Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Desperate For Answers! New To The Rash "party"

Qb69

By Qb69
in Dermatitis Herpetiformis

Recommended Posts

Qb69 Newbie
Qb69
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Qb69 Newbie
Qb69
Posted
  • Author

This is within a span of 5 days from the initial mild bumps scattered across my body. To this full blow explosion.

http://i62.tinypic.com/x6igzc.webp

http://i61.tinypic.com/sdp8ir.webp

Any words of wisdom welcomed.

LauraTX Rising Star
LauraTX
Posted

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

cyclinglady Grand Master
cyclinglady
Posted

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!

Qb69 Newbie
Qb69
Posted
  • Author

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

squirmingitch Veteran
squirmingitch
Posted

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.

SMRI Collaborator
SMRI
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Qb69 Newbie
Qb69
Posted
  • Author

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.

SMRI Collaborator
SMRI
Posted

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?

Qb69 Newbie
Qb69
Posted
  • Author

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.

squirmingitch Veteran
squirmingitch
Posted

What bloods did they do?

GottaSki Mentor
GottaSki
Posted

Welcome QB!

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

GottaSki Mentor
GottaSki
Posted

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:

Open Original Shared Link

Hang in there :)

squirmingitch Veteran
squirmingitch
Posted

Excellent GottaSki! Excellent.

Qb69 Newbie
Qb69
Posted
  • Author

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

GottaSki Mentor
GottaSki
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748
    Rockette47
    Newest Member
    Rockette47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      Thank you all. 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.