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

My Dh Is Not Disappearing...


Woolygimp

Recommended Posts

Woolygimp Contributor

I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

You're absolutely sure this is DH? Those are not the most common places for DH. Those are some of the places I have psoriasis.

richard

mushroom Proficient

Richard, I wondered the same thing. Those are two of the places my psoriasis pops up. Woolygimp, can you describe this rash to us? Does it have any scales or flakes? What color is is when it fades?

YoloGx Rookie

Whatever it is, you might want to consider using the detox herbs (dandelion, milk thistle, cleavers) and /or a variety of other ways to detox: exercise, saunas, mudpacks, fresh juiced or blended vegetables (esp. add some parsley or coriander) each day.

Bea

ravenwoodglass Mentor

Are you using iodized salt or taking a supplement with iodine? If you are stop using them for a bit. Iodine can keep the reaction active even if your not consuming gluten. You can add it back in after you have healed completely and the antibodies have left the skin.

Maggie Mermaid Apprentice
I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.

Are you taking any vitamin supplements? Could be something in them you are reacting to, especially something like fish oil supplements. My husband had a reaction to the iodine in seafood and is allergic to tomato sauce and large tomatoes.

byoung20415 Newbie

You could be having a reaction to the gluten in your laundry soap or shower soap. I have reactions to stuff like that. I can't walk on our carpet bare footed because it has a stain sealer that contains gluten and it causes a reaction for me. Be sure your not sitting on a sofa that may have a stain sealer on it, too. Good luck! Stay gluten-free!


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Please, byoung, there's no use in scaring people to death. If you truly react to walking on a carpet or sitting on furniture, you are the very FIRST person with celiac I've ever heard of having this problem. This simply is NOT a problem for celiacs.

richard

ravenwoodglass Mentor
Please, byoung, there's no use in scaring people to death. If you truly react to walking on a carpet or sitting on furniture, you are the very FIRST person with celiac I've ever heard of having this problem. This simply is NOT a problem for celiacs.

richard

I agree. I am super sensitive and these are just not things I would worry about.

psawyer Proficient
Please, byoung, there's no use in scaring people to death. If you truly react to walking on a carpet or sitting on furniture, you are the very FIRST person with celiac I've ever heard of having this problem. This simply is NOT a problem for celiacs.

richard

I agree too. Like the vast majority of celiacs, I do not react to skin contact. In my business, I frequently handle products containing wheat. I wash my hands thoroughly after doing so, and have never had a problem. Worry about what you eat, not about what you walk or sit on.

If you have an allergy to something, then skin contact might be an issue.

ChemistMama Contributor

Woolygimp:

My DH got much worse before it got better. I eventually broke down and went on dapsone to clear it up. However, in one spot with the oldest lesions I"m still trying to heal them after a year due to secondary skin problems I ended up with because of the scratching.

However, the posters below are right, it doesn't sound like DH. DH (1) itches like crazy, and (2) leaves behind purple scars. If neither of these are true, you may want to see your dermatologist.

As for skin contact, DH is initiated in the intestinal tract, when gluten you eat causes antibodies to form which attack your skin. If you are sensitive to touching things with gluten, you have an allergy, not DH.

nasalady Contributor

Hi Woolygimp (and ChemistMama),

My DH got much worse before it got better. I eventually broke down and went on dapsone to clear it up. However, in one spot with the oldest lesions I"m still trying to heal them after a year due to secondary skin problems I ended up with because of the scratching.

Same thing with my husband, Paul. His DH got worse before getting better, even after being gluten free. Ended up on Dapsone for quite a while.

However, the posters below are right, it doesn't sound like DH. DH (1) itches like crazy, and (2) leaves behind purple scars. If neither of these are true, you may want to see your dermatologist.

The problem for Paul was that he developed a severe case of psoriasis simultaneously with the DH, and in a lot of the same places! It was terribly confusing and delayed treatment of the psoriasis.

It was tough at first to figure out which was which, but then it became obvious because the DH itched like crazy, and either looked like blisters or like craters where blisters once were, and it turned very dark purple as it healed.

The psoriasis behaved very differently from the DH....and it even looks and acts different depending where it is on his body! On his hands it makes his fingers crack and split, while on his knees and ankles it gets crusty. But he has DH on his knees too. :(

There are several different types of psoriasis, and some of them superficially resemble DH. You may want to consult a dermatologist to help you sort things out.....

Good luck!

JoAnn

  • 2 weeks later...
TSC1 Newbie

It may be for others. Lotions and potions included, if they contain gluten may cause a reaction in some. Therefore, it is best to avoid them. Remember, for some, Celiac has no symptoms, but the damage is being done. For me, even a soup base that was once used for pasta or French fries in the same oil as fried goods with batter or flour cause a reaction. I am sure these are in minute amounts and I do not get a full reaction. Therefore, I think that lotions and potions applied to the skin or coming in contact with your hands could also be absorbed especially if you eat or touch your mouth without thinking afterwards. Even in that amount it could be enough in some people to cause a reaction.

