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Qb69

Desperate For Answers! New To The Rash "party"

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Hello everyone,

I have been on a nonstop search for answers since strange bumps/blisters began forming on my fingers and feet, in between the fingers and on top of the foot. Then fast forward a few days later, bumps begin to form on my two elbows. Now I am covered head to toe with a nasty super itchy, keep me up all night, never can sleep rash.

I found this site and open to any and all answers. Will be uploading pictures momentary...

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Have you seen a doctor yet?  That should always be the first step.


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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I am not a DH expert (since I have not experienced it), but previous posters have described it as being insanely itchy. So, it could be DH. Cold compresses can help. Do not take steroids (even topically) and search within this forum for proper testing procedures you can share with your doctor. It is tricky to get a skin biopsy. Continue to consume gluten until all testing has been completed.

I hope you find your answers!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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Did you see a dermatologist? Do that & insist they do a dh biopsy. Make sure they do it right. Read threads on here for info. on how the dh biopsy is correctly performed, 

Meanwhile, try limiting iodine intake in your diet. Iodine for some reason is like pouring gas on a fire for most of us with dh.

Google Thyca.org for a low iodine diet.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Saw a doctor and he has no clue. The rash keeps slowly progressing and spreading, it has almost consumed my whole body. :(

 

I'd call around and find a dermatologist that is experienced with DH and go there.  Make sure they know you are having major acute symptoms so they get you in faster!!  Do you have a major teaching hospital/clinic anywhere near you--that might be the best place to start.

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Saw several drs and derms in the past weeks. All claim its contact dermatitis and that it will just go away. Its just getting worse as the days progress. But the itch has really calmed down. Still itchy but I can resist the itch now. In the San Diego area, major medical research hospital UCSD is in town.

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Have you changed your detergent, soap or anything that would bring this on?  I'm sure they asked you all of that but something is causing this.  It looks miserable. How about a new sun screen or anything like that?

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Yeah, drs said contact dermatitis. But the fact that every day I wake up and its spreads to a new spot or grows in size makes me think its internal. Also given that its been so long makes me feel its a bigger issue than contact. :/ but im waiting on blood tests.

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What bloods did they do?


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Welcome QB!

Great to see you Squirmy...carry on ;)


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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Saw several drs and derms in the past weeks. All claim its contact dermatitis and that it will just go away. Its just getting worse as the days progress. But the itch has really calmed down. Still itchy but I can resist the itch now. In the San Diego area, major medical research hospital UCSD is in town.

Well...it helps when I read the entire thread. I live in San Diego and know UCSD very well.

You want to see Dr. Sheila Crowe, the director of UCSDs celiac center. Ask to speak with her assistant or advice nurse. The normal receptionist does not understand the need to fast forward possible DH biopsy.

If you run into the usual "next appt is in three months" ... Send me a PM and I'll see what I can do.

Edited to add:

http://doctors.ucsd.edu/mobile/Details/12058?index=1&specialties=16

Hang in there :)


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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Excellent GottaSki! Excellent.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thanks for all the great advice!! I go to the dr tomorrow to review blood work, and will go from there. Thanks all!!

Great.

Always ask for written or electronic copies of testing.

It can help you now....and trust me, it will help in your future health needs.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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