Confusion about my son's results

[lizzie42]

I'm confused about these results. We are not seeing the GI doc. He's totally out of our price range. We can just do gluten free like we do for my daughter who was off the charts on all of these. Any thoughts? Maybe we caught it early? He's only 5. 

His EMA was negative. That got cut out of the photo. 

[Diana Swales]

If your son is only 5 and his sister is diagnosed celiac disease, is it a possibility that he has been eating a majority gluten free diet with his sister. 

If this is the case his result would be low or negative. 

The choice would be yours as to whether to put him in onto a full gluten diet for 4 -6 weeks, handle and NOTE the changes in his diet, behavour and body symptons.  Then to test again and see if there is a difference. 

The other choice is to just continue on the gluten free diet without any medical diagnosis. 

Remembering that should you decide to actually have the test in the future you will have to run the gluten challenge. 

Please let us know how we can support you

 

[trents]

@lizzie42,

Are the results you posted above for your daughter or for your son? If these are for your 5 year-old son, they are strongly positive and definitely suggest celiac disease. The ttg-iga is the centerpiece of celiac disease antibody testing and at 59 it is a strong positive. If you are wondering why some of the other tests are negative, you need to know that is normal. Seldom are all the antibody tests positive on a complete celiac panel.

[lizzie42]

These are my sons results. My daughter was high positive on everything and maxed out the tests in addition to being anemic, bad rash, etc. 

Yes, he has been eating mostly gluten free (not completely). He was also on a high dose of budosinide at the time of testing due to some asthma and sickness. I didn't realize that affects the results. 

This test along with my daughter being so sick with it prompted the pediatrician to diagnose him. We can always do a gluten challenge in the future. We will do that with our 1 year old. We will have her eat school lunch when she goes to prek and then test after a couple months. 

[trents]

@lizzie42,

So, I'm confused with what you are uncertain about. Do you really have any doubt that your 5 year-old son has celiac disease? Is it because he isn't exhibiting anemia and the rash as did your daughter? The genes are certainly there and the antibody testing certainly indicates celiac. And given the fact that he was on a reduced gluten diet and on a steroidal medication (which would likely suppress immune responses) do you really have any doubt? If you can't afford the GI consult with endoscopy/biopsy, why would you consider a gluten challenge after removing the remainder of the gluten from his diet? Have you considered that his asthma and "sickness" may be tied to celiac disease?

[lizzie42]

When I originally posted I hadn't talked to the pediatrician yet and didn't realize about the budosinide. Now I feel pretty confident. I was concerned that all of the tests didn't come back positive - that seemed kind of ambiguous to me. I didn't realize that was common. Do a lot of people on here have a positive tTG but negative other tests? I thought the EMA was pretty "gold standard." 

And yes I do now wonder about the asthma! I hope being gluten free will improve that! 

[lizzie42]

But yes seeing all those negatives does give me a bit of doubt! I feel confident but those results give me a seed of doubt. Especially since it's a lifelong diet for him! 

[trents]

Most doctors don't even order anything besides the tTG-IGA and maybe total IGA when doing blood testing for celiac disease. The EMA is the very first celiac blood antibody test that was developed and has largely been replaced by the tTG-IGA which is less expensive to run in the lab. My understanding is they both pretty much check for the same thing. The IGG tests are second tier tools that are less specific for celiac disease. It is not at all uncommon for the EMA and the tTG-IGA to disagree with one another. We frequently see this on the forum. I do not know why.

Please realize that doctors typically run a number of tests when diagnosing a medical condition. If there was one test that was foolproof, there would not be a need for other tests and other testing modalities. It works that way with many or most diseases. 

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.