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Having Oldest Son Retested

Roda

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Roda Rising Star
Roda
Posted

Last November I had my children tested for celiac. I did not find out until after their blood was drawn that the reference lab (ARUP) did not accept any tests listed as a "panel". The doctor wrote an order for a celiac panel and all the lab performed was a total IgA and the tTG. I have again asked for the full panel for my oldest son and asked the doctor to write out all the individual tests. They did and here is what they ordered: tTG, Gliadin Antibody, IgA & IgG, Endomysial Antibody (EMA) screen, and Reticulin IgA Autoantibodies. All is good but I have two questions. First I have no idea what the last one is. Second I checked with the reference lab to make sure that all of the individual tests would be done. They would do all but the EMA stateing that they were considered the same test since they check for the same thing. I have read on here that people get both the tTG and the EMA done. The only time the lab will do the EMA is if the tTG is positive. I am trying to decide if it is worth it to pursue the EMA test at another lab. If I do I will be subject to my out of network deductible and will have to pay for it out of pocket. Otherwise if I go with the one in network I don't have to pay anything(I have met that deductible). Is it really important to have both done? Thanks.

edit: Here is the link from the lab.

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Roda Rising Star
Roda
Posted
  • Author

Anyone have any thoughts? I want to make sure we have the proper screening done this time. Would elevated gliadin antibodies without elevated tTG be enough evidence to go gluten free?

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hi Roda,

I don't know anything about the tests but I did wonder what your reason was for retesting? Why just your oldest and not all your children?

This whole thing has made me so paranoid I want everyone I know to be gluten free just incase..... but my kids think I'm going a little bit over board.

RA

Roda Rising Star
Roda
Posted
  • Author
Hi Roda,

I don't know anything about the tests but I did wonder what your reason was for retesting? Why just your oldest and not all your children?

This whole thing has made me so paranoid I want everyone I know to be gluten free just incase..... but my kids think I'm going a little bit over board.

RA

I only have two boys. I am only having the oldest rescreened because he is the one I am having problems with. There does not seem to be issues with the youngest one at this time. I will probably have the entire sreen done again on the litle one at his 5 year check up which is coming up soon. The oldest is having alot of allergy flare ups and some behavior problems and he has a hx of bad constipation as a baby till 4yrs.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Will you do a gluten challenge regardless of the results of the testing?

Roda Rising Star
Roda
Posted
  • Author
Will you do a gluten challenge regardless of the results of the testing?

I would like to give it a fair go if I can get my husband on board. He has a problem doing it if all his tests come back "normal". We tried him on it for a week last spring, but it didn't last since hubby did not think it necessary. I didn't notice any difference, but one week was not enough. Need to give it a good month. The specialist on Tuesday said it could be gluten, his allergies, or his singulair causing behavior problems. I need to get him screened first and then eliminate one thing at a time. I don't want to do everything at once. He was off his singular for 2 months and I did not see any difference in his allergy symptoms and he had no behavioral issues. He did complain of his chest hurting when he ran though. He had a methacholine challange test in July and did not pass it so he has mild well controlled asthma. So back on it we went. I've got a nose spray they want me to try for his allergy symptoms for a week. After that I'm going to take him off the singular and see how he does. Hopefully by then we'll have his labs back and will discuss it with the specialist. Is there anyone out there that can shed some light on the lab test question? Many thanks.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Anyone have any thoughts? I want to make sure we have the proper screening done this time. Would elevated gliadin antibodies without elevated tTG be enough evidence to go gluten free?

Copied from a post by Frantastk

Your results sound very similar to my daughter's results. She had a negative ttg blood test, but positive antigliadin IGA.

She says that the dr is recommending a gluten free diet, so for her the answer was yes.

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