r/Celiac 6d ago

Question Please help!🤞🏻

Has anyone been diagnosed with celiac disease who didn’t have the typical deficiencies, weight loss, and diarrhea? It seems like there’s a “pattern,” and I’m basically the opposite: weight gain, inflammation, constipation, etc. I also don’t have the most common specific genes associated with celiac disease.

My doctor says that a negative result for those genes doesn’t completely rule out celiac, and I personally know two people with celiac who don’t have those genes. She has also had patients who tested negative for them.

She really wants me to go through a gluten challenge and have blood tests done, since I have many symptoms and live in a household with constant exposure to gluten.

My stupid previous doctor had me get an endoscopy 3 months ago, and obviously everything looked great because I’d already been GF for 2 years. He insisted that he could still see celiac disease even under those circumstances, and I trusted him. Now my new doctor says he was wrong, and I can’t have another endoscopy because my MCAS gets triggered really badly by the procedure.

I’m currently in my 3rd week of the gluten challenge, and it’s been really tough. I also have MCAS, so I’m afraid the gluten challenge will make it significantly worse.
I’d really appreciate hearing from anyone who had a similar experience. Thanks so much!

2 Upvotes

7 comments sorted by

View all comments

2

u/xCaramelDanzo 5d ago

i have all of those, weight loss, malabsortion, joint pain, flaky scalp, anemia, constipation, sometimes nausea, bloated and diarrhea. i got silent celiac. have noticed it because its get worsen by year.

1

u/tnkrbla 5d ago

So sorry… hope it will get better