I came across this list on PubMed the other day, and although I posted it on Facebook, I thought it might be worth sharing on here for everyone else. It comes from an abstract titled “Celiac Disease: Ten Things that Every Gastroenterologist Should Know.” It was written by Drs. A. Oxentenko and J. Murray (from the Mayo Clinic) and published online in the journal “Clinical Gastroenterology and Hepatology” on July 19, 2014. I usually don’t like “Top 10” lists, but it has some good information for both gastroenterologists and their patients. Just for clarification, the quoted statements come directly from the publication and the words in italics are mine.
- “The IgA TTG is the single best serologic test to use for the detection of celiac disease (CD).” Most celiac antibody panels (blood tests) include the TTG IgA. However, it is possible for a person to have a negative TTG IgA and still have celiac disease. False negatives can occur in small children, people with a condition called selective IgA deficiency, and in people who are tested after already starting on the gluten free diet.
- “Celiac disease can be recognized endoscopically, and water immersion enhances villi detection, although a normal endoscopic appearance does not preclude the diagnosis.” If an endoscopy is done to look for celiac disease, biopsies also need to be done. The damage from celiac disease is often microscopic. I have met people whose GI doctors did endoscopies and told them they did not have celiac without doing any biopsies!
- “It is recommended that four biopsies be taken from the second part of the duodenum, and two bulb biopsies taken at the 9 and 12-o’clock positions to maximize the sensitivity for histologic confirmation of CD.” The intestinal damage from celiac disease can be patchy, so if not enough biopsies are done, it can be missed.
- “Consider serologic testing of first-degree relatives, patients with type 1 diabetes, Down’s, Turner’s and William’s syndromes, as well as those with premature osteoporosis, iron deficiency, abnormal liver biochemistries and other manifestations of CD.” First degree relatives are parents, siblings, and children of those with celiac disease. Screening in high-risk people also needs to be repeated periodically, as celiac disease can develop at any time during one’s life.
- “Patients already on a prolonged gluten-free diet (GFD) should be tested for the presence of HLA DQ2 or DQ8, thereby avoiding the need for further evaluation of CD in non-allelic carriers.”This can be very helpful in people who go GF prior to being tested for celiac disease. If one does not carry the 2 main genes, the chances of having celiac disease are very low (between 1-2% of celiacs are DQ2 and DQ8 negative) and non-celiac gluten sensitivity is much more likely than celiac.
- “The basic treatment of CD is a strict, life-long GFD, enabled by an expert dietitian.” Don’t think I need to explain this one!
- “Newly-diagnosed adults with CD should be assessed for micronutrient deficiencies (iron, B12, folate, zinc, copper), fat soluble vitamins deficiencies (vitamin D) and bone densitometry.” Osteopenia (low bone mineral density) is rather common. Vitamin and mineral levels should be assessed at follow-up appointments, as well, to make sure there has been improvement.
- “All patients diagnosed with CD should have clinical follow-up to ensure response and adherence to a GFD.” From what I have read, this should happen between 6 and 12 months after going on the gluten-free diet.
- “In those with persistent or relapsing symptoms, the robustness of the original diagnosis should be reviewed, gluten exposure sought, and a systematic evaluation for alternative and associated diseases.” I was given the opportunity to write about this problem, which is called nonresponsive celiac disease, in Gluten-Free Living magazine. You can find my article here. Although the most common cause of continued symptoms is accidental gluten exposure, In some cases people do not get better because they were misdiagnosed with celiac disease in the first place!
- “Evaluate those with refractory disease for malignant transformation.” People with refractory celiac disease are at risk for lymphoma. This is why it is important to get medical follow-up if you do not get better on the gluten-free diet.
Thanks for reading! I hope you are all having a nice summer and I really appreciate your comments, emails, questions, etc. Please keep them coming!