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Benshell

6 Yr Old Diagnosed With Celiac, No Symptoms?

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Hi..this is my first time here and I'm hoping to find as much info as the gastro dr didn't help at all, just threw papers at me, told me to read them and come back in a month with all my questions. I'll try to keep it short but give you as much info as possible.

My daughter is hypothyroid and has been treated since birth, when switching to a new BETTER endocrinologist, the dr tested her for celiac with her blood test which came back positive. However, she has NO SYMPTOMS according to the list/research out there. She has been growing fine, her vitamen levels are fine, her development is fine, her bowel movements are fine, etc...

The dr is re-testing her, but wants her to go on this gluten free diet after the blood re-test. She said cheating a little bit is OK in the beginning, but by the time she's in college she'll need her own utensils and microwave, etc.., without any explaination why cheating would be OK now, but not in 12 years. Is it once she goes on the gluten-free diet her system will become sensative to it, even though it isn't now?

ALso, I read that people with no symptoms but test positive undergo an endoscopy to check the small intestine villi, but the dr said its not necessary as her #'s were very high. Obviously I don't want to put my daughter through a medical procedure thats not necessary, but I also don't want to make such a dragstic diet change if not necessary. Thoughts?

Lastly, I'm also sending her to an immunologist as with both thyroid and now celiac I'm scared of what other auto-immune disorders she may have as she tends to get sick very easily and often (more than other kids).

Any help, guidance, suggested reading, etc.. would be greatly appreciated. Right now I'm feeling scared, overwhelmed and confused.

BTW we're seeing another pediatric gastro dr on friday as a 2nd opinion and maybe he'll be a little more helpful. I want someone who will talk to me and my daughter, not just ignore her as she has questions too.

Thank you.

M in NY

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If the doctor did the standard celiac panel and and the numbers were very high, all I an tell you is that false positives on these tests are exceedingly rare. You can, of course, still have an endoscopy done if you want, but it might be tough if the doctor won't order it.

The vast majority of people with celiac have few or no symptoms (or they've been misdiagnosed). However, even symptomless celiac can lead to future health complications and increased risk for a whole host of things. If your daughter has celiac, she should go gluten-free with no cheating (which is tougher to do when you haven't felt bad).

richard

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You mean, she's only six and the doctor said she could cheat on her diet until she's in college? Get a new doctor!!! That's ridiculous.

Get Dr. Green's book "Celiac Disease; a Hidden Epidemic". Go to some national sites (the National Foundation for Celiac Awareness, the University of Chicago Celiac Center) to get some info.

If her celiac test results were high, she almost definitely is celiac. Bring your test results with you to the appointment so you, I had incomplete testing done and was gluten-free for awhile and couldn't take more tests. Don't put her on a gluten-free diet yet, wait to get your second opinion, because if she does the new tests will be compromised (you need gluten in your system to detect the antibodies that indicate celiac).

If she is celiac, I feel for you! I have a three year old with celiac. It will be a big change, not only for her, but for your whole household. You will also need to get you, your husband, and any siblings tested for celiac, since it has a genetic component (I didn't get tested and found out I was celiac the hard way, after much pain!). Then get yourself to a local support group, if you have one.

Good luck!

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What you may find, as she goes gluten free, is that little problems clear up. You say she has no symptoms but it may be that you don't recognize the symptoms. I started the diet to clear up my rash but a whole host of other problems cleared up that I never expected.

I think you're smart to get a second opinion but as the PP pointed out, high blood work results are very telling. You can post those results here, if you wish, for another opinion.

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i agree with the other posts. My daughter wasn't diagnosed until she got really sick as a 15 year old. But when she went gluten free, other symptoms we had just thought were "Joanna" started to abate. Now we realize that she really did have the other symptoms, we just didn't know it--

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I was diagnosed young, probably by blood test. (I don't remember; my mother refuses to divulge the details.) But at the time, I had no major symptoms and eventually went off the diet because the family thinking was that there was no way I could have celiac. But I was a sickly child, with hypoglycemia, bouts of bronchitis every couple months, a persistent cough, and constant exhaustion. Later, migraines would be added to the list, along with severe cramping, insomnia, and no tolerance for beer. The more "classic" symptoms showed up last.

We really should have paid attention sooner. My sister shakes her head because if I'd stuck to the diet from the time I was diagnosed, we would have found, as we are now, that even the seeming unrelated symptoms went away. It took me ten years to return to the diet, and in that time, I've become so overly sensitive that I have trouble eating in my college's dining halls. I've also ended up with multiple other sensitivities.

Get your second opinion; get a third if necessary. But don't think that this is something you can cheat at, or even that she shows no symptoms. "Sickly" sounds a hell of a lot like the one thing everyone could agree with on me. And that's slowly went away as my immune system starts attacking bugs instead of itself.

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