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

Dh And My Sanity!


SarahCC

Recommended Posts

SarahCC Rookie

Hi, I guess a little background since this is my first post EVER on any thing like this. I was diagnosed with Celiac Disease in 2005 and never really stuck to the diet until about a few months ago. About a year ago I started getting these rashes on the creases of my elbows and on my thighs. I didn't think about it, but long story short, it turned out to be DH. I have been going to the dr. and at first he gave me tetracycline and I had an allergic reaction to that, my neck swelled up and was extremely itchy to the point of pain. Then the Dr. gave me Dapsone only 50mg a day and two days ago the left side of my neck swelled a little, not to the level that it did before but is stil itchy and painful. My legs are covered in DH spots and rashes. I can't take this stupid itching anymore, I have been staying on a strict gluten free diet for about two months and it has only gotten worse. I was also perscribed a lotion triamcinolone acetonide and its pretty much worthless.I have tried almost every anit itch creame on the market and nothing is helping. I am about to lose my mind!! HA! Someone please give some advice or something. Thank you so much. By the way I am so excited that I found this site, I knew I wasnt the only person with this but i don't know anyone else and this place makes me feel not so alone in dealing with this! Thanks again.


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



Celiac.com Sponsor (A8-M):



wowzer Community Regular

I feel for you. Have you checked all your cosmetics, soaps, detergents, lotions etc.? I was using this Oil of Olay body wash only to find out it contained gluten. It was making me worse. I wish you luck. Also check your medications to make sure they are gluten free.

zagadka Newbie

aww, that sucks.

i would suggest switching to all natural cosmetics and toiletries, but be careful! i just realized last night that i've been using Aveda for years and have had a very itchy scalp/ neck/ face on and offf...looked at the ingredients- BOOM... "wheat amino acids"...i'm totally bummed. i love aveda.

i googled "gluten free shampoo" last night and there are a few companies out there that manufacture many toiletries. good luck!

SarahCC Rookie

You know that never even occured to me. I thought all I had to worry about was ingesting gluten! Great....lol Thanks for letting me know. Me and my legs appreciate it! :)

  • 2 weeks later...
jesse Newbie

what are some shampoos that are gluten free?

also, what are some detergents that are gluten free?

curious,

jdog

zkat Apprentice

Aubry Organics makes gluten free shampoos and conditioners. The conditioner is very heavy and hard to rinse out of my hair, so I switched to Desert Essence-they have an entire line of gluten free products, including lotions, shampoo, conditioners and other styling products. They smell very yummy too.

For soaps, I just use oatmeal soap, I can't think of the brand, but it works well. I use it to wash my face every day and it works better than the expensive stuff I used to use.

I know there are some mainstream products that are gluten free, but I prefer the all natuarl products.

glutenfreenew Rookie

i have major dh problems as well. I find that all of toms of maine products are wonderful and also i find that neutragena works well as far as make up , face wash and shampoo and conditioner. you can also order a catalog from csa at 1-877-csa-4csa. its about 30 dollars and will give you an entire book that gives you gluten free items from health care to any type of food you can think up. totally worth it :lol: try to watch labels for anything with wheat in them and avoid. hope this was helpful . feel free to pm if you want any more help, i have been dealing with this for about a year and it is so frustrating :( as for detergents i am ok with arm and hammer baking soda detergent that is perfume free and bounce dye free and perfume free dryer sheets.


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



Celiac.com Sponsor (A8-M):



casnco Enthusiast
Hi, I guess a little background since this is my first post EVER on any thing like this. I was diagnosed with Celiac Disease in 2005 and never really stuck to the diet until about a few months ago. About a year ago I started getting these rashes on the creases of my elbows and on my thighs. I didn't think about it, but long story short, it turned out to be DH. I have been going to the dr. and at first he gave me tetracycline and I had an allergic reaction to that, my neck swelled up and was extremely itchy to the point of pain. Then the Dr. gave me Dapsone only 50mg a day and two days ago the left side of my neck swelled a little, not to the level that it did before but is stil itchy and painful. My legs are covered in DH spots and rashes. I can't take this stupid itching anymore, I have been staying on a strict gluten free diet for about two months and it has only gotten worse. I was also perscribed a lotion triamcinolone acetonide and its pretty much worthless.I have tried almost every anit itch creame on the market and nothing is helping. I am about to lose my mind!! HA! Someone please give some advice or something. Thank you so much. By the way I am so excited that I found this site, I knew I wasnt the only person with this but i don't know anyone else and this place makes me feel not so alone in dealing with this! Thanks again.

Sorry you are so miserable. I can totally relate. I am seeing an herbalist today because my DH is out of control. I tried all of the meds you mentioned and have had allergic reactions. I use CALMOSEPTINE barrier cream for my DH. You can order it through your pharmasist.(sp) or go to www.calmoseptine.com Good luck. keep us posted on your successes with DH

  • 3 weeks later...
Drew Newbie

I have DH. I was mystified by continued sores even after going gluten-free. It turns out that also avoiding Corn, Soy, and Cow Dairy makes my skin go clear finally ! Also, no chocolate and no coffee. I think its worth a try because DH is a nightmare. Good Luck

  • 2 weeks later...
ariesmama Newbie
I feel for you. Have you checked all your cosmetics, soaps, detergents, lotions etc.? I was using this Oil of Olay body wash only to find out it contained gluten. It was making me worse. I wish you luck. Also check your medications to make sure they are gluten free.

I never knew that soaps could contain gluten in them...Myself, I swear by Olay moisturinse, it's a lotion that you spread on your skin, then rinse off, and it stopped the itching in my arms and legs the first time I used it...I don't know if it has any gluten in it, but it sure works for me, I won't be without it now...

wowzer Community Regular

I would check the ingredients on your Oil of Olay. I was using their hypoallergenic body wash with aloe. Turns out it had gluten in it. It did feel comforting when I showered, but my rashes just kept getting worse. It took me awhile to figure out that it was causing me a lot of problems.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,636
    • Most Online (within 30 mins)
      7,748

    Tiana
    Newest Member
    Tiana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
×
×
  • 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.