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Can Someone Guide Me Through Testing?

momtok&m

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momtok&m Explorer
momtok&m
Posted

After a few months of record keeping, our pediatrician gave us the diagnosis of gluten intolerance. She's been gluten free for about a month, well she sneaks dog food so I guess she really isn't gluten-free ;) Anyway, part of me wants to know if it's Celiac and the other part of me doesn't care, she can't have it and that's that! So, I asked her doc to include testing with her upcoming blood work. He was happy to do so and he ordered the Celiac panel. Now I'm so confused. Since she's under 2 will it work? Since she's gluten-free will it work? Should I give her a little gluten prior to the test? Her reactions weren't too bad unless she ate wheat teething biscuits then it was immediate vomiting. I don't want to hurt her but I want the test to work the way it's supposed to. I called the lab and the guy wasn't knowledgeable enough to help me out. Her ped. said no gluten. I don't know if the geneitc test is covered by our insurance so that's our last resort. This is worse than trying to plan her meals!!!

Thanks!

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EmilyR83 Rookie
EmilyR83
Posted

you would have to give her gluten(and plenty of it) for 6 weeks to 3 months to get a postitive test-if its celiacs. If she has a gluten intolerance and you know for sure, what will change if the test comes back positive for celiacs? If your answer is nothing, I would hold off and do the test when she is older. My son had a positive celiac blood test at 13 months and we decided not to do the endoscopy until he is older. We are strict as can be to avoid 100% of all gluten. Good luck on your decision.

momtok&m Explorer
momtok&m
Posted
  • Author

And the biopsy would only show damage if she's consuming gluten? I guess the reason for the test would be the ability to tell family that she tested positive so they don't think I'm some nutjob mom who is overreacting to normal gas pains, vomiting and diaper rash. I feel like if I say "gluten intolerant" people tend to blow it off but testing positive for something really makes all the difference. KWIM?

Lisa Mentor
Lisa
Posted

The Celiac Blood Panel is highly unreliable for children under the age of five. Yes, she would have to be consuming gluten for increased accuracy.

Knowing that her doctors has prescribed a gluten free diet, and that she get violently sick after consuming gluten...would be strong enough evidence for your family to comply with your requirements.

jenny-ann Rookie
jenny-ann
Posted

Did you ask if her celiac panel included the DNA testing? We're in a similar situation and have decided to do the genetic testing even if we end up paying for it. As far as I've read (someone PLEASE correct me if you have better information)not having the genes leaves them with a less than 5% possibilty of having celiac. In our case if she doesn't have the genes we will be at peace without a diagnosis, keep her gluten free and continue to research other causes for her wheat 'intolerance'. Because she has the symptoms, if she does have the gene(s) we will ask for the diagnosis without the biopsy. If they refuse to diagnose it we will label her ourselves and no one except her doctor, my husband and I will know.

Sorry to go on about me/us/my daughter. I felt it was the best way to expressed my opinion without seeming to tell you what to do...

I hope you get solid answers, quickly!

MaryannG Rookie
MaryannG
Posted

Personally I would do the celiac panel but like someone siad your child will need to eat plenty of gluten or else you will get an innacurate result because you need gluten in your system to tell if you have celiac. The only reason I would do this is because you can grow out of an allergy but you can't of celiac so if there is any chance of growing out of it I'd wnat to know, but it's really your own personal choice. As for the genetic testing, my husband and I both got it done, but we didn't for our kids. It turns out we both have the gene, but neither have celiac atleast as of yet. There are 2 genes you can have, and we each have a different one. One of the genes has a 90% chance of getting it and the other has a 10% chance (this info is according to my dr at the celiac center at columbia prestbyterian in NYC). We didn't test the kids because knowing we each have a gene means the kids will most likely have the gene. These genes are also linked to diabetes and other things so it doesn't mean you will def get celiac. So it really depends on what you would do with this info to make the decision.

momtok&m Explorer
momtok&m
Posted
  • Author

...and it just gets more confusing!!! :unsure:

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Lisa Mentor
Lisa
Posted

One of the genes has a 90% chance of getting it and the other has a 10% chance (this info is according to my dr at the celiac center at columbia prestbyterian in NYC).

Here is a clarification on your percentages:

Open Original Shared Link

More than 97% of patients with celiac disease have at least one of the two genes. Most patients (more than 90%) carry the DQ2 gene. Fewer than 10% carry the DQ8 gene. In the near future, researchers will likely discover additional genes that predispose an individual to celiac disease.

Important: Having these so-called "celiac disease genes" does not mean you're guaranteed to have celiac disease. In fact, majority of people with the genes never develop celiac disease. the the vast majority will not developing the disease. Having the genes only means you have a risk of someday developing celiac disease. On the other hand, if you don't have these genes, your odds of developing celiac disease are slim to none.

A DNA test cannot tell whether or not you have a certain disease. It can only show whether or not you have the genes that predispose to the disorder. Just because a person has DQ8 or DQ2, it does not mean that celiac disease is inevitable. It just means this person might develop a sensitivity to gluten.

Without the DQ2 or DQ8 genes, however, a person is extremely unlikely to develop celiac disease.

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