Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Help! I Itch!

mookie03

By mookie03
in Dermatitis Herpetiformis

Recommended Posts

mookie03 Contributor
mookie03
Posted

OK so i have been gluten free for 10mos now and am feeling great (except for accidental glutenings which do occur but im getting better). My problems before were mainly GI problems and asthma. A few months after i went gluten-free, i developed a terrible rash behind each of my knees. Like literally identical rashes, and at least once a day i have uncontrollable itching. Totally uncontrollable. and when i scratch it hurts like hell but also continues to itch. This has been going on for several months now and im so fed up. Is a biopsy the only day to Dx DH? I so dont want to pay for any more tests... Anyone else have any ideas what else it can be? Thanks guys, u are all always so helpful...

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

My son, who is not a Celiac, got an itchy rash behind both knees--like the ones you described. The doctor said it was eczema and prescribed Elocon Cream. It worked well--the doctor also said (and this is if it's eczema) to keep it moisturized. Hope you get to the bottom of it--I know the itching has to be driving you crazy!

mookie03 Contributor
mookie03
Posted
  • Author

Thanks Patti! I have tried using Elidel but it doesnt seem to help. Does anything in particular make his flare up? I cant seem to find a pattern as to what is causing it, but its terrible. And all of the sudden it is skirt season :ph34r:

jerseyangel Proficient
jerseyangel
Posted

The only trigger seems to be summer (hot weather). Gee, I know Elidel is specificly for eczema--although I've never tried it. I don't know what else to suggest--I'm sure you've tried hydrocortisone cream--the OTC stuff. Have you had a doctor look at it?

Pegster Apprentice
Pegster
Posted

Have you experimented with cortizone creams or ointments? When my daughters get the behind the knees (and inside the elbows) rash, we mix our own "Princess Cream" which is Nivea mixed with hydrocortisone cream. A dermatologist first made this for us, and then we started mixing our own. I just squeeze out a bit of the cortisone and mix it in my hand with a big blob of Nivea. We still call it Princess cream, but the princesses are both in college now! :D

mookie03 Contributor
mookie03
Posted
  • Author

Its strange, b/c it got much worse as the weather got colder, not warmer as i would have expected (like it is very different than heat rash, which i get sometimes from exercising. I was hoping that once it got warmer outside it would get better, but it hasnt. And Elidel almost seems to make it worse!

I will have to try "princess cream" and see how that goes... i am going to the derm in 2 weeks, so hopefully i will get some answers! Till then, trying not to scratch...its so hard!!!

jljeje Newbie
jljeje
Posted
Its strange, b/c it got much worse as the weather got colder, not warmer as i would have expected (like it is very different than heat rash, which i get sometimes from exercising. I was hoping that once it got warmer outside it would get better, but it hasnt. And Elidel almost seems to make it worse!

I will have to try "princess cream" and see how that goes... i am going to the derm in 2 weeks, so hopefully i will get some answers! Till then, trying not to scratch...its so hard!!!

Hi,

I've tried all kinds of creams and ointments too & it's really expensive and time consuming to find one that works. For the last few years, I could use a product from Eucerin called Aquaphor and get pretty good results. It comes in a small tube and a 3.5oz jar (about the size of Ponds). The jar runs about $12, but lasts a very long time. But if you get a script from the doctor, you might try ApexiCon by Pharmaderm. It's the best I've ever used - it's a diflorasome diacetate emollient cream and with my insurance cost about $30. Also, my skin reacts to any weather change - cold or hot. Good Luck to you,

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

Celiac.com Sponsor (A8-M):


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. jamiet06
      - jamiet06 replied to jamiet06's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Duodenum biopsy result confusion

      Thank you Knitty kitty, no I haven't thought about that. I just assumed that because my biopsy showed no lymphocytosis, celiacs was off the table. Is it possible to have no lymphocytosis and still have celiacs?
    2. knitty kitty
      - knitty kitty replied to jamiet06's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Duodenum biopsy result confusion

