy may look normal—even if you have coeliac disease—which complicates or prevents the evaluation.
You cannot simply remove gluten from the diet; other substances are removed at the same time. Therefore, you cannot test yourself to find out whether you tolerate gluten or not. There may be reasons other than coeliac disease why someone feels better on a gluten-free diet. Finding the right cause is important in order to get the right treatment. That is why it is unfortunate to try to test it on your own.
The coeliac disease brochure.
If you work in healthcare, you can order our brochure Coeliac Disease – Which of Your Patients Have Coeliac Disease? (in Swedish), which we have published in collaboration with Professor and Senior Consultant Jonas F. Ludvigsson to increase knowledge and awareness of coeliac disease and its symptoms and diagnosis.