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I have Celiac Desease

Autoimmune Diseases | Last Active: Jun 7 11:24am | Replies (35)

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@kayabbott

It's not only long-term care. Some hospitals won't provide GF meals unless someone has a diagnosis of celiac. I have celiac, but no formal diagnosis because the GI 14 years ago thought because I wasn't anemic that I had diverticulosis (still none), so only GF for a week and one biopsy sample of my small intestine (the celiac was new, triggered by H1N1, so minimal GI damage). I have the HLA DQ8 0302 haplotype, but that just means that I am at risk for it; the genetic test doesn't confirm celiac because ~30-40% of people have HLA DQ2 or DQ8. There is no way that I'm making myself sick for weeks just to confirm something that I have. I have celiac listed on my medical charts, but some doctors won't accept that without endoscopy and bloodwork. It is easier convincing them now that I have collagenous colitis (8 years). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10039793/#:~:text=Background,based%20cohort%20studies%20are%20rare.

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Replies to "It's not only long-term care. Some hospitals won't provide GF meals unless someone has a diagnosis..."

Oh, I am so sorry... you have the two main problems that we face in modern medicine:
1. Getting the diagnosis.
2. Needing more research so the modern medicine will get the diagnosis.
It is a dead end street and so frustrating!!
I agree, making yourself sick, so the paperwork matches reality, is NOT an option!
If you ever, and hopefully not, you land in hospital, there are some companies that deliver GF meals...I have used that in days gone by.
Cheers to you for doing what you wisely know is necessary!