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Negative Coeliac Biopsy But Possible Dh - Help

tiggy400

By tiggy400
in Dermatitis Herpetiformis

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tiggy400 Newbie
tiggy400
Posted

Hi i have just had a negative stomach biopsy for Coeliac. I am awaiting a private consultation for DH which is on the 15th of Dec. I have been getting a strange rash on my elbow for years but it was never present when i went docs and he just said it sounded like a Herpes type rash but he needed to see it. To cut a long story short i also have stomach symptoms ie wind, mainly constipation but bouts of runs now and again. Non stomach symptoms are heachaches, extreme tiredness, lethargy and bouts of temper lack of patience.

My Gastro Doc has said he does not want to see me now till Feb. I have been gluten free for just over 3 weeks since i had the biopsy, i feel so much better, i lost 1/2 stone straight away, i am "awake" and not a nice thing to say but i go to the toilet once a day!! I cant remember when i did that!

The thing that i am not sure about is the DH, i only get it on the left elbow, small circles of red raised bumps that then blister and crust over, i usually pop the blisters so they go quicker.....not nice i know. This itches/burns until the blisters appear. My GP thought it was shingles but i can get this maybe 2/3/4 times a year.......can you get it so infrequent? And so mild and only on one side? I have had blisters on the arch of my foot but i dont know if this was the same thing as it did not appear to be "hard" underneath, but these are even rarer. I did notice though that before my biopsy i upped by bread intake and i itched all over, particularly my head but no other blisters or anything anywhere.

When having a skin biopsy does the rash have to be present, i know they dont take it from the rash but should i be eating wheat again before my skin biopsy? I really feel fed up and dont know what to do next.

I will try to add pics, please let me know if anyone else has had this problem.

Ps how do i add a pic lol!!

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ravenwoodglass Mentor
ravenwoodglass
Posted

You do need an active lesion for them to be able to biopsy the area next to. The antibodies are found in the adjacent skin not the lesion itself. It would be unusual for DH to only appear on one side but not totally unheard of. Your description of the lesions does sound like DH, when they heal do they leave a purplish scar that takes a very long time to fade? DH has that type of scarring.

tiggy400 Newbie
tiggy400
Posted
  • Author
You do need an active lesion for them to be able to biopsy the area next to. The antibodies are found in the adjacent skin not the lesion itself. It would be unusual for DH to only appear on one side but not totally unheard of. Your description of the lesions does sound like DH, when they heal do they leave a purplish scar that takes a very long time to fade? DH has that type of scarring.

Hi Ravenwoodglass,

i would say they are more of a redish/purple mark after, which eventually turns white, if i could add a photo i could show you when they are active. I had pasta and bread last night for the first time in 3 weeks so will see what happens next, although i think mine is very mild.

thank you for your reply

ang1e0251 Contributor
ang1e0251
Posted

I get 2 different rashes when glutened badly, that's initially what made me think celiac. One rash started on one side and later the other side matched it. The other rash, the one with the blisters, I only get on one side. I sometimes have those on my scalp also.

tiggy400 Newbie
tiggy400
Posted
  • Author
I get 2 different rashes when glutened badly, that's initially what made me think celiac. One rash started on one side and later the other side matched it. The other rash, the one with the blisters, I only get on one side. I sometimes have those on my scalp also.

Hi

well to update i had homemade Lasagne and Garlic Bread saturday night.......not the gluten free stuff i have been making but the real thing......was lovely!!

Except i had a really upset stomach the next morning, had a headache all afternoon and i could not stay awake today at work and feel pretty tired and low...........so i am so confused i dont know what to do.

Does everyone have the rash all the time or like me only about 3/4 times a year which is going to make a biopsy hard to get?

mushroom Proficient
mushroom
Posted
Does everyone have the rash all the time or like me only about 3/4 times a year which is going to make a biopsy hard to get?

My DH gets gastro symptoms all the time with gluten, but has only had DH (I am sure that is what it was) once on one side of his forehead. His symptoms were just as you describe them. It was enough to make a believer of him not to cheat.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi

well to update i had homemade Lasagne and Garlic Bread saturday night.......not the gluten free stuff i have been making but the real thing......was lovely!!

Except i had a really upset stomach the next morning, had a headache all afternoon and i could not stay awake today at work and feel pretty tired and low...........so i am so confused i dont know what to do.

Does everyone have the rash all the time or like me only about 3/4 times a year which is going to make a biopsy hard to get?

You just did a gluten challenge and the results were positive. You may find you have a new lesion at some point in the next week.

The rash with DH and the frequency of outbreaks can vary even within one persons experience. When I was a child I would have the rash all over my legs and arms for months at a time, the only time it would heal was with heavy doses of prednisone and then it would reappear a couple months later. In my teens it was mostly on my face and in the crooks of my elbows and knees and would be present more during the warmer months. In adulthood the lesions moved to my scalp, jawline and across my shoulders with rare outbreaks on my fingers. I did almost always have a lesion of some description.

I would reccommend making an appointment with a derm and talking to them. They should be willing to fix it so that when you have an active lesion you can come in immediately to have the area adjacent biopsied.

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