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worriedmom

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worriedmom Newbie
worriedmom
Posted

Hi all,

I'm looking for insight. My daughter developed a purple tint to both knees and both elbows and what looked like spider bites that itched like mad. We thought they were spider bites. Over a month, the rash became more intense, spreading down arms and legs and across hips on both sides, the longer she has it the faster it spreads (slow at first, then quickly). She describes the itching as being "under her skin, like it was in her bones" rather than related to the actual sores, and it is worse in areas where she hasn't yet developed sores.. We went to Dr. every other day the last week to try to get relief, she actually raked the skin off of her lower leg! Finally 2 spots were biopsied and we are waiting for results. In the meantime, she began glutton free diet. Within a few days, spread of rash seemed to slow a little bit and itching seamed a little less intense. Is this possible?? Interesting, her brother has Ulcerative Colitis, a different autoimmune intestinal condition.

Like the last poster, she is allergic to Sulfa. She also just had vaccines (Yellow Fever and Typhoid) in preparation for travel. Can there be a link? Does this sound like DH symptoms?? She is a senior in HS and a little late for juvenile diagnosis.

Worried...

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angel-jd1 Community Regular
angel-jd1
Posted
Hi all,

I'm looking for insight. My daughter developed a purple tint to both knees and both elbows and what looked like spider bites that itched like mad. We thought they were spider bites. Over a month, the rash became more intense, spreading down arms and legs and across hips on both sides, the longer she has it the faster it spreads (slow at first, then quickly). She describes the itching as being "under her skin, like it was in her bones" rather than related to the actual sores, and it is worse in areas where she hasn't yet developed sores.. We went to Dr. every other day the last week to try to get relief, she actually raked the skin off of her lower leg! Finally 2 spots were biopsied and we are waiting for results. In the meantime, she began glutton free diet. Within a few days, spread of rash seemed to slow a little bit and itching seamed a little less intense. Is this possible?? Interesting, her brother has Ulcerative Colitis, a different autoimmune intestinal condition.

Like the last poster, she is allergic to Sulfa. She also just had vaccines (Yellow Fever and Typhoid) in preparation for travel. Can there be a link? Does this sound like DH symptoms?? She is a senior in HS and a little late for juvenile diagnosis.

Worried...

I don't have DH and really don't know a WHOLE lot of info about it. I just noticed your post that said you hadn't recieved any responses to this thread........I thought I would come and offer my 2cents ;)

The doctor did the right thing by doing the biopsy of her skin. That will help to determine if the rash is indeed DH. If it comes back as DH your daughter needs to follow the gluten free diet. Some people with celiac have dh and others don't. I am one that does not have it.

If your daughter gets a positive diagnosis you should really look into testing your son also. All first degree relatives should be tested.

Good luck with everything, welcome to the board and feel free to post any questions that you may have!!

-Jessica :rolleyes:

worriedmom Newbie
worriedmom
Posted
  • Author

Thank you Jessica!!! I was wondering if anyone was out there... We were hoping to get the results today but the pathologist couldn't do it in time. It is a holiday weekend so now we have to wait till Tuesday. Does anyone know how long it takes the diet to alleviate the worst of the itching?

Belinda Meeker Apprentice
Belinda Meeker
Posted
Thank you Jessica!!! I was wondering if anyone was out there... We were hoping to get the results today but the pathologist couldn't do it in time. It is a holiday weekend so now we have to wait till Tuesday. Does anyone know how long it takes the diet to alleviate the worst of the itching?

Hi I'am not to old here myself with the site...

but we do have DH and if u do the gluten free diet faithfully even watch for cross contamination she should get the rash to subside , but have recently heard it can take up to 2 years for the rash to go completely in remision. It does go away in time after u have been on the diet (i know did the diet true to the core) but had to go back to gluten for more testing. We have a 17 year old son which tested post. for Celiac's Sprue 2 years ago and he too has DH....

I also know by being on this board ,ppl have told me if u have DH then more then likey u have celiac disease .

I know wht it is like to wait for Dxd, so I feel for you and ur family (it is no fun doing gluten when it makes u feel crappy) I wish they had a test for this like they do for testing sugar when u r pregnant <_<

Well god luck to u all !

If u have any ?'s at all feel free to pm me :)

I will answer them the best I can, if not I will ask someone who can .

Belinda

worriedmom Newbie
worriedmom
Posted
  • Author

Belinda,

Thanks. Sorry that you are going through this also, and are dealing with your son having it. My D. is supposed to be going out of the country in 3 weeks for the summer and then to college. I haven't contacted either program yet as don't want to jump the gun, but we are all worried that her summer may have to be canceled if she can't eat gluten free there.

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
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      High DGP-A with normal IGA

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    • knitty kitty
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