--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

I'm attaching other blood work results that she had done.

It was her ped doctor who said she wanted to retest because she felt it was inconclusive, some positive and some results were negative.

I will not put her through an endoscopy and hopefully the pediatric gi specialist and I can have a conversation about celiac and where to go from here.... obviously a gluten free diet but what else?

I have not been tested and neither has her dad but I will get tested.

Thank you AnnieB3

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Does that say "Immunoglobulin B?" The one that is 303? It's a bit hard to read. Depending upon what that is, you might need to see an immunologist. There aren't many pediatric immunologists, so you might need to see a "regular" one. What vaccines has she had? It might be a reflection of that.

I thought it was the pediatrician. They aren't gastroenterologists, and have only limited experience with celiac disease. And she isn't an allergist either! A person doesn't have to have allergies and celiac disease at the same time. And celiac disease is not an allergy, but an autoimmune response (a lot of people have that misconception, even doctors!).

You should be pretty happy that those allergy tests were negative. I can't believe they did so many.

You should all have your B12 tested, too! Methylcobalamin (I like Jarrow Formula's brand) is the better form of B12, in case you are deficient. I take it daily (I had a severe deficiency diagnosed in 1999).

There is gluten in a lot of things, not only food. Some toothpastes have it. The glue on envelopes, too. You will probably have to do a lot of label reading! Even some hair coloring has gluten in it. Shampoo too!

Basic information on CD:

http://celiac.org/celiac-disease/wha...eliac-disease/

There are good tips on going GF on this site:

http://www.celiac.com

You should know that there is not a definitive answer on whether oats are okay to eat or not. I listen to my stomach, not studies, and it told me to NOT eat oats! I got sick every time I tried it and I never got sick from oats before getting CD.

There are a lot of GF sources out there. www.iherb.com has GF foods, as do a lot of stores. If you can have as many whole foods as possible, that helps.

One of the best flours I've found is "Better Batter." It's an all-purpose flour for baking and cooking.

There are great tips on this site as well.

What else do you need to know? It can be overwhelming, but just take it a step at a time. She can even have cross contamination if you don't use separate cooking and baking pans, etc.

I really think your daughter needs to go GF immediately. Don't wait for a conversation. She is having damage done to her small intestines and it takes a while for that to be repaired.

I hope you guys can get used to this new GF world! It's not that bad, really. And kids are so great at adapting!


Annie