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Baffled At Test Results, And No Diagnosis.

Southernserenity

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Southernserenity Newbie
Southernserenity
Posted

Hello everyone.

I have been dealing with food allergies for years, 4 to be exact, with DD9, and that is when I first came across the term celiac disease. I suspected she might have it, she saw a Gi Dr that looked at her and said nope it is allergies. It was left at that. Fast forward a few years, and new pediatrician. Diarrhea still exists, stomach pains, and she is small for her age.

Then DS4 has many similar symptoms so Dr tests their IGA levels, his is 97%, hers is 26%. Based on his high number he has a biopsy done last week. GI Dr called with results said there is swelling and villi changes in duodendum, yet lower intestine looks okay. Dr says he is hesitant to diagnose celiac because he is not 100%. So he is ordering another blood test HLA-DQ to further assist him in diagnosing. We will go from there. Also, based on those results if they are positive he wants to have DD undergo a biopsy.

In the meantime DS is to avoid wheat, which he tested mildly allergic to anyhow. I am baffled at all this. Based on his 97% IGA, and the villi changes it sounds like celiac, but I guess the Dr is hesitant to misdiagnose. Thanks for any input.

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Nancym Enthusiast
Nancym
Posted

Yeah, they're weird these doctors. I guess they think that life on a gluten free diet is so horrible that one should be on the Midnight Express to death before prescribing such a diet.

northernsunshine Newbie
northernsunshine
Posted
Yeah, they're weird these doctors. I guess they think that life on a gluten free diet is so horrible that one should be on the Midnight Express to death before prescribing such a diet.

I'm really appreciative of my doctor. Great guy, but he sounded so sad for me when he called with the genetic test results. I'm not sad. I'm going to get better and I won't have to take a ton of drugs.

I didn't get a firm diagnosis either. What I got was, paraphrased, "You carry the gene. You have villous atrophy. You have these troubling symptoms. It could be celiac and in a few weeks at your appointment we'll discuss it." I told my doc I was going gluten-free immediately and he said that was a good idea. But he sounded sad.

I think that doctors are faced with so many patients that are non-compliant with their treatment programs they get jaded. But I also think most people diagnosed with celiac feel empowered. I know that since learning this is what is wrong with me, and the reason why I have been feeling so awful since early summer, I'm energized. I will do whatever it takes to get better and enjoy doing it. There is nothing sad or horrible about it.

nikky Contributor
nikky
Posted
In the meantime DS is to avoid wheat, which he tested mildly allergic to anyhow. I am baffled at all this. Based on his 97% IGA, and the villi changes it sounds like celiac, but I guess the Dr is hesitant to misdiagnose. Thanks for any input.

yea lots of doctors either diagnose you with the first thing they think of or are reluctant to diagnose you with anything unless they are 100% sure. My GI wanted to be 100% certain (given that im young and he didnt want to make me suffer unneccessarily) but my body had other ideas, hopefully your GI will be as insightful as mine and go with the blood tests. Good luck.

Southernserenity Newbie
Southernserenity
Posted
  • Author

Thanks for the comments. Actually I am satisfied with the kids GI Dr now, and prefer to have a Dr that wants to be 100% instead of one that gives a quick, yet not sure diagnosis.

Nonetheless it is a time consuming road to get answers with this. I have taught my kids to focus on what they can have instead of vice-versa. Until you are faced with a wheat allergy or celiac disease you don't really realize how our society is so *focused* on wheat. It is used in so many things...

Just waiting...

nikky Contributor
nikky
Posted
. Until you are faced with a wheat allergy or celiac disease you don't really realize how our society is so *focused* on wheat. It is used in so many things...

Just waiting...

yea its appauling the things its in.. and the things we cant have because it may contain traces of gluten luckily there are good alternitives out there

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      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
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      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
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