Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Am I Doing Something Wrong? Can't Take This Anymore.

GFreeMO

By GFreeMO
in Dermatitis Herpetiformis

Recommended Posts

GFreeMO Proficient
GFreeMO
Posted

Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Have you tried iodine elimination? A lot of DH'ers find it makes it a zillion times worse. And DH hangs around for a long time, unfortunately. :( - longer than GI antibodies, that's for sure.

GFreeMO Proficient
GFreeMO
Posted
  • Author

I haven't tried low iodine yet....It sounds next to impossible. Isn't there salt in everything? I will if I have to though.

Darkfire Ann Newbie
Darkfire Ann
Posted

I am working on this myself. It is almost impossible but it can be done. Apparently most salt is NO iodine in stuff you buy. But sea salt isn't. I bleed so bad it scares me. I thought I was dying the first time my leg bled it was running into the toilet I was scared to death. The Derm was like....Oh it happens..>WHAT?

squirmingitch Veteran
squirmingitch
Posted

I feel your pain Gluten-Free. I'm going through one of those myself which began in early Sept. & stillllllll going. I think ....... but won't finish the sentence for fear of jinxing myself. :lol: :lol: I did that once before & actually said it & BAM! the dh went nuts. So shhhhhhhhhhhhh......

Okay. DH can present at any time for up to 2 years ( & some references say :ph34r: 10 years :ph34r: :ph34r: :ph34r: ) after going gluten-free. The antibodies have to get out of the skin. So this can happen & no, you're not doing anything wrong. If my hubs & I didn't have a gluten-free household & we did not prepare ALL our own food, 99% of which is whole foods; then I would be totally freaking (okay, I am totally freaking but not b/c I think I've been cc'd) thinking that I was getting glutened from somewhere. But since I am 110% positive I'm not getting gluten from anywhere then I know this is just what it does.

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

mushroom Proficient
mushroom
Posted

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

Leeches come to mind :rolleyes:

squirmingitch Veteran
squirmingitch
Posted

Leeches it IS! I'll run right out tomorrow & get a couple thousand. :lol: :lol: :lol:

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

Celiac.com Sponsor (A8-M):


sisterlynr Explorer
sisterlynr
Posted

Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

I found I was eating what I thought was corn chips and found out later the restaurant had changed to flour/corn chips. Maybe you can review your food intake? I was a salt freak and stopped using any salt unless it was sea salt w/o iodine. I am on Dapsone and I really feel it has been a life saver for me. I suffered for 7 months the intense itch, sting, burn and yes the blood. It seems these lesions bleed more than anything I've ever experienced. Must have something to do with the properties of DH.

I'm having a bit of a new breakout (in the place of healed lesions) on my lower back. I've been applying Tolnaftate 1% to dry these places. It has petroleum to smooth it on. . . seems to dry but not flake.

GFreeMO Proficient
GFreeMO
Posted
  • Author

I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

squirmingitch Veteran
squirmingitch
Posted

I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

Yes, I find that happens to me too. Also I have noticed that when a dh flare is really getting going I actually have a little bit of a temperature. The temp. goes back to normal in a day or two.

GFreeMO Proficient
GFreeMO
Posted
  • Author

Same here with the low temp. Blows that we have to deal with this but it really is comforting to know that we are not alone in it all.

Do you ever get DH on your scalp? MIne is now coming down my forehead. I look and feel awful.

squirmingitch Veteran
squirmingitch
Posted

Oh Gawd! The scalp!!!!!!!!!!!!!!! It's horrid just horrid! There are crusts & where there aren't crusts there is oozing. The hair gets stuck to your head. I will wake at night & the pillowcase is so wet with oozing I can't find a dry place for my face. In the morning the pillowcase is stuck to the pillow. It's disgusting & makes me feel disgusting. I've taken to washing my hair each & every night b/c the more dried ooze & crusts that build up seems to be the more it itches. I get ones just out of the hairline & they look awful. I have also had tiny, quick ones on my face & so far....... I live in fear of the day I get big old honkers on my face.

