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Help Needed With Test Results

surprisedbyceliac

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surprisedbyceliac Newbie
surprisedbyceliac
Posted

I have a question about lab tests. Our pediatrician ordered the celiac panel for my daughter based on the fact that her dad has gluten intolerance and she has had daily gas for years. Here are her results - 

 

Gluten IGG 52.3   reference <2.0 mcg/ml

Casein IGG 20.5 reference <2.0 mcg/ml

Tissue Transglutaminase AB, IGA 5 , <4 No antibody detected, > or = 4 Antibody detected

Immunoglobulin A 127  reference range 64-246 mg/dl

Endomysial antibody SCR (IGA) W/refl to titer  - Positive

Endomysial Antibody titer 1:20  reference range < 1:5 titer

 

Does this look like a weak positive? We have an endoscopy scheduled but am concerned about what to do if the biopsies are negative. Can you give your opinion?

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surprisedbyceliac Newbie
surprisedbyceliac
Posted
  • Author

Also, would it make a difference in her labs if she was just eating gluten two times a week? We pretty much eat gluten free at home for my husband but she eats gluten when we are out of the house.

GottaSki Mentor
GottaSki
Posted

Yes, positive is positive. Especially the positve EMA. Perhaps you caught this early or her limited consumption of gluten has effected the results.

Two things:

Make sure she is ingesting at least one slice of glutenous bread each day leading up to the endoscopic biopsies.

Request the balance of celiac antibody tests:

tTG-IgG

DGP-IgA

DGP-IgG

Hang in there :)

nvsmom Community Regular
nvsmom
Posted

I completely agree with Lisa (GottaSki), a positive celiacs tets is a positive for celiac disease. The EMA IgA is considered to be about 98-100% specific to celiac disease; that means that if you have a positive result, there is a 0-2% chance it is caused by something else.  In the world of blood testing, that is a very strong result.

 

Also, the EMA IgA tends to show up in the more advanced cases of celiac disease.  It's not uncommon to be negative in children because they are only a few years or months into the disease. If her EMA IgA is positive while eating "gluten-light", then she's probably had the disease for a few years... That's my interpretation anyways. 

 

Two positive tests is a strong positive.  I was actually diagnosed with a positive EMA IgA and tTG IgA too, and there is no doubt at all in my mind that I have celiac disease.  Even if the endoscopic biopsy ends up being negative, she still has celiac disease; a negative just means they missed biopsying the damage, which happens to 1 in 5 celics.

 

To get the most accurate biopsy possible, so she is part of the 4/5 who has a result that shows celiac disease, request that a minimum of 6 samples be biopsied, 8 is better. Also, increase her gluten consumption until the biopsy. Perhaps an extra Oreo or muffin for a bedtime snack?  About 1-2 slices of bread in the 2-4 weeks prior to the biopsy is recommended for adults, so 1 slice of bread or the equivalent may work for her if she is very young.

 

Celioac is a genetically k=linked disease so you may want to test the rest of the family, and if they are negative you'll need to repeat testing every couple of years for life.

 

Welcome to the board and best wishes to you.

surprisedbyceliac Newbie
surprisedbyceliac
Posted
  • Author

Thank you! She loves gluten containing items so we have gone to Trader Joes and stocked up on anything that she wants with gluten with the thought that she should get it in now while she can. We are loading the other kids up as well.

 

My husband probably has celiac but he was tested last December when we hadn't read much about celiac testing and they only tested his IGA antibodies. They didn't even test his IGA level with it. It was negative but he has such bad constipation when he eats gluten that he doesn't want to gluten challenge again. My worry is he is not careful with contamination because he thinks that he is only gluten intolerant. He also cheats occasionally when there isn't other non-gluten food options.

BlessedMommy Rising Star
BlessedMommy
Posted

If he does have celiac, then not being 100% gluten free will hurt him. If your daughter is celiac, then it is very likely that he does have celiac, since it's genetic.

  • 4 weeks later...
surprisedbyceliac Newbie
surprisedbyceliac
Posted
  • Author

Well, just a follow up on the biopsy. The biopsy did show changes to the villi so she has confirmed celiac. They didn't give a Marsh score which I thought was standard, isn't it?

Anyways, I have myself and two of my other girls tested in the morning. I have two questions about this? What tests do they recommend for screening and if the other two girls have positive serology, can they be diagnosed without an EGD?

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BlessedMommy Rising Star
BlessedMommy
Posted

Congrats on getting a diagnosis! Best wishes for quick healing for her.

 

Did your husband decide whether or not to pursue a gluten challenge and more testing?

surprisedbyceliac Newbie
surprisedbyceliac
Posted
  • Author

He doesn't want to do the gluten challenge because he would be so miserable but is thinking more about being completely gluten free and not cheating.

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