Hello, can anyone help me understand the attached results? They are for my 6yr old daughter.

Attached Thumbnails

 

Welcome EmmasMom2.

one is positive, and that is all you need. though they only performed 2 out of all the tests that they should have.

--is the most specific (though the least sensitive) for frank celiac (the anti-gliadin tests, which I don't see here, are more sensitive but somewhat less specific and may be associated more highly with non-celiac gluten sensitivity).

The IgA anti-glutaminase test is also the one most closely correlated with villous damage of the small intestine--it is likely that if there was an endoscopy, there would be evidence of flattened villi.

In any case, she needs a gluten free diet. This will mean high vigilance, as gluten sneaks into many things as a filler or binder; it's doesn't just mean giving up bread products. And all first degree relatives should be tested for celiac as well.

So you think she should have an endoscopy done? I was thinking she was gluten sensitive but not have celiac. Would you agree?
We are going to a GI Specialist tomorrow, what questions should I have him answer and/or should I request more tests?
Thank you so much for your response!

--it's likely she has celiac and some degree of villous damage.

There's probably no need for an endoscopy given the test result, unless someone wants to document to the "gold standard". The problem with many GI people who do endoscopies to take villous samples is that the villous damage is often patchy, especially early in the disease course, and many don't take enough samples or take them from the right areas (far into the small intestine, not just in the duodenum).

She should be on a gluten-free diet. And I'm betting there would be at least one more positive test result among the first degree relatives--maybe more.

When her doctor's office called about the results they told me the doctor wants to redo the test in a month because it came back inconclusive. I don't understand the need to wait a month. We have an appointment with a GI specialist today so hopefully they will see what you do! Even if they don't, I will start her on a gluten free diet and see if it helps her. I just want her to feel better! Thank you for your responses I greatly appreciate it.

Endoscopy is an invasive procedure with risks. Dirty equipment in about 30% of uses! You can Google that for more info.

There is risk of damage to the throat and esophagus too.

So compared to the gluten free diet...which does not have these risks, I'd go the safe way for now.

We had a poster here who had repeated upper endoscopies and ended up with permanent nerve damage in his back.
His story is long, complex, but it seems to always come back for me to his diagnostic events. (my opinion). I did alot of searching for him, and if you read his other threads, the oldest ones, you'll find some links there I shared with him.
http://neurotalk.psychcentral.com/sh...424#post815424

Endoscopies are big money makers for doctors. Since there is really no drug therapy to get from doctors in the event of having a upper positive endoscopy for celiac (and there are false negatives too), and there is only the diet to follow, then you can do the diet anyway, and save your child from the invasive procedure. You can always have it done later if need be.

Thank you for this information! I knew what the test included but never thought about the damage it could cause... Thinking more about her current pain.
I will read up on his posts and get her on a gluten free diet.

Thank you!

EmmasMom2, Listen to Glenntaj! Your daughter had a "moderate to strong positive" reaction to a very specific CD test.

What doctor called to say to retest in one month? A pediatrician? She does not need to have a redo of the test. That's silly, not to mention a waste of your time and money.

This is only my opinion, but I wouldn't put my daughter through an endoscopy at 6 years of age. Nor would I allow her to suffer for another month when it's clear she has celiac disease.

I've had celiac disease for 10 years now. I had a positive Reticulin antibody, which they don't do anymore because the biopsies weren't revealing enough! Gluten was making me very ill and I quit eating it immediately.

Your daughter needs to be able to absorb vitamins and nutrients! Because of the possible damage to the small intestines, she might not be getting what she needs. Has she been tested for any vitamin deficiencies, such as B12 and D or other deficiencies such as calcium, albumin, iron, etc?

These tests are rarely false positive. And her IgA is in the normal range as well (meaning a result would not be falsely high or low).

Doctors aren't perfect. And it's your right to question what they tell you. I can't imagine a savvy gastroenterologist saying that another test or a biopsy was necessary. I think it would be useful to consult with a good one, just so that you can have an intelligent conversation about celiac disease. It's not necessary, however, unless you want to do it.

Ditto on what Glenntaj said about other family members. Chances are high that you or her father might get CD at some point (have you been tested?), too.

There are other issues to consider, such as school lunches and cross contamination and so many other things that these guys on this forum have covered through the years.

I'm usually on the MG (myasthenia gravis) forum, but I check over here from time to time. I answered your post because I get pretty tired of doctors not respecting test results, especially when a child is suffering!


Annie