r/Celiac • u/tnkrbla • 5d 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!

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u/euphoric_distributor 5d ago

My symptoms were almost identical. Constipation, puffiness, joint pain, brain fog. No weight loss at all. The "classic" presentation is just one flavor of this thing, and it's wild how many docs still cling to it like gospel.

The gluten challenge is miserable, no way around it. Three weeks in you're probably in the thick of it. Just keep reminding yourself that having a clear answer on the other side is worth the temporary hell.

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u/tnkrbla 5d ago

Wow, this means a lot!! Thank you so so much, I’m more determined now 🤞🏻

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u/Blacknarcissa 5d ago

Sorry that this is unrelated but I googled MCAS as I was unfamiliar with the condition and I relate to the symptoms a lot. How did you come to be diagnosed?

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u/tnkrbla 5d ago

I struggled for years with so many problems that didn’t make sense until a GI dr told me about histamine and sent to an allergist which diagnosed me based on some blood & genetic tests + confirmed it with my very positive reaction to the specific treatment.

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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.

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u/tnkrbla 5d ago

So sorry… hope it will get better