Confused About Results For My Children

[Mama of 6]

I am pretty confused about these results.

My daughter is 3 1/2 her results are

TTG IgA 2.1 (normal 19 and below)

TTG IgA negative

IGA 63mg (normal 18-132)

Everything looks normal for her However my sons is differant. He is 6 years old.

TTG IgA 2.2

TTG IgA Negative

IGA 16 mg (Normal 27-168)

so it looks like he is low in the bottom test. The dr said its not a marker for celiacs or gluten sensitivity that its actually a good thing but they want to test in a couple months. I looked up "low IGA, is it a marker for celiacs?" and from what I read it certainly can be. Why would the dr. tell me differant? I am really confused could someone please give me clarity?

[MitziG]

Because doctors are pretty ignorant about Celiac. Neither of your children were given a complete celiac panel, they are missing two of the most specific tests, and because your son is IGA deficient, the celiac tests they ran on him are invalid.

They are missing the DGP (deamidated gluten peptides) and the EMA (endomysial antibodies) I believe there is one more test, the name of which escapes me but can be found on this forum. You need to go back and insist they run the specific required tests for Celiac. I assume your kids are symptomatic as well?

[Sesara]

BTW, in the course of my own reading, I discovered that people who are IGA deficient are 10 to 15 times more likely to develop celiac disease. It is an immunodeficency so they are also prone to other issues, so if your son is IgA deficient, you may want to read up on it.

[Mama of 6]

Thank you so much for your reply, I have been reading so much that my eyeballs feel like there gonna fall out of my head. I also did read about the missing test (ttg) that my son is missing. I requested it be ordered, the Dr talked to me like I was crazy, but said she would order it anyway. I was so sure that all my kids would test positive right away I am feeling pretty discouraged. I myself was the first to go on the diet because of so many symptoms. The first three days I felt great than it has been down hill since. Worst than I was in the first place, I am starting to wonder if its something else.

I am the kind of person that needs clear answers, but I'm also the kind of person that has no problem asking for them. My son that had the low level has always has some things happen that I would think"well that's kinda weird" things like diarrhea out of no were than fine the next day, body aching all over, weird rashes, shirt stature especially for how tal his dad and I are, and ADD type behavior at school.

My daughter who was tested but nothing showed has pretty much been sick since two months. She had a bladder infection, at 8month she had a rare platter disorder called ITP (her immune system wad attacking her platelets) it finally reset itself at around 2 and about 9 months ago was diagnosed with von willebrands which is another bleeding disorder that doesn't have to do with her immune system. Inbetween all of this I have brought her to the Dr countless times for hair loss, belly aches, pale skin, and rashes. she was also put on a high fat diet because she is in the 4% for growth and use to BE a very chubby baby. Now when I read about the symptoms in children with celiacs I am baffled..why in the world would her Dr not have tested her before, just for three hair loss, under Worthy, and belly ache. And IM confused at why nothing showed on any of her levels. If Any body has any advice I would live to hear it. And thanks to everyone on here. I am so glad I found this place.

[Sesara]

I understand what you mean about reading everything you can find. I'm a research junkie, and I hate being the pushy mom - I was able to believe that my son was "fine" until his diarrhea stretched on for months, I was convincing myself and everyone else, because my pediatrician was so unconcerned by the fact that he'd fallen from 80th to 8th percentile for weight between 6 and 18 months, and didn't seem phased by his dropoff in height either (90th to 50th in the same time frame). Now we're fighting the same arguments with his pediatric GI, who did a similarly minimal panel on my son (whose results were strikingly similar to your daughter's, btw). We are scheduled for endoscopy with biopsy on Tuesday, and while I'm not sure that I can get this doctor to listen to me, at least this group has empowered me to be able to go in, research in hand, and ask why the doctor is only planning on doing the bare minimum of 1-2 samples, when every reputable Celiac center and study recommends more.

Good luck on your journey and I hope you get answers soon.

[Cara in Boston]

From what I understand, they test the overall total IgA to determine if the other IgA tests will be useful. The test itself does not indicate celiac disease, it just points doctors in the direction of which tests are needed. If a person is IgA deficient (and it looks like your son is) then all celiac tests linked to IgA are useless. They need to switch and test for IgG.

In any case, NEITHER of your kids got the full panel of tests, so you cannot rule out celiac disease. You need to go back for more (maybe with a different, more up-to-date doctor) and your son specifically needs the same tests, but focusing on IgG.

My son was perfectly normal on all the IgA tests (TTG IgA, DGP IgA, etc.) and only showed elevated levels on the IgG tests. He was found to be VERY positive on the biopsy and it took almost a year of being gluten-free to bring the levels down. He had mainly behavioral symptoms but did get joint aches, rashes, pale skin, dark circles, etc. He was diagnosed at age 5.

Ask to be referred to a GI with experience with celiac and start fresh. DO NOT limit gluten until you are completely done testing . . . that will also cause the tests to be negative (even if they have celiac).

Cara

[Mama of 6]

Thank you so much, I totally agree in getting a GI everyone has been so helpful

[MitziG]

You said you are feeling worse on the gluten-free diet and are wondering if you are on the wrong path.

You aren't. Feeling worse off gluten is very common. In many people gluten has an opiate effect and will cause miserable withdrawal symptoms. It also takes some time for the body to right itself when the onslaught of gluten it is used to is taken away.

My celiac daughter went thru 6 months of hell after going gluten-free. She threw up constantly, always nauseous, caught every virus there was and developed a severe case of shingles in her eardrum that took her hearing for several months. It took a long time for her to feel ok. She felt FINE eating gluten before dx, yet her biopsy showed significant damage. A lot of people feel worse before they feel better, so do not let a lack of improvement lead you back to eating that poison!

Get the full panel on the kids. And remember, it only catches 70% of celiacs. Also, there is no test for gluten intolerance, and it can be just as severe.