It is important that patients with celiac disease be followed appropriately. After diagnosis, patients should be seen by their diagnosing physician or celiac disease expert at three to six months. The reason for this is to identify and correct nutritional disturbances, asses for persistent symptoms and identify their cause so that appropriate treatment may be initiated. The timing of these appointments will depend upon how sick the patients are. Early follow up appointments are also important to ensure knowledge of an adherence to a gluten-free diet. After these early follow up appointments, patients should be seen at the least annually for physical examination and follow up testing.
These regular annual follow up visits should include regular physical examination, blood testing for nutritional status and assessment of associated conditions as well as properly timed repeat biopsies and bone mineral density determinations.
Physical examination should include determination of BMI, examinations for enlarged lymph nodes as well as for occult blood in the stool.
Patients are advised to use a regular gluten-free multivitamin as well as calcium supplementation tailored to their needs. The multivitamin is mainly prescribed because studies have shown that patients may be vitamin B deficient on an extended period on a gluten-free diet.
We advocate annual review of the gluten-free diet with an experienced nutritionist. The reason for this is that it is becoming increasingly difficult to maintain a regular gluten-free diet. In addition, it is important that a gluten-free diet include both nutritious gluten-free grains as well as contain a variety of interesting and diverse foods.
Routine bloods including hematology and chemistry tests should be performed. In addition, we monitor iron status (serum ferritin), thyroid function and assess vitamin B status (vitamin B12, folate, B6 and homocystine levels). Copper and zinc levels are also measured.
All serum antibodies should normalize on a gluten-free diet. The timing of them becoming normal varies. Generally they should be normal by twelve months, though this time period varies. Certainly the presence of positive antibody tests at 18 months to two years would indicate lack of adherence to a strict gluten-free diet. When elevated antibodies are detected in individuals in whom they had already normalized, strict overview of the diet needs to be undertaken. It is known that minor gluten ingestion will not elevate the antibodies so the finding of elevated antibodies means that there is significant ongoing gluten ingestion (non-adherance to the diet). This may be due to either intentional gluten ingestion or inadvertent ingestion.
The best blood test to follow has not been determined. We measure both anti-gliadin antibodies and tissue transglutaminase antibodies. There is evidence that the new generation antibodies to deamidated gliadin peptides (anti-DGP) are the best test to determine dietary adherence.
Bone mineral density estimation should be performed at intervals. Patients receive a bone density test at diagnosis and if it is low, the first follow up should be at one year following calcium and vitamin D repletion.
Follow Up Endoscopy & Biopsy
We recommend a follow up biopsy after several years on the gluten-free diet. Patients who are not doing well on a gluten-free diet often get frequent biopsies to assess further presence of refractory celiac disease. The need and timing of a follow up biopsy in patients who are doing well is somewhat controversial. There is little point to a biopsy being performed while antibodies are still elevated because this per se requires stricter attention to the diet. We would recommend repeat biopsy at three to five years after commencement of the diet. At this stage, there should be marked improvement and the presence of persistent villous atrophy and intraepithelial lymphocytosis has great significance. If present, this would indicate either lack of adherence to the diet or the development of refractory celiac disease.