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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    Donna Shields
    Newest Member
    Donna Shields
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.