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

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,659
    • Most Online (within 30 mins)
      7,748
    Dr. Gunn
    Newest Member
    Dr. Gunn
    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

    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
×
×
  • 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.