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Frustration With Gastro Doc

mamasaidso

By mamasaidso
in Doctors

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mamasaidso Apprentice
mamasaidso
Posted

My 21 year old daughter and I have different gastro docs. She really likes hers, but I am having some doubts. She had first endoscopy last October which showed totally flat villa and had negative celiac panel. He was not convinced she had celiac even after I had positive bloodwork and positive endoscopy done this spring. She just had second endoscopy with more biopsies in that area and also to check for complications after her gallbladder surgery in February this year. He said results of this endoscopy showed blunt villi in area of stomach not associated with celiac. I'm thinking, Huh? Her B-12 is in low 300's and she asked for shot, which he didn't do. So now we are off to Labcorp today for more bloodwork and MRI for her symptoms. She knows I feel better with the diet and B-12 shots. He is being cautious because of other symptoms and not pushing the gluten-free diet yet. She doesn't want to switch, but I am really frustrated.

How can flat villi not be celiac?

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aikiducky Apprentice
aikiducky
Posted

That's completely the wrong way around! Blood tests can have false negatives, but is she had totally flat villi then I don't know what else it could be but celiac. The blood test isn't usually used to confirm the biopsy, the biopsy is considered the more important one.

Pauliina

melmak5 Contributor
melmak5
Posted

I would request a copy of all her labs and tests and find a new doctor. In the mean time, if she is open to it, have her try going gluten-free while you are searching for a new GI.

If that is not an option, perhaps you could try to educate this current GI on what celiac disease IS. There are a few New England Journal of Medicine articles that not only explain what villi damage is, they have pictures. (So if the doc feels the need to play intestinal bingo with the journal article and your daughter's villi slides, s/he can.)

In a nutshell, this sounds like Celiac Disease and going gluten free is not going to hurt your daughter. She has all the necessary tests, labs and blood work... so knocking out gluten will most likely help her!

(That being said, its really hard to hear that one has celiac disease, so your daughter might find it hard to swallow, especially from her mom. So people need to hear it from a "medical professional" which is why I suggested finding another GI to help validate this process.)

Good luck!

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      Would you also agree that being so close to the IgA deficient cut off is significant? We just have been told he’s not as just over into the not deficient category…   thank you so much for all the help so far, it’s been so helpful!
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