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Dh - Blood Showing Under Skin

pilgrimz

By pilgrimz
in Dermatitis Herpetiformis

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pilgrimz Newbie
pilgrimz
Posted

My dermatologist will not test me for DH and is not responsive to my questions so I am hoping to get some answers form someone in this forum. I had a major rash outbreak in January 2008, major itchy rash on the back, arms, scalp, also on legs, palms & soles of my feet. Nothing seemed to cure, prednisone and cortizone creams helped until stopped - then the rash always came back fast and bad. I gave up wheat products about eight weeks ago and that helped - but then I found other sources that I was getting gluten from - one of them was my Quaker Oats rice snacks - MSG. For about the past 3 weeks I am sure I am really at least 99% gluten free ( I do eat some cafeteria food ??? ) anyways most of my rash and itching is gone! even when i stop the cortizone cream. I am doing some major healing on my soles of feet and plams where the rash came up underneath my callouses. What I am concerned about is these blood like blisters, they are like blood blisters but almost flat and also little red blood marks mostly on my arms and top of hands ( the larger marks are deep purple in color) - they take a long time to clear up but they do get lighter but still new ones are occuring. Some of them are about as small as the head of a pin and others are twice the size of a pencil eraser. Has anyone else with DH had this occur to them?

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JoeB Apprentice
JoeB
Posted

First, if you have a doctor who doesn't listen to you or help solve your problem, change doctors. Second, find a good gastroenterologist who can test you for celiac and DH. Third, you can not be 99% gluten free. You have to remove all gluten from your diet, otherwise you are wasting your time.

I had DH when I was first diagnosed with celiac disease and I also had a number of small red spots that look like flat blood blisters that are the size of a pin. I still have some and I have been gluten free for more than 3 years. My dermatologist tells me this is an age issue and is not connected to DH or celiac.

pilgrimz Newbie
pilgrimz
Posted
  • Author

JoeB, Thanks for the info and advice, I am turning 58 so it may be age related and I am working on 100% certainty gluten-free - next week no cafeteria food. I am with an HMO so changing doctors is not easy.

ravenwoodglass Mentor
ravenwoodglass
Posted

It does sound like DH, I was covered in the blisters like you throughout my childhood so I sure can sympathize. My derms were clueless also. They told my Mom that I had poison ivy in my bloodstream. It can take a long time for those antibodies to leave the skin and as mentioned you have to be very strict. Make sure you check all topicals, lotions, shampoos, makeup, etc. Also check all supplements and script and OTC meds. I get the little red spots also. Now that I have been gluten-free I can see a direct relationship between being glutened and those spots. I also have livedo reticularis (lovely purple blotches) and that will be pronounced when glutened too. I think they are both linked to the inflammatory response in the blood from the gluten reaction.

pilgrimz Newbie
pilgrimz
Posted
  • Author

Dear R, Thank You for your thoughts - your story is very sad. I have had almost perfect health until this DH Rash started about January this year ... I hope your health continues to improve being gluten-free.

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