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Benefit of certain diagnosis

gbm75
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gbm75 Newbie
gbm75
Posted

I am a teacher and have been following a gluten-free diet strictly as I have a 30-minute commute to work and am experiencing many digestive issues which I cannot have on the highway! I have a sister and a brother with Type 1 Diabetes. My sister has just been diagnosed (in May) as having (being?) celiac. 

From what I am reading to get an accurate test and diagnosis I would need to eat gluten 2x/day for 6-8 weeks before being tested and then having a biopsy. This sounds pretty miserable. While I would love to eat a cinnamon roll again, it would chain me to my bathroom all summer. 

I'm wondering if I should try to get tested or just go along how I am now, acting as if I have already been diagnosed. Are there any benefits to having an actual diagnosis? I am currently living in the U.S.

How long does it take for your villi to heal themselves? 

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Scott Adams Grand Master
Scott Adams
Posted

I think you need to determine why a formal diagnosis would be important for you--would this be the only reason for you to stay 100% gluten-free, for example? It seems that you've already determined that you have a sensitivity to gluten--approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS, and since you've not been screened for celiac disease it can't be ruled out.

 

Getting a formal diagnosis can have drawbacks--for example you may pay higher private health and/or life insurance premiums. 

trents Grand Master
trents
Posted

You could also get genetically tested for having any of the genes that connect to celiac disease. 40% of the general population  have one or both (there may have been another discovered more recently so there may be more than two) but only about 1% of the population actually has active celiac disease. It also takes a stress event of some kind, e.g. a viral infection, to activate the genetic potential. But if you don't have any of the genes you can rule celiac disease out and presume NCGS instead. But at the end of the day, the antidote is the same for both, namely, total avoidance of gluten for life. Having said all that, it is common for celiacs to develop other food intolerances. The most common are dairy, oats (even gluten free oat, eggs, and corn. But it could be almost any food protein.

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