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So Frustrated

DonnaMM

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DonnaMM Explorer
DonnaMM
Posted

decided to get a copy of my labs today and realized my doctor did not even order a full celiac panel on me! He said no way I have celiac cause negative biopsy (with blunted villi) even though I respond to the diet. All he ordered was IgA, IgG and IgM so not happy right now!

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sandsurfgirl Collaborator
sandsurfgirl
Posted

Time to fire the doctor. Blunted villi is NOT negative. Add him to the long list of docs who are stupid about celiac. You have celiac. Welcome to the club! It's an awesome group of people and you'll feel so much better soon.

kareng Grand Master
kareng
Posted

Have you seen the actual pathology report of the biopsies? If not, get a copy. It could be enlightening.

Christelle Newbie
Christelle
Posted

I believe (after reading for many hours about Coeliacs) that bluntened villi is a sure sign that they have definately been affected by gluten intolerance. They should have referred to this as an early diagnosis. Not negative at all but timely as the damage hasn't yet flattened them totally. That's wonderful news. I can't wait to have a colonoscopy to hopefully show that I have this disease as well. The sooner you find out the sooner you can start getting better. Take that as good news Donna. Now you know where to go from here. :)

Christelle Newbie
Christelle
Posted

This article that I have been reading this morning may shed some light on any doubts you may have Donna. I am finding it fascinating. https://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html :)

sandsurfgirl Collaborator
sandsurfgirl
Posted

The damage in your intestines is not consistent all the way along the length of them either. They only take tiny little samples in what... four places? They can miss a damaged part or just get part that isn't as damaged as another spot they didn't sample.

For them call blunted villi negative is just plain wrong and it makes me question anything this doctor says from here on out.

TTNOGluten Explorer
TTNOGluten
Posted

Tissue tranglutaminase IgA/ IgG level is probably the most common screening lab consistently used, the IgA portion of which is more reliable, the IgG level can come into play if you have an IgA defiency, so typically measuring a coexisting Serum Iga along with the TTg IgA/Igg can help in missing those who have serum Iga that is low. Also may check am endomysial antibody, it is a bit more difficult to interpret but is very sensitive and specific if positive. Deamidated Gliadin is another lab frequently used, growing in use to some extent and very specific. If you are uncertain, you may want to have the HLA markers for celiac checked as well, although many people in there general public carry these markers without celiac disease, if they are negative it is very likley that you do not have it. Biopsy remains the gold standard for diagnosis of the duodenum by endoscopy. Hopefully this helps, I know it is a bit confusing

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