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

Hopping Between Physical GI Symptoms and DH

Moonchild94

By Moonchild94
in Dermatitis Herpetiformis

 Share

Recommended Posts

Moonchild94 Rookie
Moonchild94
Posted

Hi everyone! Over this last week I have developed another round of this blistery itchy rash. It really started in 2018 when I believe my symptoms started to change, as this last week has progressed I have noticed I don't have any GI symptoms really but my rash will become incredibly itchy and burning with any gluten ingestion. When it first happened I didn't think it was DH because it didn't look like typical DH, mine looks more like a blister then anything. Anyways this is my 5th breakout of this but I am now noticing it on my hands as well as my torso which is usually where it is right over my stomach oddly enough which made me look into this truly as celiac. 

 

Have any of you gone through patches of the rash and then some time without one? I know it is different for everyone but I'm confused about the switching off between physical digestive symptoms and then this rash. Any help is appreciated, I am still not diagnosed properly yet, I would go in to get this looked at but no doctors in my area are doing in person visits. 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! So if I understand your post correctly, you've never been diagnosed with celiac disease or DH, but you've noticed some skin blistering that may be associated with gluten consumption. If this is correct, and you are still consuming gluten, now would be a good time for you to get a blood panel test for celiac disease. In a perfect world it would also be a great time to get a DH biopsy done on the rash, but it would require an in-person visit.

There is no real way to tell based on just your post what it could be, as there are lots of possibilities.

Mushroom65 Newbie
Mushroom65
Posted

I had developed this issue but only after eating gluten free oats. Went back on my strict gluten-free diet, not oats, and now all is good. Obviously something you’re eating is causing your systems. Try an elimination diet. Write down everything. Stay strictly gluten-free. 
Let me know if I can help. Marsha

ernieb Newbie
ernieb
Posted
On 8/26/2021 at 3:30 PM, Moonchild94 said:

Hi everyone! Over this last week I have developed another round of this blistery itchy rash. It really started in 2018 when I believe my symptoms started to change, as this last week has progressed I have noticed I don't have any GI symptoms really but my rash will become incredibly itchy and burning with any gluten ingestion. When it first happened I didn't think it was DH because it didn't look like typical DH, mine looks more like a blister then anything. Anyways this is my 5th breakout of this but I am now noticing it on my hands as well as my torso which is usually where it is right over my stomach oddly enough which made me look into this truly as celiac. 

 

Have any of you gone through patches of the rash and then some time without one? I know it is different for everyone but I'm confused about the switching off between physical digestive symptoms and then this rash. Any help is appreciated, I am still not diagnosed properly yet, I would go in to get this looked at but no doctors in my area are doing in person visits. 

I have experienced DH for 14 years and many times with GI symptoms.  The only way I have been able to control DH (because quite frankly all of us get exposed routinely to gluten through fillers in the various tablets we ingest) is to take a drug called Dapsone.  Look it up, speak with your doc about it.  50 mg of Dapsone at bedtime usually keeps DH AWAY! for me.

Now Dapsone is an old drug, and is prescribed for leprosy, and is generally what I call I a wicked drug as it lowers my red blood count, to the point that I am officially anemic (drug-induced anemia).  That is fine with me, fine with my internist and keeps me steady.  I have learned to live with it, and simply very thankful.  ernieb

trents Grand Master
trents
Posted
(edited)
26 minutes ago, ernieb said:

I have experienced DH for 14 years and many times with GI symptoms.  The only way I have been able to control DH (because quite frankly all of us get exposed routinely to gluten through fillers in the various tablets we ingest) is to take a drug called Dapsone.  Look it up, speak with your doc about it.  50 mg of Dapsone at bedtime usually keeps DH AWAY! for me.

Now Dapsone is an old drug, and is prescribed for leprosy, and is generally what I call I a wicked drug as it lowers my red blood count, to the point that I am officially anemic (drug-induced anemia).  That is fine with me, fine with my internist and keeps me steady.  I have learned to live with it, and simply very thankful.  ernieb

"Dapsone is a small molecule with anti-inflammatory immunosuppressive properties as well as antibacterial and antibiotic properties. It is used clinically to treat leprosy and malaria, and is being investigated for the treatment of a variety of skin infections." (from https://www.alzforum.org/therapeutics/dapsone#:~:text=Dapsone is a small molecule,a variety of skin infections.

Sometimes we must pick our poison but be aware that taking an immunosuppressant and an antibiotic that you open yourself up to possibly worse infections or even cancer and you are also altering your gut bacteria mix.

Edited by trents
ernieb Newbie
ernieb
Posted
6 hours ago, trents said:

"Dapsone is a small molecule with anti-inflammatory immunosuppressive properties as well as antibacterial and antibiotic properties. It is used clinically to treat leprosy and malaria, and is being investigated for the treatment of a variety of skin infections." (from https://www.alzforum.org/therapeutics/dapsone#:~:text=Dapsone is a small molecule,a variety of skin infections.

Sometimes we must pick our poison but be aware that taking an immunosuppressant and an antibiotic that you open yourself up to possibly worse infections or even cancer and you are also altering your gut bacteria mix.

agree that one must be aware of the risks involved; however for me,  the risk is small  when compared to  uncontrollable itching results from unintentional glutening

marcib419 Newbie
marcib419
Posted

Hi.  The blisters are a form of celiac.  Called dermatitis herpe tiformus.  I had that on my elbows, knees and lower back. Was diagnosed with celiac, and dr. Told me that it is a form of celiac also I have GI symptoms.  I took dapsone for 2 years, and it helped with the blisters, but I decided to follow a full gluten free diet, and I don't get blisters anymore.  There is an ointment by prescription for the itchy blisters called Clobetasol.  Good luck

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.