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

By SarahCC
in Dermatitis Herpetiformis

Recommended Posts

SarahCC Rookie
SarahCC
Posted

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
wowzer
Posted

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
zagadka
Posted

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
SarahCC
Posted
  • Author

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
jesse
Posted

what are some shampoos that are gluten free?

also, what are some detergents that are gluten free?

curious,

jdog

zkat Apprentice
zkat
Posted

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
glutenfreenew
Posted

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
casnco
Posted
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
Drew
Posted

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
ariesmama
Posted
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
wowzer
Posted

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.

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. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    2. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    3. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
    4. Peace lily
      - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    5. Teaganwhowantsanexpltion
      - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,237
    • Most Online (within 30 mins)
      7,748
    Nancy MacManus
    Newest Member
    Nancy MacManus
    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

    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      A little about me and my celiac disease

      By Teaganwhowantsanexpltion · Posted

      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
×
×
  • 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.