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glutenmommy

Member Since 09 Jul 2009
Offline Last Active Dec 30 2009 07:33 PM
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Topics I've Started

Sooo Confused About This Rash....

21 December 2009 - 04:22 AM

This fall I had all the testing done -- EMA (Immunoglobulin A anti-endomysium antibodies) AGA (IgA anti-gliadin antibodies) DGP (Deamidated gliadin peptide antibody) tTGA (IgA anti-tissue transglutaminase) as well as upper endoscopy. Everything came back negative. Not even a trace of positive in the bloodwork.

Every time I eat gluten (and I mean EVERY time) I break out in hives, welts, and a fiery looking rash. It is ALWAYS symmetrical -- on both sides of my stomach, both feet, behind both knees, both sides of my bum, both sides of my neck, etc. Not all of those places at the same time but always symmetrical. The rash is never blistery or weeping, but very itchy and painful.

Could this still be dh? Or is it just an eczema reaction to gluten? And either way, how can this be when all the blood results are absolutely normal?

I know I need to listen to my body and I do follow a gluten-free diet. I just wonder how one can be so darn sensitive with not a shred of medical evidence to back it up.

How Many People Here Had Negative Bloodwork, Negative Biopsy But Still Respond To Glute...

13 October 2009 - 11:09 AM

All of my bloodwork came back normal on the complete celiac panel. I'm still waiting on the results of my endoscopy done last Friday, but my doctor said he didn't see any evidence of villi damage during the procedure. I haven't had ANY gluten since last Wednesday; ALL of my diarrhea is gone (usually 7-10 times per day! yuck), ALL of the gas and bloating is gone; ALL of the heartburn is gone!!! I have lost nearly 5 lbs of bloating and intracellular fluid. I already knew I would respond to the diet because I did an elimination diet earlier this summer.

It doesn't really matter to me whether I have a diagnosis of "celiac" or not. I'm just wondering how many of you are like me: negative all the way around but still respond beautifully to the diet. (Of course, I suppose my endo could still come back positive -- I'll post as soon as I get the results)

Thanks!

For Everyone Who Is A "self-diagnosed" Celiac...

25 August 2009 - 07:52 AM

...I'm just wondering, after reading Dr. Stephen Wangen's book Healthier Without Wheat, how you all arrived at the diagnosis of celiac. Celiac disease is a very specific subset of a larger intolerance known as Gluten Intolerance. Celiac is only diagnosed when you have villous atrophy; however many more millions of people have Non-celiac Gluten Intolerance which can produce symptoms that feel just as debilitating as celiac. In other words, being gluten-intolerant is completely possible without having celiac disease. I'm not trying to split hairs, just wondering how you all arrived so definitively at your diagnosis of celiac. Only 1% of the population has celiac disease while an estimated 20-30% have non-celiac gluten intolerance.

By the way, the reason many of the bloodtests come back with false negatives is because you have to have total villous atrophy (or something darn close to that!) before the antibodies can escape into the bloodstream (which further bolsters Wangen's claim that many people have non-celiac gluten intolerance rather than celiac disease and that's why it is so often missed in labwork). It doesn't mean your symptoms are any less real or devastating; just means that you don't have celiac disease (villous atrophy) per se.

I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance. I don't think the diagnosis of non-celiac gluten intolerance is any less "legitimate" than celiac disease, so I'm not sure why so many seem to be searching for that label. Clearly doctors need to be better educated about the serious side-effects gluten can cause, whether celiac or non-celiac gluten intolerant. Just because you may not have celiac doesn't mean the doctor should dismiss you or discount your symptoms. I highly recommend Healthier Without Wheat for anyone who is interested in an in-depth analysis of this.

Just thinking outloud....

Does Your Dh Ever Look Like Poison Ivy?

22 July 2009 - 05:29 AM

Can DH be mistaken for poison ivy? Or does it have a distinctly different presentation? For years, I've gotten a rash on my neck/face (usually on both sides). I've always just assumed it was poison ivy because we do have it growing in our yard. Suspiciously though, it seems like I would get it in other places if it truly was poison ivy, like on my hands and arms and THEN spreading to my face. Any thoughts on this? Any of you ever been told it's poison ivy? Just trying to connect a few dots here...

Thanks! :)

Is It Possible To Get Dh In Genital Area?

15 July 2009 - 03:21 AM

Every time (and I mean EVERY!) I eat gluten, I break out in my anal/vaginal area (sorry -- TMI!!) :rolleyes: with small clear, watery blisters that itch worse than poison ivy. It is the most painful rash I have ever experienced. I nearly go through the roof when I'm showering and the soap or water touches it, that's how painful it is. It only happens when I've been glutened, and usually clears up within a couple of days if I am careful and avoid reexposure to more gluten.

It took me years to figure out this was related to gluten. I kept going to the gynecologist trying to figure out what was going on -- he ruled out hemmorhoids, yeast infection, bacterial infection, UTI, STD, etc. He prescribed a steroid cream which does help but I can only use it sparingly as it is a potent mixture. Once I did the elimination diet and connected the rash to gluten, I rarely even need the steroid cream now.

I know this doesn't sound like the classic case of DH because it is not occurring in the usual areas. But can it occur anywhere? I'm trying to decide if I should have this rash biopsied. And who does the biopsy -- a dermatologist or gastroenterologist? I'm afraid I will have a hard time convincing any doctor to do this since it is not a "classic" presentation.

By the way, I've been gluten-free for more than 2 months now so I don't think any blood work or intestinal biopsy would be accurate at this point...

Thanks!