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

Is There Are Any Any Bath Soaks For The Raging Itch?

Guest ellyntoomey

By Guest ellyntoomey
in Dermatitis Herpetiformis

Recommended Posts

Guest ellyntoomey
Guest ellyntoomey
Posted

I have a raging rash and itch. I wake up at night bleeding from the itch. I was on oral steriods, but have weaned off them. Dapsone pills do nothing. The only thing that works is a shot of steriods every 6 weeks, but this can't go on forever. I have steriod cream, but after 7 months of this, it seems to be not as affected.

Is there anything out there, something to soak in, some ointment or meds? I am out of my mind. Is there some medication that I am not taking. I have hydroxzine pills, but they just make me sleep. I have tried other various prescription creams, none of them work.

I am gluten free diet for 6 months and it is as bad as ever.

I am losing hope, please help me.

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

This may be of no help, but if the gluten-free diet and dapsone aren't helping, it sounds like you've got something other than DH.

richard

jerseyangel Proficient
jerseyangel
Posted

If it turns out not to be DH, it sounds a lot like my eczema. Have you ever tried the prescription creme called Elocon? It helped me greatly.

Eve Newbie
Eve
Posted
I have a raging rash and itch. I wake up at night bleeding from the itch. I was on oral steriods, but have weaned off them. Dapsone pills do nothing. The only thing that works is a shot of steriods every 6 weeks, but this can't go on forever. I have steriod cream, but after 7 months of this, it seems to be not as affected.

Is there anything out there, something to soak in, some ointment or meds? I am out of my mind. Is there some medication that I am not taking. I have hydroxzine pills, but they just make me sleep. I have tried other various prescription creams, none of them work.

I am gluten free diet for 6 months and it is as bad as ever.

I am losing hope, please help me.

The best thing for Itch that I know of is Tea Tree Oil..Go to wal mart and get Herbal Harvest Tea Tree oil 100% pure. You shouldent use it on your skin but if you soak in it it should sooth the ich. Nice warm tub not to hot and you can use a bit of baking soda too.. that helps .... Burts bees has some great salves that are gluten free that have helped me.. check them out burtsbees.com. If tha dosen't work Have you tried Reiki or acupuncture? That really helped me..

Eve ;)

Guest ellyntoomey
Guest ellyntoomey
Posted

I have been tested and have Celiac.

I have contacted the University Of Maryland which has the world's largest research center for Celiac Disease. They are running clinical trials for a drug (Dr. Alessio Fasano) that blocks the effects of gluten.

It has shown positive results.

I need relief because the itching and rash are driving me to distraction, hard to focus on work, sleep etc.

The only true fix is a shot of steriods every 6 weeks. not good.

tarnalberry Community Regular
tarnalberry
Posted

Verify that you've got all gluten out of your diet - go over everything you're eating with a fine tooth comb.

Also, make sure to drastically reduce you're iodine consumption until this DH episode goes away fully.

StrongerToday Enthusiast
StrongerToday
Posted

Obviously an oatmeal bath is out - but you try soaking in a tub with some baking soda.

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

If you have been 100% gluten free for 6 months, then I would think that the dh would have subsided by now. Maybe you are having allergic reactions to something else?

jerseyangel Proficient
jerseyangel
Posted
I have been tested and have Celiac.

I have contacted the University Of Maryland which has the world's largest research center for Celiac Disease. They are running clinical trials for a drug (Dr. Alessio Fasano) that blocks the effects of gluten.

It has shown positive results.

I need relief because the itching and rash are driving me to distraction, hard to focus on work, sleep etc.

The only true fix is a shot of steriods every 6 weeks. not good.

I didn't mean to imply that you don't have Celiac. I have Celiac, and also have eczema. I, too used to get the steroid injections--Decadron. Felt great, until it wore off. I'll be dealing with the long-term side effects of those for the rest of my life. The cream I suggested is useful for all kinds of dermatitis. Hope you find some relief soon :)

lovegrov Collaborator
lovegrov
Posted

But have you been tested for DH? Most people with celiac DON'T have DH. In addition, steroids have no effect on DH.

richard

  • 1 month later...
Guest ellyntoomey
Guest ellyntoomey
Posted

:o

I had the blood test and was positive for the enezyme. Also, my sister has Celiac, but she has the gastro effects. Her intestinal tract is healed after 2 years of gluten free diet.

I am gluten free to the best of my knowledge. I have 2 drinks with Kalhua and vodka when I get home from work. I smoke New ports, but I can't beleive that cigs and a couple of drinks per night affect my DH.

