How is the diagnosis made?
1. Appropriate blood work has over 95% accuracy.
2. Small intestinal biopsy is typically advised in order to confirm diagnosis. This can be useful if future health problems ever develop as a comparison.
3. Capsule endoscopy is typically not the advised confirmatory test. It may be used in instances where a biopsy is not feasible.
4. Diagnosis must be made while the patient is consuming gluten. A gluten challenge typically requires 2-6 weeks of consuming at least 3 g of gluten per day.
Gluten-free diet
1. It is a process. Give yourself some time to learn.
2. Make lists and keep track of what you already eat that is gluten-free.
3. Food label reading is essential. Wheat, gluten, barley, rye need to be avoided. You can have oats as long as they are gluten-free.
4. If dairy products do not bother you, you can eat them. Some people with celiac have problems with dairy but this tends to dissipate over time. As the intestine heals on the gluten free diet the dairy intolerance may resolve.
5. Substitute gluten-free foods tend to be high in starch and can be constipating. Make sure you are getting 2-3 servings of fruit on a daily basis. I recommend that most patients eat kiwi fruit every day. Stone fruits such as plums, nectarines, peaches, pears are also good.
6. When eating out, it is best to say “allergy not preference”. If eating fried foods you need to clarify that the Fryer is gluten-free.
7. If you clean your countertops cutting boards and kitchen equipment well you do not need separate cooking tools or utensils. I would recommend having a separate toaster.
8. Local or online dietitian for resources.
Considerations for family members:
1. First-degree relatives have a 10-20% risk of also having celiac disease. This means there is a 90% chance they will never have celiac. This is different than the general population where the risk is 1 out of 133 people.
2. Any family member who is a first-degree relative with unexplained digestive health issues needs to alert to their primary care provider of their family history and seek testing.
3. HLA-DQ2 and DQ8 are genetic tests. These can rule out celiac disease but it does not rule in celiac disease. A positive HLA type means that it is possible for the patient to develop celiac disease. A negative HLA type means the patient cannot have celiac disease.
Long-term monitoring
1. Most patients see the gastroenterologist every 1 to 2 years to monitor for symptoms as well as some lab tests.
2. If other health issues arise it is important to differentiate if it relates to the celiac or potentially just something else. Just because the patient has celiac disease does not mean that they cannot develop other health issues.
3. There will fully be some treatments available in the upcoming years.
4. Some patients will elect to participate in research studies on new drugs. Regular GI follow-up ensures access to these opportunities if someone likes.
Miscellaneous
1.https://glutendetect.us/. Test strips to check for exposure. I do not generally advise these unless there is a question about a restaurant or symptoms.
2. “NIMA” device. Checks food for gluten. Usually only consider when patient is having problems.
Sources
https://www.uchicagomedicine.org/conditions-services/gastroenterology/celiac-disease