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Trying To Sort Out Symptoms
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7 posts in this topic

Hi. I am the parent of a five year old child whom I suspect may have Celiac Disease. I have mentioned my hunch to her pediatrician who told me that Celiac is extremely rare (which I know it's not) and that she just didn't "see" enough evidence to have her tested.

I am here to get some opinions on whether or not I should push to have the bloodwork done. It will come at my expense (we have no insurance) and my daughter will *FLIP* at the needle, so I don't want to do this unneccesarily. I just need a reality check here, because it is killing me to think that I am causing her damage with the food that I am feeding her. Her name is Clara.

Clara does not have the "classic" symptoms. She does NOT have diarrhea, bloating, or failure to thrive. She DOES have stomach aches every day and complaints of "I don't feel good" every day. She is also lactose intolerant (which I figured out on my own; the Dr. was no help there either). She gets tired easily.

These symptoms come and go constantly. It breaks my heart.

If those symptoms are not enough evidence on their own, I suspect that I might have it too. I do not have any abdominal distress, but in my research on Celiac Disease, I learned about Dermatitis Herpetiformis, and I think I may have that. The patches on my skin, mostly on my abdobmen, seem to match pictures I found of DH on the internet. I have not found a cream of any kind that will make it go away.

The only other symptom I have is a weird one. About once or twice a year, my body *completely* flushes itself out. I spend about 1/2 hour in the bathroom just going and going and going (not diarrhea, but solid), until my intestines must be completely empty. It is accompanied by a cold sweat and a feeling of being completely drained. I've never known why this happens to me, and the symptoms disappear as quickly as they reappear. Would Celiac Disease do this?

I could really use some advice here. I don't know if I should have myself or her tested at all, and if so, which one of us should go first? Seems like one result would lend credence to another, meaning if one of us has it then the second one should definitely be tested. But what if the first one shows up negative?

Thanks for any advice,

Jennifer M.

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Of course I have no idea whether your daughter had it, but I CAN tell you that less than 50 percent of people with celiac disease have the diarrhea (this from the experts at the NIH conference this week). According to one expert, the very most common symptom is fatigue, which it sounds like your daughter does have.

If your skin condition is indeed DH, the only thing that helps other than going gluten-free is dapsone. ASnd if you have DH then you have or will have celiac disease. Does the spot look like a blister with clear fluid inside? Is it really, really itchy? Also, DH doesn't usually happen in just one place. You end up with it everywhere.

richard

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Some of yours and your daughter's symptoms sound like mine. I felt generally ill all the time prior to diagnosis, and like you I often spend alot of time in the bathroom and have always felt very drained afterwards. I was diagnsoed with celiac disease last summer, and Inflammatory Bowel Disease 2 months ago.

I would push for a celiac panel blood test for your daughter. The dr. you're currently seeing doesn't know much about celiac disease if they said it was "rare." Is this is a GI speciaist she's seeing? They should know better than that, too bad not many drs. do! Good luck and get tested.

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Richard and Gillian, thanks for your replies.

To answer your question, Richard, about my skin, the spots are round and crusty. Sometimes they itch and sometimes they do not. The majority of them are on my abdobmen, but I also have some spots on my legs. They are on both sides of my abdobmen and on both legs.

Gillian, I generally feel fine overall. It's only once or twice a year where I get the "flushing" symptom and then "drained" feeling. That's why it seems so weird to me and makes me question whether or not it is celiac disease. Seems like the symptoms would be all the time, not occasional with celiac disease, or occasional symptoms possible?

Thanks for piping in and giving me some guidance. I'll take all that I can get!

Jennifer M.

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I think you should be tested first because if you ddaughter is scared of needles that would be very hard for her. If you come back posotive then YES have her tested, but if you come back negative try to talk to a GI doctor because they seem to know more about celiac disease

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Jennifer,

You could avoid the whole needle thing by checking into the tests at Enterolab. Since you would be paying out of pocket anyhow, they are cheaper that the blood tests (at least if you want the blood tests done at a reputable lab that knows about Celiac Disease). You can find out more intormation at http://www.enterolab.com

They offer stool tests for gluten sensitivity (also called gluten intolerance), other food senstitivities like milk, eggs, yeast, and a gene test for Celiac Disease and gluten intolerance. And you do not need a doctors order to get the tests done. They are sent to your home, you do the test and send it back. A few weeks later you have your results. It is very simple and also very accurate. It is not yet accepted as a diagnostic tool by most GI doctors, but at least you will know if you and your daughter have a problem with gluten and can take necassary steps to improve your health.

God bless,

Mariann

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I think you should be tested first because if you ddaughter is scared of needles that would be very hard for her. If you come back posotive then YES have her tested, but if you come back negative try to talk to a GI doctor because they seem to know more about celiac disease

You should get tested, but it doesn't matter who gets tested first. If you have it, your daughter will have to get tested, anyway.....if you don't have it, your daughter should still get tested....after all, I have celiac disease, but my parents and brother don't. A GI doctor would just say: bloodwork, if that's positive, then biopsy....

Mariann's suggestion of Enterolab: a good and painless way to diagnose, but not one that the doctors like....you'd probably have to end up doing bloodwork, anyway....but it's a good idea to learn for yourself is you have it....it's just, that doctors might not like it.....

-celiac3270

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    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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