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party-of-eight Newbie
party-of-eight
Posted

Hello everyone!! I just got back from the doctor with my 9yo. I requested to have her tested for celiac disease. Almost 2 months ago we discovered that the rash my husband has on his backside is DH. He has been gluten-free for a month and a half and he has had some great improvements in his health(and his rash). We have not had him tested yet because we would rather wait until the 1st of the year for deductable reasons.

So anyway, with all of the reading and research I have been doing on gluten-free living and celiac disease I have come across numerous symptoms that match my 9yo daughter. She has....

-Extensive dental problems(the rest of my kids have barely had a cavity)

-She is short

-She bloats badly around her middle

-She craves carbs and sneaks food constantly

-She can be irritable and moody

-She had a severe problem with dairy as a baby (I breastfed her and had to eliminate dairy)

-A few years ago she had her blood clotting factors come back way outside normal. By the time we saw a specialist they were closer to normal

-She gets dark circles under her eyes

-She sleeps more than my other kids

I took her to the doc today who begrudgingly ordered the blood tests but insisted that they would probably come back fine. She claimed that celiac disease starts in infancy and children with celiac disease are thin and small (which my daughter isn't). I know that that isn't always true.

So am I crazy?? Do these things sound like a cause to suspect celiac disease in a child with a father who has DH?

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Lisa Mentor
Lisa
Posted

Hello everyone!! I just got back from the doctor with my 9yo. I requested to have her tested for celiac disease. Almost 2 months ago we discovered that the rash my husband has on his backside is DH. He has been gluten-free for a month and a half and he has had some great improvements in his health(and his rash). We have not had him tested yet because we would rather wait until the 1st of the year for deductable reasons.

So anyway, with all of the reading and research I have been doing on gluten-free living and celiac disease I have come across numerous symptoms that match my 9yo daughter. She has....

-Extensive dental problems(the rest of my kids have barely had a cavity)

-She is short

-She bloats badly around her middle

-She craves carbs and sneaks food constantly

-She can be irritable and moody

-She had a severe problem with dairy as a baby (I breastfed her and had to eliminate dairy)

-A few years ago she had her blood clotting factors come back way outside normal. By the time we saw a specialist they were closer to normal

-She gets dark circles under her eyes

-She sleeps more than my other kids

I took her to the doc today who begrudgingly ordered the blood tests but insisted that they would probably come back fine. She claimed that celiac disease starts in infancy and children with celiac disease are thin and small (which my daughter isn't). I know that that isn't always true.

So am I crazy?? Do these things sound like a cause to suspect celiac disease in a child with a father who has DH?

No crazy lady here!! Your doctor is ill informed. Celiac can occur at every age.Your children may have a genetic pre-disposition as well (although no guarantee that they will develop celiac disease). In most people, it takes an average of 12 years for an official diagnosis. It was formerly known as a childhood disease. It is diagnosed in all ages and unfortunately often too late, when other more serious diseased have moved in.

Please insist on a full Celiac Panel for your daughter. Gene tests are also available. The gene testing will let you know if you are genetically susceptible to Celiac at twenty percent, or not capable of developing celiac disease.

Please keep us informed and hope we can be helpful. :)

Skylark Collaborator
Skylark
Posted

Your doctor has not read anything on celiac since medical school, and I suspect that was a long time ago. Celiac is genetic and the single biggest risk factor is a first-degree relative with celiac. It does not always start in infancy and in fact can start any time in life.

If the blood tests come back normal, find a more openminded doctor and push for a biopsy. Once the testing is done you can try her on the diet, as not everyone who is gluten sensitive gets positive results on the celiac tests.

BeckyWJ Rookie
BeckyWJ
Posted

My daughter was 9 yo when we figured out her migraines and hallucinations were caused by gluten. Some people thought we were crazy by believing gluten could cause her problems. But after a little over a year being gluten free, the skeptics are skeptics no more. Even had an er doctor say it could be a psychiatric issue. And we found out it was gluten on our own because no doctor ever mentioned celiac disease. So she's never even had a formal diagnosis. She had a celiac panel done with some slightly elevated numbers after we discovered gluten took care of the problem.

All that to say, most doctors are ill-informed about celiac. Some act like it's not even a "real" disease. Research proves otherwise. So...once you're finished with testing, even if results are negative, you could put her on gluten free anyway and see what the results are. Just like your dh...results don't lie.

Yes, your daughters symptoms could be caused by gluten. And I think you're a great mom for figuring this out and insisting her dr do the blood tests. Insist on having a copy of the results...some people on here can decipher them pretty well!

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