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Hi all.. I'm a celiac mom, with a possibly celiac daughter. I'm posting our current experience, in case anyone has any helpful comments!

This summer I took her gluten free, and when we challenged her, nothing seemed to change. All the reasons I had for checking her are more longterm problems, really. I spoke to my doctor about a blood test to start, and she said, "I would expect her to be anemic at the very least. Is she?" I said no, so we decided to hold off testing. The doc didn't meet my daughter, we just discussed it during my appointment.

We then had her eyes checked, to see if that is the source of the headaches. Her eyes are fine, but the eye doctor said, "she looks anemic to me, and that could be the cause of her headaches. Have you had her blood checked?"

So here we go loopty-loo! Once the doctor completes her office move next week, I guess we'll go have DD stuck with needles. I hate it, but my celiac's ran wild for at least 16 years before it was figured out, and I don't want that for my little girl.

Has anyone seen anemia as a silent marker for celiac's? After the doc said this, I remembered that I was anemic as a kid, and took iron supplements for most of my childhood. But no one in the USA was looking for celiac's in 1988....

Her main symptom, and I agree this is silly sort-of, is very slow-growing hair and insomnia. My hair grew so slowly my whole life that it was difficult to even maintain the same length, much less grow it. Since I went gluten-free, it grows an inch or more per month. My insomnia, which used to require medication, is mostly gone. Maybe it is silly to suspect celiac's over such small things, and I don't wish this on anyone, but if she does have it, I don't want her to suffer like I did before it is found.

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Sounds a lot like our situation. My son has had recurrent anemia - but mild and able to resolve on a multivit with iron - his entire life. His iron stores never seem to build up though. When he was a baby and toddler he had constant diarrhea but that eventually went away. Now his GI tract is fine it seems. We have no other symptom that we can point to on a day to day basis. His 8 week gluten-free diet followed by challenge didn't seem to make much difference. It does seem somewhat silly to restrict his diet for such mild symptoms. But, like you, I don't want to let things get worse for years and years.

The main reason I keep pursuing it is that his tTG was moderately elevated. But scope was negative. So, I guess that leaves us in limbo. He's considered a "potential" celiac - GI doc says let him know if more obvious symptoms appear. I hate sitting around waiting for things to get really bad before doing anything, but I also hate restricting him if its not necessary.

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Hmmm... :angry:

How frustrating!

I'm in the same boat. It is difficult, isn't it? My diet is such a problem, and during the weeks we did gluten free for her it was really hard. Socially it would be a nightmare for her.

I will have her tested, and see where that goes... :ph34r:

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My DD and I both have celiac. She had anemia and very slow growing hair. Since starting the diet a few months ago her hair has begun to grow faster and I've noticed that I need to cut her fingernails more often too.

Looking back, I've always had low iron and at times it was low enough to be anemia. If DD hadn't been diagnosed, I would never have known I had celiac.

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I had anemia as my main symptom for years doctors told me. I have been on iron pills since I was 17 or 18. Also have had iron iv and blood transfusions. Went to a couple cancer clinics to get check for all types of cancer a couple times. All came back negative. We could never figure out why till all kind of symptoms came along and had to be in the hospital. Then they finally tested for celiac and it was positive I still have some iron problems cause I have a lot of damaged to my intestines but doctor said it will get better as my intestines heal.

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