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Celiac Cause He Can't Find Any Other Explanation?

dopaminegirl

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dopaminegirl Apprentice
dopaminegirl
Posted

So, after a murderous 7 week gluten challenge, my bloodwork came back negative (DGP, TTG and EMA). My EGD showed increased epithelial lymphocytes, and other tests have ruled out all the other possible causes of IEL. Between my symptoms when I was eating gluten, my positive genetics, and the lackluster biopsy, my doc has decided that we should treat this like celiac disease. 

 

It's not the rock hard certain diagnosis that I was hoping for, but I was going to go gluten free anyway, and I'm not willing to eat any more gluten just to be more certain. 

 

So I guess that's that. 
Hopefully I can start feeling better soon. 

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nvsmom Community Regular
nvsmom
Posted

I hope you are feeling better soon too!

Celiacandme Apprentice
Celiacandme
Posted

I also hope you are feeling better soon!

squirmingitch Veteran
squirmingitch
Posted

Me three!

dopaminegirl Apprentice
dopaminegirl
Posted
  • Author

Thank you everyone.

Finally got to see the biopsy summary for myself. He took at least 6 in a duodenal sweep, and 6 from the bulb. It looks like the increased intraepithelial lympocytes (Marsh I) were fairly diffuse across both. I've asked how the IEL counts compare between this biopsy (post gluten challenge) and my first biopsy (6 months gluten free). Hopefully he'll get back to me soon. He's usually pretty patient with my obsessive need to know the details...

 

I'm so curious about my condition. I wonder if the stomach bug that triggered all my problems last year really was when my "celiac" started, and that the reason I don't have more definitive results are that I didn't give it time to progress to that point. The only way to find out would be to keep eating gluten, and that's a non-starter. 

For now, I'll consider myself one of the lucky ones: fast diagnosis, minimal damage, and I don't seem to be hypersensitive (so far).

 

Two weeks gluten free and I actually felt good enough to attempt exercise last night. It was amazing. I've also been more productive at work, and I've actually been accomplishing some of my chores at home, including taking back some of the cooking responsibilities from my husband. I'm avoiding onions like the plague: I redeveloped an intolerance for onions during my gluten challenge, but I'm hoping it goes away while I'm gluten free. Husband and I have been working on deglutening the kitchen, we've switched toothpastes, I'm working on talking to my pharmacist to make sure my meds are gluten free....

My stomach is behaving, my joints don't hurt, my headaches are decreasing...

 

There's a part of me that feels like a fraud, saying that I have celiac. But I'm seriously gluten-free, I'm not going to cheat, I'm not going to say "Oh, a little CC is okay, I'm not THAT celiac," so I don't think I'm adding to the problem that so many celiacs face (fad dieters). I'll advocate like my life depends on it (which it might). 

 

Anyway, thanks for all the guidance from this community. You guys are life savers that have made it so that I don't feel alone or silly or like a hypochondriac.

I only hope that I can return the favor.

 

I'm getting my PhD in Pharmacology, so if anybody needs medical language translated to something normal people can understand, I'm happy to help!   :)

nvsmom Community Regular
nvsmom
Posted

That biopsy sounds like something is up.  Marsh 1 can be a sign of early celiac disease so it is probably wise to go gluten-free as you are doing.  I hope you feel better soon!

dopaminegirl Apprentice
dopaminegirl
Posted
  • Author

For the curious,  I want to add that I had elevated liver enzymes (AST and ALT) back in October, when I was only recently gluten free. 

 

They tested for everything that could possibly cause elevated transaminases (fatty liver disease, hepatitis, Wilson's, Lupus) and found nothing.

The enzymes were back to normal in February after a couple months gluten free. 

I recently read a recommendation for doctors that patients with unexplained elevated transaminases should be tested for celiac. Apparently it's a relatively common manifestation. 

 

So there's that too. 

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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