Upset And In Need Of Advice/help!

[kaique]

Hi all,

I'm a recent newcomer to this forum. I posted the other day because I have an itchy, horrible rash all over my body and I wondered if maybe it was Dermatitis Herpetiformis, because I have a young daughter with Celiac Disease, confirmed by biopsy last year.) I also have night sweats, tingling in my left arm, anxiety, difficulty sleeping, and intermittent abdominal pain, and mild hypothyroidism. Anyway, here is my situation: I finally went and got a screen last week, and got the results today at my doctor's office. She said I wasn't a "true celiac", but that I had some antibodies. I said, wouldn't it be a good idea for me to have a biopsy done to confirm whether or not I actually have the disease? Since, after all, I have a first degree relative with the disease and generally do not feel well??? She looked at me as though I had two heads, and agreed to refer me to a GI, but I could tell she thought I was overreacting. AM I? I didn't think I was, since the tests did show that I have some antibodies. The worst part is that I probably won't get into the GI for about 6 months (unfortunately that is usually the case for referrals here in Canada - everything takes forever).

Anyway, I was just wondering what exactly it means to have "some antibodies" on the screen. Are the screens sometimes not definitive? I am so confused and frustrated. Any help would be appreciated.

[mushroom]

Most people will have SOME antibodies; each lab has a reference range for normal. For some the normal range is 5< , with borderline between 5 and 10, and everything over 10 positive, for example. So a result of 3 would be negative, a result of 9 would be high borderline, and a result of 32 a definite positive.

Rather than going to a GI, it might be more productive to go to a dermatologist and get the rash biopsied. They take a small sample of skin immediately adjacent to a a rash lesion, not of the rash itself, because the antibodies are found in the adjacent tissue. A positive biopsy for dermatitis herpetiformis is a diagnosis of celiac disease.

The disease expresses itself in different ways in different people. For some it is the intestinal tract, for others the skin, for some migraines, for some they have only neural symptoms. And the level of antibodies varies widely also. Many believe that "borderline" cases will become full-blown celiac eventually. So yes, it is all very confusing, and getting an actual celiac diagnosis is not easy, especially in Canada it seems, where specialist waiting times seem excruciating.

Your symptoms do sound suggestive of a celiac problem, especially if your daughter has it - does your rash blister and leave purple scars? Does it look like any of the rashes you have found in on-line links?

[Skylark]

You are NOT overreacting if you're covered with a rash and feeling sick. That's one heck of a rude doctor.

You'll have to call the doctor's office and ask for the antibody test results. Be sure to get the test name, your result, and the normal range for the test. You can post them here and we can help. Some of the blood tests are more definitive than others so it just depends on what she did. Many doctors will not diagnose celiac without a biopsy no matter what the antibody results. As mushroom says, you can get the DH rash biopsied for a diagnosis.

[kaique]

Thank you both very, very much for your replies. Yes, my rash blisters, crusts, and leaves purple scars. I should have mentioned that - it's what prompted me to get the tests done in the first place - I had been putting them off since my daughter was diagnosed but when I did a bit of research it seemed to match the DH descriptions. I'll definitely try to obtain the results of the tests. Thanks again, I appreciate your help!

[lucia]

Kaique,

Your instincts are completely right about this. The American medical profession doesn't understand celiac very well, and that leads to irresponsible behavior from doctors. According to the Celiac Center at Columbia University Medical School, it takes an average of 9 years in the U.S. for a celiac diagnosis from the time symptoms appear. It's interesting to note that this information is included in the "For Doctors" tab of their website (Open Original Shared Link).

Keep preserving and looking for a medical professional who will take your health seriously. You're doing the right thing for yourself! And we will be here for you to answer questions and offer our support

Best,

Lucia

P.S.: The Celiac Center website has more information that you may find useful. I suggest looking around a bit there.

[kaique]

Thanks so much Lucia! It's really encouraging to have all this support. I'm glad I found this board.