And my ears....it gets in my ears, on the edges of my ears, on my earlobes, INSIDE my pierce hole of the earlobe.

ciamarie Rookie
ciamarie
Posted

I've actually been doing pretty good, thankfully! Even itching behind the knees is a rare thing for the last couple of weeks. I think I may be absorbing iodine better. For salt, I've been using the Morton canning & pickling salt. It has NO additives, not even for anti-caking. I quit sea salt for a while, went back to it for a bit and think I had some issues with it. Otherwise I do eat salted butter and eggs with yolks just fine. But I did have some issues with 1 brand of butter I tried, so there was something in there that bothered my system.

I did want to add that I'm still avoiding the sulfites, as well as MSG type ingredients. That helped a ton, also.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Just one more thing to look at...some laundry soaps may contain gluten. I know Whisk is one of them.

Stress can also bring out DH. Maybe the stress of the holidays brought yours out? I hope it goes away for you. It's miserable!

L.J. Rookie
L.J.
Posted

I too have rashes--have for awhile. It definitely got better when I went gluten-free, peanut free, and although I don't do the "low iodine diet"--I do not add *any* salt (or spices) to food...I only use pepper. At first, I thought things tasted bland--now I like it. When I do eat something that hubby fixed with salt--my rash gets more inflammed.

Another thought--this may or may not apply to anyone but--we can have other allergies that give us crusty, itchy, scaley, bleeding and oozy rashes. I found out my cell phone cover (rubber) was affecting my ears/neck/. I changed shampoo, conditioner, hair dye, and laundry soap a long time ago--but still had the rash on my neck, ears, forehead. It appears that contact allergies "spread" and go "further" than just where the contact of it is.

Now, I am working on getting rid of the rubber in my house (easier said than done)--cell phone case is gone--and in almost two days my ears are better since getting rid of it :D Shhhhh ;)

But, I still have a rash on my forehead--Guess where I found rubber elastic??? Last night--on my shower cap that is right where the rash on my forehead and scalp is (I also lost hair there too) :rolleyes: Sooooooooooooo, I am skipping on the leeches :lol: and buying a new hairbrush (new one with no rubber on it) and looking for something to cover my hair at pm for when I wash my face... Today!!! :D

cavernio Enthusiast
cavernio
Posted

Well, if iodine is in salted processed foods, and if your only possible source of CC is processed foods, you can kill 2 birds with one stone right there.

Kansas Rookie
Kansas
Posted

Are you eating anything with vanilla in it? While I don't get sick like a real glutening, I itch! It is the kind of vanilla that is supposed to be safe for us. Dairy and soy also give me gluten like symptoms, itching, dry skin, hair loss, sleep problems, etc. So, no gluten, including vanilla and white vinegar, no soy and no dairy... skin and hair does great and no itching.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,765
    • Most Online (within 30 mins)
      7,748
    ViolinNP
    Newest Member
    ViolinNP
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Testing for celiac

      By knitty kitty · Posted

      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I am new here, I have been diagnosed with Microscopic Colitis (Lymphatic) years ago and have been gluten-free, DF since, but I still can have occasional bouts of diarrhea (still trying to figure that out).  I also have MS, Hypothyroid, Arthritis, Reynaud's and my rosacea has been acting up lately.  What treatment is suggested to help with rosacea?  I would like to know too if there is a test for celiac if you have been gluten-free?   Thank you, Barb    
    • bluebird2032
      Gluten free/ non dairy , low calorie pudding

      By bluebird2032 · Posted

      Gluten free/ non dairy , low calorie pudding ideas please?
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    • kate g
      Nandos improper preparion celiac childrens food

      By kate g · Posted

      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely for chicken.  This is fine and what we ordered however nandos need to take note of your practises for the safety of celiac children. my daughter has been ill from their nandinos chicken before and i emailed head office and they wouldnt accept responsibility 
×
×
  • Create New...