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

I Think I Have Dh

Adalaide

By Adalaide
in Dermatitis Herpetiformis

Recommended Posts

Adalaide Mentor
Adalaide
Posted

I never thought I'd be posting in this forum and in fact this is my worst nightmare. I already suffer from aquagenic priuritis, pretty much water makes me itch. Showering is literally torture for me and leaves me racing for a bottle of lotion. Add eczema and generally dry skin and my itchiness already has me on the verge of criminally insane.

So about 2 weeks ago I made a really stupid mistake in label reading. I still hate myself for it, it was my first and last time it happened. Then a couple days ago I started itching on my back. Bad. Not my normal itching, but like... enough to make me want to claw my skin off until I bleed for all I care, just so I get some sort of relief. Then it turned red, then red/white blotchy and then got covered in little white blistery pustule type things. I knew as soon as the itching started that it was possibly DH. Then the blistery things popped up and now I'm at the point of a 5 year old with chicken pox, if I don't pretty much cut my nails down to the skin or tie socks on my hands before it gets to its peak tonight I'll probably scratch myself into bloody oblivion.

Life was pretty topsy turvy during the time I ate what I shouldn't have and I didn't go to the doctor like I should have for steroids. Is it too late? I know I should go beg for dapsone but I already have neuropathy issues and am not keen on making those any worse. On the other hand there aren't any side effects of long term, high dose steroids I can't handle. I'm more than happy living my life without a high functioning immune system if I need to. I don't rightly care if I have to lock myself in a closet until the day I die at this point if it'll stop the itching. I just need to retain the use of both hands, which I doubt dapsone will allow me to do.

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

Celiac.com Sponsor (A8-M):


kitgordon Explorer
kitgordon
Posted

I'm so sorry. DH is truly miserable. I get too many adverse reactions to prescriptions to try steroids or dapsone, so I don't know what to suggest about that. Benadryl or Zyrtec will help a little with the itch, but it's nothing like total relief. I am trying the low-iodine diet, but not far enough into it to know if it will help. Hope you get relief soon!

pricklypear1971 Community Regular
pricklypear1971
Posted

For me, DH runs a 2 week course - regardless. I can generally stop new blisters by following the thyca low iodine diet.

Ice packs help me the most. Also, I keep the rash moisturized with Vanicream. I pack washcloths on the blisters when they fill and weep - pressure helps, too.

If you've never tried meditation or visualization for pain control, now is a good time to start.

Steroids may or may not help. You may achieve the same goal using topical steroids available at the pharmacy. That said, my rash had been active for a long time prior to trying oral steroids, and they did work for the rash - so they don't have to be taken at the start of the rash.

ciamarie Rookie
ciamarie
Posted

That stinks, sorry to hear it! I'm guessing you probably already use shampoo without wheat, but I thought I'd mention it. In addition, check out this thread with some possible solutions for itch relief:

squirmingitch Veteran
squirmingitch
Posted

Oh Adelaide, you needed this like you needed a hole in the head. :wacko: I'm sooooooo sorry!

Mine runs a course of about 4-6 weeks & sometimes 8. What happens is that the first ones come & then behind them more & then more so it gets to where some are healing while others are breaking out & then there are some in between the two. It's truly a b%$@# with a capital B! :ph34r:

Great Big HUGS (((((Adelaide))))))

Adalaide Mentor
Adalaide
Posted
  • Author

Thanks guys! I took some Benadryl before bed last night which is always a risk on how it'll effect me. I passed out for about 12 hours and I'm still pretty loopy today. I'll make my husband calamine me later I think. I can't afford to be loopy tomorrow with a kid to watch. Plus I plan on going to the doctor to review my options. I want drugs. I've made every effort to be as free of prescriptions as possible but now? Sign me up for anything that could possibly maybe help.

I've made sure to have gluten free lotions and shampoos and all that for a long time, but that is a good reminder for everyone I guess. I'm a toucher and I don't even think about it. I just touch touch touch my hair and stuff so I can't afford not to have gluten free everything.

The tyramine free diet is so restrictive its crazy. I've clung to dairy like a lifeline. Now... nothing. There aren't even subtitutes for milk left for me. I'm just going to hide under a rock until this goes away and hope I don't starve to death. It is finally so bad I've had to post cross reference lists on my fridge so I make sure that something is safe on all the lists.

pricklypear1971 Community Regular
pricklypear1971
Posted

Thanks guys! I took some Benadryl before bed last night which is always a risk on how it'll effect me. I passed out for about 12 hours and I'm still pretty loopy today. I'll make my husband calamine me later I think. I can't afford to be loopy tomorrow with a kid to watch. Plus I plan on going to the doctor to review my options. I want drugs. I've made every effort to be as free of prescriptions as possible but now? Sign me up for anything that could possibly maybe help.

I've made sure to have gluten free lotions and shampoos and all that for a long time, but that is a good reminder for everyone I guess. I'm a toucher and I don't even think about it. I just touch touch touch my hair and stuff so I can't afford not to have gluten free everything.

The tyramine free diet is so restrictive its crazy. I've clung to dairy like a lifeline. Now... nothing. There aren't even subtitutes for milk left for me. I'm just going to hide under a rock until this goes away and hope I don't starve to death. It is finally so bad I've had to post cross reference lists on my fridge so I make sure that something is safe on all the lists.

FYI milk wasn't a big iodine trigger for me, as long as carageenan wasn't added to it (some half n halfs, cream cheese). But egg yolks sure were...

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

Celiac.com Sponsor (A8-M):


jlaw Apprentice
jlaw
Posted

oh no. I'm so sorry Adalaide. Keep with the low iodine as well and it should shorten the lifespan of your DH. I also couldn't care less if I never eat again :-( Hang in there. Post as you need to if you just need to vent.

tlcounts Newbie
tlcounts
Posted

Thanks guys! I took some Benadryl before bed last night which is always a risk on how it'll effect me.

I prefer Zyrtec personally, my kids take it daily for allergies. It doesn't make me sleepy and it last for 24 hours. There is also a perscription version if you need something stronger.

Good luck! When ever I accidently get gluten it just takes some time to heal.

Adalaide Mentor
Adalaide
Posted
  • Author

Well, the doctor's visit went well. My doctor wasn't available today so I saw one of the PAs that I love to pieces. She was super helpful and agreed that it definitely sounds and looks like DH and that doing a biopsy is probably a waste of time and money since I already have a confirmed biopsy diagnosis of my celiac.There is something that just breaks inside you when you hear the PA looking at your back audibly gasp. :( She didn't want to go with dapsone since my neuropathy is so severe already so we're going with a 5 day steroid to see if it help and we'll go from there. At the very least it'll help me get some of my memory and motor function back if nothing else.

Good news. I'm down 20 pounds! Woohoo! :D I'm so happy it almost makes up for it. At least I know that I'm doing something right with my eating habits.

squirmingitch Veteran
squirmingitch
Posted

Well, I hope the steroid does the trick. I'm sure it will do something & give you some relief. BEFORE I knew this was celiac & therefore before I went gluten-free; I was put on a mega steroid called Dexamethasone & it worked great ..... as long as I was taking it, but the second I stopped the dh came roaring back worse than before. I had some of those left after I went gluten-free & took some in the early days of gluten-free & found much the same effect as prior to going gluten-free ---- that is; the second I stopped the steroid the dh came roaring back. The Dex was really harsh on me too --- it had me speeding my brains out. I was bouncing off the walls & couldn't sleep a wink.

Kudos on the 20 lb. weight loss! :)

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. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    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

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.