I just am getting health insurance so I can go to a gastro and internist to try to help myself. I am off the presdnisone, and just started dapsone again. But the rash is the worse it has ever been.

I just moved to southern Delaware, and have a new job. I need relief from this intching, need further testing to make sure I have no other allergies and to monitor my blood levels while taking Dapsone. I got Dapsone & Prednisone from a doctor in NH (he did the blood test).

I am really depressed, and my skin rash is out of control. I have been gluten free for 7-8 months to the best of my ability.

If anyone has any suggestions for the rash, let me know.

I have tried elidel, and other creams for execma, cortisone, dapsone, anti biotics, prednisone. The only thing that kicks it is a shot every 6 weeks.

  • 2 weeks later...
elkris Newbie
elkris
Posted
I have a raging rash and itch. I wake up at night bleeding from the itch. I was on oral steriods, but have weaned off them. Dapsone pills do nothing. The only thing that works is a shot of steriods every 6 weeks, but this can't go on forever. I have steriod cream, but after 7 months of this, it seems to be not as affected.

Is there anything out there, something to soak in, some ointment or meds? I am out of my mind. Is there some medication that I am not taking. I have hydroxzine pills, but they just make me sleep. I have tried other various prescription creams, none of them work.

I am gluten free diet for 6 months and it is as bad as ever.

I am losing hope, please help me.

Hi Ellyn. Have you tried taking flax oil pills?? I have had dh since High School. I kind of accidently discovered about 10 years ago that flax pills both prevent the itch and sores aand also help to make them go away.

Good luck.

Ellie

Hi Ellyn. Have you tried taking flax oil pills?? I have had dh since High School. I kind of accidently discovered about 10 years ago that flax pills both prevent the itch and sores aand also help to make them go away.

Good luck.

Ellie

rumbles Newbie
rumbles
Posted

Kahlua has gluten in it. Vodka, unless it's a true potato vodka (such as Glacier brand), has gluten in it.

tarnalberry Community Regular
tarnalberry
Posted
Kahlua has gluten in it. Vodka, unless it's a true potato vodka (such as Glacier brand), has gluten in it.

That is not true. Even vodka distilled from wheat does not have gluten in it because the distillation process simply doesn't allow a molecule as large as gluten through.

(Remember being a kid, and having those toys with the holes and the blocks with pegs that fit in them? There were big holes and little holes, and big blocks and little blocks? Distillation has lots and lots and lots and lots of little holes, and gluten is one really really big block. No shoving occurs in the distillation apparatus, so there's no shoving the big block through the really small holes to the end product.)

(I don't know about Kahlua...)

Claire Collaborator
Claire
Posted

Some things to try:

Baking soda in warm bath water. At least one half cup.

For topical application: spray Solarcane. Works quickly and lasts for quite awhile.

Also Ivy Dry - cream or lotion

Also - Band Aid Itch Relief Gel Spritz (can find this at Wal-Mart)

Hope something here helps. I know just how it is. Claire

Guest nini
Guest nini
Posted

I thought Kahlua had been confirmed gluten-free by the company? I swear I saw that somewhere. :huh:

I would probably soak in a tub with some chamomile to soothe the savage beastie, it also could be systemic candida... I had a real problem with that and had to do a candida cleanse as well as going gluten-free. Systemic candida can cause rash and itching all over and seriously drive you to distraction!

  • 3 months later...
up-late Rookie
up-late
Posted

I get something like that, not sure what causes it. I tried everything even the anti allergy tablets didn't work. The only think that helped was using a topical anasthetic like zylocane, it didn't clear it up but it stopped the itching and burning, I found if I could just stop scratching it improved.

  • 4 weeks later...
iamjv Newbie
iamjv
Posted

Per 'this site' both kahlua and vodka are gluten free. see the link below. JV

spirited drinks

ArtGirl Enthusiast
ArtGirl
Posted

Sounds like you've been given several suggestions that might work for you. I don't have DH, so can't be of help there. But, I do suffer from itchy skin (not as bad as yours, though). I am finding that it is not from gluten, but most likely from some other food allergy. I thought it was corn, and actually, it's less itchy now that I'm off all corn derivatives. I know you said you were going to have tests run for other allergies. If there are other food allergies indicated, then eliminating them may help reduce the itching. Just a thought.

lindalee Enthusiast
lindalee
Posted

Oil of oregano helps me. Put a drop in water and drink and a drop on the itchy area. Its my new perfume! :)

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed 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.