TSC1 Newbie

Tricky. If as I making my partner a sandwich, I segregate it and all utensils, and wash my hands each time I cross over, most times no reaction, but sometimes some, even if I am careful. Remember, all you need it an eight of a teaspoon to cause a major reaction. Therefore, I would not make a pizza from scratch for your friends if I were you.

TSC1 Newbie

Joann,

I had both too. Therefore, I know the difference. One has bumps that appear and are very itchy and almost look like miniature pimples. The other has the symptoms you described. My father had it on his chest as I did for many years. Sometime on my arms and waist. The doctor gave up and finally stated he had "scabies". Where would he get scabies and my stepmother who slept in the same bed did not have them. He also had low blood calcium and boats of diarrhea until he was diagnosed with Pancreatic cancer, but never diagnosed with Celiac. When they opened him up for an operation to minimize the cancer, the doctor stated his small intestine was so scarred it was impossible not to believe he had a terrible accident at one time. My father never had an accident or was hospitalized except for hepatitis when he was 17. Otherwise, the doctor stated there was no other reason. Now that I have been diagnosed with Celiac, it confirms for me that through his Northern European roots, he maybe was never diagnosed. On question, where can I be tested for the genetic disposition?

mushroom Proficient

Joann,

I had both too. Therefore, I know the difference. One has bumps that appear and are very itchy and almost look like miniature pimples. The other has the symptoms you described. My father had it on his chest as I did for many years. Sometime on my arms and waist. The doctor gave up and finally stated he had "scabies". Where would he get scabies and my stepmother who slept in the same bed did not have them. He also had low blood calcium and boats of diarrhea until he was diagnosed with Pancreatic cancer, but never diagnosed with Celiac. When they opened him up for an operation to minimize the cancer, the doctor stated his small intestine was so scarred it was impossible not to believe he had a terrible accident at one time. My father never had an accident or was hospitalized except for hepatitis when he was 17. Otherwise, the doctor stated there was no other reason. Now that I have been diagnosed with Celiac, it confirms for me that through his Northern European roots, he maybe was never diagnosed. On question, where can I be tested for the genetic disposition?

A company named Enterolab does genetic stool testing by mail. A quick google should find lots of information here and on the web about Enterolab.

mysecretcurse Contributor
I agree too. Like the vast majority of celiacs, I do not react to skin contact. In my business, I frequently handle products containing wheat. I wash my hands thoroughly after doing so, and have never had a problem. Worry about what you eat, not about what you walk or sit on.

Hey. While I am happy you guys arent that sensitive and I agree a lot of celiacs probably aren't, I just wanted to point out that I DO react, violently, to even touching gluten. I broke out in an intensely itchy and painful rash all over my hands and lower arms just from moving a clump of (didnt know at the time, but wheat) straw from one place to another while cleaning out a chicken house... I am deathly, deathly reactive to gluten and have had these reactions from accidentally touching it multiples of times... so I think the cleaner/carpet stuff, and anything else a person could touch, IS to be considered. Sorry not meaning to sound like I have attitude, its just frustrating to hear people say "don't worry" and what not about something that I know could make ME personally very very ill.

dh mom Newbie

I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.

dh mom Newbie

Hi, it still may be DH. Our son's was diagnosed a yr and ahalf ago and at the time had an extremely bad breakout everywhere, arms, neck, face, eyes, eyebrows, back and chest, knees(front) and elboiws(outside). Sulphapyradine (from Jacobus pharmaceuticals, ....see note to Martha in "looking for soothing relief blog) provided relief. It gets RID of the rash. However, (the point of all of this....) when our son gets into gluten now, even trace amounts, he does breeak out on arms, back and chest, even before knees and elbows. Have you had a lesions biopsied?

Glamour Explorer

I am allergic to horses, cows, most dogs, some cats, etc.

I can't go anywhere near hay, animals around or not. A barn is enough to send me to the hospital.

Remember allergies, eczema and other skin issues, along with asthma are often found together along with other autoimmune conditions.

My DH (if it is DH) is not going away, and I keep wondering if maybe it is a contact allergy, food allergy or whatever.

I also wonder if I am making myself crazy and reactive to gluten, because of the stress of trying to figure out exactly what this rash is. The only stomach issues I have, is really bad gas after eating almost anything, after a lifetime of rarely having gas issues.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,705
    • Most Online (within 30 mins)
      7,748

    Doreen Brace
    Newest Member
    Doreen Brace
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Gigi2025
      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.