Testing for celiac

[Bebee]

I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed?

Thank you!

Barb

[Scott Adams]

Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or endoscopy would be challenging, as it requires consuming gluten for several weeks to months, which could worsen your symptoms and disrupt your daily life.

Gene testing (HLA-DQ2 and HLA-DQ8) through a lab like EnteroLab could be a helpful first step. While these genes are present in nearly all celiac patients, having them doesn’t confirm celiac disease—it only indicates genetic susceptibility. If you don’t have these genes, celiac disease is highly unlikely, which could provide some peace of mind. However, if you do have the genes, it doesn’t confirm celiac disease but suggests further testing might be warranted if you’re willing to undergo a gluten challenge.

Another option is to discuss with your doctor whether a follow-up endoscopy or other non-invasive tests (like stool tests for gluten antibodies) could provide insights without requiring a gluten challenge. While a formal celiac diagnosis can be important for ensuring strict dietary adherence, access to gluten-free options in hospitals, and monitoring for complications, it’s also worth weighing the risks and benefits of reintroducing gluten. If you’re already strictly gluten-free and managing your symptoms well, the urgency of a formal diagnosis may depend on your personal health goals and concerns. Consulting a gastroenterologist familiar with celiac disease and Microscopic Colitis can help guide your decision.

[Bebee]

Thank you for your input!  I would really like to know if I have celiac disease because you need make sure you are not getting any cross contamination due to cancer concerns.  I guess I need to start with a knowledgeable Gastroenterologist.
Thank you again!

[Scott Adams]

In case you decide to go the route of a gluten challenge for a celiac disease blood test or biopsy:

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

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"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

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and this recent study recommends 4-6 slices of wheat bread per day: