Frustration...

[Vanquish]

So as i sit here i am awaiting my official diagnosis of celiac disease through endoscopy on june 2nd. Yet, something still evades my perspective on celiac disease as a whole. You see i had a rash about 2 weeks ago that lasted for roughly 4 months prior to having it looked at. The rash turned out to be dermatitis herpetiformis, or that is what my dermatologist told me after doing a skin biopsy from my back and my upper buttock area. These rashes were sorta patterned on my elbows, knees, middle back and upper buttox. With no papules at first but later developing a few scattered water blisters. After the results came back from the biopsy and skin illumination test? i think it was, my derma had me get a blood test and a referral to a GI doc for further tests. I got the blood test done and it was determined that my IGa antibodies were high as well as some e named antibody. Its beginning to look more and more like celiac disease at this point, so i go on the gluten free diet just because by now the rashes are still there but are getting very itchy, almost exclusively at night. The rashes begin to clear up on the diet and as of now I do not have any visible rash on my body.

But this is what gets me, as of the gluten free diet about a week ago i have had 3 slipups and one major slipup-with no reaction what so ever, in fact my stool actually looked normal after ingesting gluten? My first slip up was an oreo blizzard, my second a few pretzels, and lastly my big slip up was a french dip sandwich. My family has absolutely no history of a gluten allergy going back 3 generations on either side of the family and are avid users of gluten products. And prior to my slipups i had suffered from constipation and mucusal stools but no diarrieh especially after ingesting the gluten. My GI doc also basically laughed at me when i said maybe my celiacs is triggered because of a allergy steriodal shot i get once a month for my allergies. He just said basically that celiacs can appear at any time in anyones life (im 20). So hmm anyone else have a similar experience like this? Am i a true celiac or just minor gluten intolerant? Since i really have no family history of celiac disease and I have no problem taking in gluten at least every once in awhile.

[jerseyangel]

Hi and welcome to the board

If you have a diagnosis of DH, you also have a diagnosis of Celiac. You actually don't need any further testing--you have it.

It's important for you to stick to the diet--even without obvious symptoms, you will be doing damage to your intestine.

I'm the only Celiac (known) in my family, too.

[ksymonds84]

Hello and welcome to the board! A biopsy diagnosis of the HD rash is a definate celiac diagnoses. Not everyone has digestive symptoms or any outward symptoms when they eat gluten; however the damage is still being done internally all the same. My brother inlaw was diagnosed the same way as you with no one else in the family (yet) having celiac or gluten sensitivities. He now follows a strict gluten free diet and never gets the rashes unless accidentally glutened. You've came to a great place to learn about celiac.

[kenlove]

No History in my family either, going back 3 generations but I got it at age 55 full on celiac.

There are many theories why this happens but I tend to think it was the modified wheats from the late 60s and my generation being the first to have fast foods and all the chemical additives from the post WWll era.

I've not had any intentional slip-ups but accidents which depending on how, causes either severe gut pain or dh.

The how being breathing in flour or eating something with unknown gluten or from cross contamination.

There are hundreds of symptoms that affect us all differently. Personally I wouldn't take chances. It took them 6 months to figure me out and 3 hospital stays being treated for everything from heart problems to Parkinsons. When I went gluten-free it all went away.

Good luck

ken

  Vanquish said:

So as i sit here i am awaiting my official diagnosis of celiac disease through endoscopy on june 2nd. Yet, something still evades my perspective on celiac disease as a whole. You see i had a rash about 2 weeks ago that lasted for roughly 4 months prior to having it looked at. The rash turned out to be dermatitis herpetiformis, or that is what my dermatologist told me after doing a skin biopsy from my back and my upper buttock area. These rashes were sorta patterned on my elbows, knees, middle back and upper buttox. With no papules at first but later developing a few scattered water blisters. After the results came back from the biopsy and skin illumination test? i think it was, my derma had me get a blood test and a referral to a GI doc for further tests. I got the blood test done and it was determined that my IGa antibodies were high as well as some e named antibody. Its beginning to look more and more like celiac disease at this point, so i go on the gluten free diet just because by now the rashes are still there but are getting very itchy, almost exclusively at night. The rashes begin to clear up on the diet and as of now I do not have any visible rash on my body.

But this is what gets me, as of the gluten free diet about a week ago i have had 3 slipups and one major slipup-with no reaction what so ever, in fact my stool actually looked normal after ingesting gluten? My first slip up was an oreo blizzard, my second a few pretzels, and lastly my big slip up was a french dip sandwich. My family has absolutely no history of a gluten allergy going back 3 generations on either side of the family and are avid users of gluten products. And prior to my slipups i had suffered from constipation and mucusal stools but no diarrieh especially after ingesting the gluten. My GI doc also basically laughed at me when i said maybe my celiacs is triggered because of a allergy steriodal shot i get once a month for my allergies. He just said basically that celiacs can appear at any time in anyones life (im 20). So hmm anyone else have a similar experience like this? Am i a true celiac or just minor gluten intolerant? Since i really have no family history of celiac disease and I have no problem taking in gluten at least every once in awhile.

[Vanquish]

Thank you for the welcome and replies. Initially my biopsy wasn't DH but then i was told later it was. What caused the delay in my diagnosis im not sure. But im sorta glad i understand whats going on now. It just stinks cause i was preparing for an officer career in the military but it appears that celiacs will now can that idea. Did any of you guys have a diet high in pastas/breads? I am a big eater and i used to eat gluten at least every meal, but so did my parents and they never had problems. Hmm maybe that combined with stress and shoulder surgery put me in the trigger zone.