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.

  • 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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

    2. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

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

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,166
    • Most Online (within 30 mins)
      7,748

    AmynDevyn
    Newest Member
    AmynDevyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
×
×
  • 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.