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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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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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