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Member Since 06 Oct 2012
Offline Last Active Private

Posts I've Made

In Topic: Extraintestinal Manifestations

07 October 2012 - 04:27 PM

[quote name='squirmingitch' timestamp='1349653413' post='828102']
DH presents in many forms; not just as water blisters. And it presents anywhere on the body. I think it really throws people that almost all of the medical info. out there says elbows, buttocks, knees & so forth because we who have it know it can present any place on the body. My husbands does not present with the classic water blister always mentioned in the med info. yet his is undoubtedly dh & like many on this board report theirs to be. And my husbands dh tends to not itch as much as mine but it burns far more & stings quite a lot.
This is excellent info. on all the differing presentations.

It is possible you could get a dx by getting a dh biopsy but you need an active lesion & the biopsy must be taken from a clear area ADJACENT to an active lesion. Repeat --- this is NOT ON a lesion but adjacent to one. A dx of dh IS a dx of celiac disease.

You should check out the doctors forum to see if you can find a derm or GI or both near you who is well versed in celiac &/or dh. Use the search box on the site to put in the town, cities or state you would be looking in.

Thanks, squirmingitch! I checked out that first link you provided. When I first presented w/ the leg rash, my physician's first inkling was shingles, but after she learned I'd never had chicken pox, she prescribed me an antiviral for herpes (which didn't phase it). While I know it can still be anything but DH, I am going to pursue getting the celiac panel this week. I feel that I have too many symptoms/diagnoses that point to Celiac disease or at the very least gluten sensitivity. I have nothing to lose! Thank you again! :)

In Topic: Sick And Suspicious

07 October 2012 - 03:08 PM

Thank you, ladies or gentleman?! :unsure: I think I will pursue getting the full panel of blood work this week! Be blessed! :D

In Topic: Could It Be Celiac?

07 October 2012 - 03:02 PM

Well so far he's only run a comprehensive metabolic panel and the fast blood glucose. I'm waiting to get a copy of the results, but I'm pretty sure that he hasn't even tested for celiac yet. It took me a long time for him to do tests, and when my blood glucose ones came back normal, I think it convinced him it's just me being too sensitive or picky. I'm going back in a couple weeks so I'll ask him about celiac, I just don't know if he'll even believe me.
However, at a previous appointment he was considering sending me to a gastroenterologist- would they know more about celiac?? I can only hope I'd have more luck with them.

At this point, even my boyfriend and family are getting annoyed with my constant tiredness. When they thought it might be diabetes, I was almost relieved- at least THEN I'd have a diagnosis and would know it's not all in my head.

Also, I've thankfully not often experienced the D side of IBS.

Also, are the tests they do for celiac all blood tests (except the endoscopy, of course) ? My doc doesn't mind sending me for blood tests- as evidenced by the repetition of glucose tests.

You had mentioned in your first post that your physician diagnosed you with IBS based on a blood test, so I had assumed it was a Celiac test. I'm sorry for the confusion. Wonder what test it was? Apparently not all gastroenterologists are aware of Celiac Disease. Mine certainly wasn't. He never even mentioned the possibility of Celiac Disease. No blood work or biopsy. I was diagnosed on the basis of a clear endoscopy and colonoscopy, but he didn't take any tissue samples during my upper scope, so how can I know for sure? I guess that's why a lot of people are initially misdiagnosed with IBS. I personally believe IBS is a symptom, not an acceptable diagnosis. As a general rule, gastroenterologists specialize in diseases of the digestive tract. Maybe you'll get a good one! If your TSH was w/in normal range, please consider getting a thyroid antibody test too. That is, if that hasn't been done already. It can show you if you are producing antibodies against your thyroid, which could be causing your exhaustion and hair loss. Of course, celiac w/ its associated vitamin deficiences can probably cause these symptoms. I've heard others on here refer to IBS as I Be Stumped, which I absolutely love! I like to refer to it as Idiotic Bull S***! :lol:

In Topic: Extraintestinal Manifestations

07 October 2012 - 02:41 PM

I had to just drop iodized salt and take a vitamin without it. Some, like Squirmy have to drop all foods with iodine. You can have DH and other skin conditions. The itchy rash you speak of does sound like DH. Here is a helpful site for info on DH and the testing that needs to be done by a derm to diagnose it. It is important that the doctor be looking for DH as special testing in the lab needs to be done.

Do stay on gluten until you are done with a celiac related testing and then try going gluten free to see if it helps even if the tests are negative.
I did have symptoms, including DH come and go for years before my problems became a daily happening.
Hope you are feeling better soon.

Thank you for the link and additional information!

In Topic: Extraintestinal Manifestations

07 October 2012 - 12:27 PM

That the rash fades to purple is one of the trademarks of DH. And if it does that it generally leaves a scar, in my experience ( from looking at my husband's --I have not had it)

Thank you for your input, mushroom! At about the same time that I developed the singular lesions on my buttocks (about a year ago),
I developed sublingual gland swelling as well as a bump on the way-back of my tongue. I went to my physician. She gave me a referral to an ENT and had the nurse practitioner give me an injection into my buttocks. The nurse asked me if I had a staph infection. I had just acquired the lesion, so I told her I didn't know. I know that these lesions on my booty could be something other than DH. I have now had these lesions for a year. They come up one by one, last for several weeks, and finally fade. I do have a slight purple mark where they used to be. I'm just wondering if a staph infection would spontaneously disappear without the aid of something? The rash on my inner thighs has been there for three years and it itches like crazy when it's active. I was given an antiviral and an antifungal, but nothing touches it. The physician ruled out scabies by visual examination only. I would assume it would've spread by now (three years later) and surely someone else in my household would've contacted it had it been something like scabies. I don't know. I could most definitely be wrong. I'm sorry your husband has DH.

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