      @jamiet06, Have you thought about getting a genetic test done? You have to have genes for Celiac Disease to develop. If you don't have any of the commonly known Celiac genes, you can look for another diagnosis. Genes don't change. You don't have to do a gluten challenge to test for genetic markers of Celiac Disease.
    3. knitty kitty
      - knitty kitty replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Confused About Results

      Yes, @Ginger38, there are other genes for Celiac besides the two most common HLA DQ 2 and HLA DQ 8. There are DQ 7 and DQ 9 to name a couple. There are others. I understand how frustrating the diagnosis journey can be. I had a difficult time getting diagnosed, too. But you're through that now! Focus on your recovery and healing. Try the...
    4. Ginger38
      - Ginger38 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Confused About Results

      Thank you! This is helpful and validating, which is nice. I am so tired of gastrointestinal issues and feeling poorly. Obviously my immune system is freaking out and seeing gluten as a foreign invader… and I feel like I’m just trying to doctor myself all the time but I did wonder if it was all indicative of pre celiac or something like that. I haven’t g...
    5. Ginger38
      - Ginger38 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Confused About Results

      Hi! Thank you, this is the most validating information I have had shared with me. I wondered if all this was indicative of pre-celiac or just celiac that hasn’t caused damage. It’s been a long road with all this and I am burnt out on dealing with it all. And I am beyond tired of gastrointestinal issues and feeling poorly. I have had major improvements on ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,316
    • Most Online (within 30 mins)
      7,748
    Jero5
    Newest Member
    Jero5
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • jamiet06
      Duodenum biopsy result confusion

      By jamiet06 · Posted

      Thank you Knitty kitty, no I haven't thought about that. I just assumed that because my biopsy showed no lymphocytosis, celiacs was off the table.  Is it possible to have no lymphocytosis and still have celiacs?
    • knitty kitty
      Duodenum biopsy result confusion

      By knitty kitty · Posted

      @jamiet06, Have you thought about getting a genetic test done?  You have to have genes for Celiac Disease to develop.  If you don't have any of the commonly known Celiac genes, you can look for another diagnosis.  Genes don't change.  You don't have to do a gluten challenge to test for genetic markers of Celiac Disease.
    • knitty kitty
      Confused About Results

      By knitty kitty · Posted

      Yes, @Ginger38,  there are other genes for Celiac besides the two most common HLA DQ 2 and HLA DQ 8.  There are DQ 7 and DQ 9 to name a couple.  There are others.   I understand how frustrating the diagnosis journey can be.  I had a difficult time getting diagnosed, too.  But you're through that now!  Focus on your recovery and healing.  Try the AIP diet to help calm your system down.  Try supplementing with a B Complex to boost your absorption and to help heal and repair.  Benfotiamine has been shown to promote intestinal healing.  Benfotiamine helps keep SIBO in check and so reduce bloating.   Keep us posted on your progress!  Best wishes!
    • Ginger38
      Confused About Results

      By Ginger38 · Posted

      Thank you! This is helpful and validating, which is nice.  I am so tired of gastrointestinal issues and feeling poorly. Obviously my immune system is freaking out and seeing gluten as a foreign invader… and I feel like I’m just trying to doctor myself all the time but I did wonder if it was all indicative of pre celiac or something like that.  I haven’t gotten straightened out mentally or physically since the 8 week gluten challenge. My stomach is a mess and I’m over it 
    • Ginger38
      Confused About Results

      By Ginger38 · Posted

      Hi! Thank you, this is the most validating information I have had shared with me. I wondered if all this was indicative of pre-celiac or just celiac that hasn’t caused damage. It’s been a long road with all this and I am burnt out on dealing with it all. And I am beyond tired of gastrointestinal issues and feeling poorly. I have had major improvements on a gluten free diet in the past and the antibodies decrease as well. Around the area where I live they don’t diagnose celiac without a positive biopsy. I asked my doc why I would have antibodies if it’s not celiac and he didn’t really have an Answer for that, which was frustrating. They only test for 2 genes, the most common I think. Aren’t there more than just 2? 
×
×
  • Create New...