Blood Test Results...what Do You Think...ped Said Weak Positive

[carecare]

I am not sure what to think. The blood test they ran was not as complete as some that are out there. I think she did it as just a baseline...and would leave it up to the GI to do more if something came up.

His test was the INOVA Quanta Lite:

Deamidated Gliadin IgA 5

paper states <20 = negative

Deamidated Gliadin IgG flagged as >30 (high)

paper states >30 = positive

Transglutaminase 1

<4 =negative

IgA 206

52 - 318 mg/dL

Not sure what the 206 means...does it mean betweeen 52- 318 is normal...that one doesn't get explained.

So the pediatrician called (well, her nurse) and said the results were "weak positive." Does that deamidated gliadin above 30 mean he's most likely celiac? My husband does not want to put him through any more testing and believes we should just go with it and say he's celiac. I guess my only thoughts would be if he's not really celiac we wouldn't have to be as strict with our kitchen...and wouldn't have to worry so much about him getting just a little gluten from time to time. However, if he is...I'd like to really make sure we as a family treat it as so...and can also for sure tell other family members he is celiac so they will know for their own health history. My son wants to go gluten free because he knows if it's the issue his muscles aches and mouth sores will improve...and maybe even his weird visual problems too. I called the Ped. GI and we can't get in until September 26th...and that would be for just a normal office visit. After that I'm sure they'd want to confirm with a biopsy but we do not want him to have to suffer for who knows how much longer...when he can start healing today.

What are your thoughts on the test results?

Thanks!

[Skylark]

The total IgA is normal, which means the tests are valid. Without the TTG you can't be 100% certain but that deamidated gliadin IgG is a very sensitive test. He may be so-called latent celiac, where the disease hasn't progressed to TTG antibodies.

It's OK to go without further testing, but he must live as if he is celiac. Never any CC, keep gluten to an absolute minimum, and so forth. This is what I told my doctor I would do when I opted out of challenge and testing because if I am celiac, it is far too risky for me to be exposed to gluten.

As for family, you tell them exactly what you know. He may be celiac, so please don't feed him wheat - it makes him ill. He opted out of further testing in order to get healthy. If he feels better off gluten, family members should be tested anyway. It doesn't really matter whether he goes on to get the endoscopy as far as them evaulating their own results.

One question though - will your pediatrician diagnose him as celiac for school? Some parents have trouble getting schools to take the diet seriously without a note from a doctor confirming the celiac disease. If your pediatrician will diagnose him for school purposes, you're good to go.

[rosetapper23]

I agree 100% with Skylark!

[carecare]

Thanks for the replies . Yeah, I've been reading more and more about the deamidated gliadin IgG and see that it is a pretty sensitive test. I think we'll go along as if he definitely is celiac as far as our immediate family is concerned. I may end up seeing about getting the genetic testing done just for more food for though if you know what I mean....and may consider calling the Ped. and ask for this same celiac test to be run on my daughter who is going to be heading off to college in a couple weeks. I'm really concerned about her diet that will be eating in the college cafeteria for every meal. I know the head kitchen lady had been trying to get more gluten free meals and items but it wasn't her primary focus this year...but she did say that if my daughter needed anything to just give them a call. I'm hoping they'll work with her dietary needs and I hope my daughter decides it's worth it!

Thanks again for all your support. I think I finally understand those tests.

[GottaSki]

I second Skylark. My kids all tested negative but all improved gluten-free. Your doctor already said weak positive, so that combined with improvement from eliminating gluten should be enough for a diagnosis should you need one.

Personally I think the most important part of your statement is that your son is ready to go gluten-free. If his symptoms improve without gluten, you can confidently tell family/friends/school that your son has Celiac Disease and must remain completely gluten free.

Good luck!

[carecare]

Thank you Lisa. Yep, that's the plan. Day one...easy as pie..

Oh and forgot to mention...we don't have to worry too much about the school at this point as he's schooled at home.

[GottaSki]

My teens and my daughter's kids never had official dx and have not as yet run into a situation when they need one.

Hope your son feels better very soon. Good Luck!