My daughter's diagnosis--so confused

[Marlena0312]

Hi, everyone! I'm new here. I was diagnosed with celiac in May of this year. It was kind of a surprise--my primary care physician added the bloodwork into a panel as an afterthought when we were trying to figure out what was wrong with me. When it came back positive, we were both surprised. Then, of course, the biopsy confirmed. In the meantime, I've been seeing my 6 year old daughter have stomach issues off and on since she was born. A lot of the same stomach issues that I have associated with my celiac. 2 years ago we had the initial bloodwork done and it came back negative. We just retested in October (a year later) and the celiac panel was positive this time. The GI told me that, based on the bloodwork and symptoms, she was pretty positive that my daughter had celiac and the biopsy would just confirm. But the biopsy came out negative! She said she was tentatively diagnosing it as non-celiac gluten intolerance and said that we should definitely put her on a gluten free diet. She suggested we do another biopsy in a year. Obviously, if the gluten free diet appeared to have no positive effect on her symptoms then we would come back and begin looking for other potential GI issues. Has anyone else experienced something like this? Could they have missed something on the biopsy? I know from my GI that my intestinal damage was patchy. Some areas were terrible and others were almost fine. Maybe they just missed it? Just wanted to see thoughts from people with more experience than me. I'm already new to the whole celiac thing for myself, let alone my daughter. We've obviously gone gluten free with Ali (my daughter) but it's only been a few days since I got the results from the GI. We haven't had enough time to see results just yet.

 

Edited to add: An additional note about her igA. 2 years ago when we tested her igA was normal. I don't remember the exact number (I've requested that her pediatrician send me a copy of the lab results) but I know it was normal. This year when we tested, her igA had dropped to "almost nothing." It's below a 5. According to the GI, that was the thing that made her thing celiac--apparently celiacs frequently have low igA.

[cyclinglady]

Welcome!  How fortunate that your daughter's celiac was caught early.  I am not a doctor, but I would bet that the GI did not take enough tissue samples or he did not take them at the recommended locations.  ?

Make sure that she is consuming gluten prior to that next biopsy (4 weeks daily) if you decide to go forward with that procedure.  It is such a bummer that we have to make ourselves sick in order to get a diagnosis.  

Her IGA result is strange.  I always thought that once you were IGa deficient (or not) you would always test that way.  I will have to look that up in my spare time (not!) ?

My daughter has tested negative so far.  No major symptoms and she is not anemic (my main symptom at Dx time).  Good thing you kept up on testing.  

Kids tend to heal fast, but be patient.  It will take time!  

 

 

[nvsmom]

Welcome to the board

On 11/30/2015, 9:54:07, Marlena0312 said:

Hi, everyone! I'm new here. I was diagnosed with celiac in May of this year. It was kind of a surprise--my primary care physician added the bloodwork into a panel as an afterthought when we were trying to figure out what was wrong with me. When it came back positive, we were both surprised. Then, of course, the biopsy confirmed. In the meantime, I've been seeing my 6 year old daughter have stomach issues off and on since she was born. A lot of the same stomach issues that I have associated with my celiac. 2 years ago we had the initial bloodwork done and it came back negative. We just retested in October (a year later) and the celiac panel was positive this time. The GI told me that, based on the bloodwork and symptoms, she was pretty positive that my daughter had celiac and the biopsy would just confirm. But the biopsy came out negative! She said she was tentatively diagnosing it as non-celiac gluten intolerance and said that we should definitely put her on a gluten free diet. She suggested we do another biopsy in a year. Obviously, if the gluten free diet appeared to have no positive effect on her symptoms then we would come back and begin looking for other potential GI issues. Has anyone else experienced something like this? Could they have missed something on the biopsy? I know from my GI that my intestinal damage was patchy. Some areas were terrible and others were almost fine. Maybe they just missed it? Just wanted to see thoughts from people with more experience than me. I'm already new to the whole celiac thing for myself, let alone my daughter. We've obviously gone gluten free with Ali (my daughter) but it's only been a few days since I got the results from the GI. We haven't had enough time to see results just yet.

 

Edited to add: An additional note about her igA. 2 years ago when we tested her igA was normal. I don't remember the exact number (I've requested that her pediatrician send me a copy of the lab results) but I know it was normal. This year when we tested, her igA had dropped to "almost nothing." It's below a 5. According to the GI, that was the thing that made her thing celiac--apparently celiacs frequently have low igA.

Do you know what test your daughter had positive? Low IgA is not a test for celiac but it is much more common in celiacs than others.  I think celiacs are low in IgA 1/20 and everyone else is something along the lines of 1 in 700.

A low IgA will invalidate the tissue transglutaminse IgA, deaminated Gliadin IgA, and enodomysial antibodies IgA, so the doctor would have instead had to run the tTG IgG, DGP IgG and EMA IgG. Was one of those positive? If those tests weren't done, don't go gluten-free yet, but get them done first.

One positive test, especially with symptoms and a celiac mother, should trump and negative test. The blood tests can miss up to 1 in 4 celiacs and the biopsy isn't much better at 1 in 5 getting a false negative. That happens with patchy damage, not wide sampling or less than 6 samples being taken... or just bad luck. 

I don't understand why the doctor wants to re-biospy in a year after living gluten-free.  She would be healed by then, and showed no damage to begin with so they should be the same.  Seems odd.

If you can't get the IgG tests run, and you suspect celiac disease, perhaps make her gluten-free anyways.  My kids were all negative but two of them had symptoms so we are now all gluten-free, and their health improved. They could be celiacs, or it could be a coincidence (doubt it) but either way they are healthier.

Best wishes.