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

Dermatitis Herpefiformis

Lunai

By Lunai
in Dermatitis Herpetiformis

Recommended Posts

Lunai Newbie
Lunai
Posted

This is my first entry as a newcomer to the forum. I was diagnosed with Celiac the day before Canadian Thanksgiving in October/06. What a challenge with dealing with the new diagnosis, having a house full of company and having tons of prepared food which I could no longer eat. I am still finding it a challenge. Some weeks I think I've finally mastered it and feel no pain etc. and then I go and do something wrong. The troublesome part is that I'm not sure what I've done. I'm trying very hard to do the right things and am sticking to the diet to the "T" (I think). :) I'm sure you've heard it all before. Anyway, to the question: Several months ago I began to get these little red spots at random on my face.......one or two beside my nose.....maybe one by my eye etc. They are quite small and can be bright red or just pink. They get kind of a prickly itch at times and take forever to go away. I think one is finally fading and then it will return the next day etc. A larger one appeared on my cheek that I initially thought was a large pimple but it never came to a head....possibly a bit of watery liquid on the top but it didn't look like a blister. It too took a long time to heal and I'm still sporting the red mark it left behind. It's the only big one I've had. Does this sound like HD? I've read that Dapsone is the medication of choice by dermatologists but I'm allergic to Sulpha and the side effects don't sound too pretty. I really don't think my condition is severe enough to merit such a powerful drug but would like some advice to get rid of it. Has anyone had any success with any over the counter medications to treat HD? I'm using 0.05% Hydrocortisone Creme at present (probably more than I should), but am looking for other possibilities. Thanks for any help.

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lillian Newbie
Lillian
Posted
This is my first entry as a newcomer to the forum. I was diagnosed with Celiac the day before Canadian Thanksgiving in October/06. What a challenge with dealing with the new diagnosis, having a house full of company and having tons of prepared food which I could no longer eat. I am still finding it a challenge. Some weeks I think I've finally mastered it and feel no pain etc. and then I go and do something wrong. The troublesome part is that I'm not sure what I've done. I'm trying very hard to do the right things and am sticking to the diet to the "T" (I think). :) I'm sure you've heard it all before. Anyway, to the question: Several months ago I began to get these little red spots at random on my face.......one or two beside my nose.....maybe one by my eye etc. They are quite small and can be bright red or just pink. They get kind of a prickly itch at times and take forever to go away. I think one is finally fading and then it will return the next day etc. A larger one appeared on my cheek that I initially thought was a large pimple but it never came to a head....possibly a bit of watery liquid on the top but it didn't look like a blister. It too took a long time to heal and I'm still sporting the red mark it left behind. It's the only big one I've had. Does this sound like HD? I've read that Dapsone is the medication of choice by dermatologists but I'm allergic to Sulpha and the side effects don't sound too pretty. I really don't think my condition is severe enough to merit such a powerful drug but would like some advice to get rid of it. Has anyone had any success with any over the counter medications to treat HD? I'm using 0.05% Hydrocortisone Creme at present (probably more than I should), but am looking for other possibilities. Thanks for any help.

Hi Lunai. small dose of doxycyline works for me for about two weeks at a time, about 3 times a year. Also some of the dairy products could cause the rash. I'm staying away from Dapsone myself. But chances are you are getting some glutens in you without you knowing. Remember, tons of foods are laced with wheat. Check the labels. Ask for oil, vinegar, lemon for salads in restaurants, or bring your own gluten free dressing. So many of them contain wheat and you don't even know it. Also, make sure you let your waitress know you are gluten intolerant. You have to be your own advocate. Hope this helps. Lillian

Lunai Newbie
Lunai
Posted
  • Author

Thanks for your comment Lillian. I will check with the dr. about alternative treatments although I would like the almost immediate results that Dapsone seems to offer. I rarely go to restaurants because I'm afraid to eat anything but my success rate at home hasn't been great either. After 7 months I thought I would be on track with this. Before being diagnosed with celiac in October I didn't have as severe of a reaction to gluton as I do now, nor did I have DH. Two days ago I made tuna patties (canned tuna, egg, gluten-free spices, onion) and this morning I've broken out in new DH spots on my face. Could this be from the iodine in the tuna? If so are there other foods I should be avoiding as well? I did buy lactose free milk to see if that will help matters. What fun eh? Oh well....keeps me humble. :)

barbara123 Apprentice
barbara123
Posted
Thanks for your comment Lillian. I will check with the dr. about alternative treatments although I would like the almost immediate results that Dapsone seems to offer. I rarely go to restaurants because I'm afraid to eat anything but my success rate at home hasn't been great either. After 7 months I thought I would be on track with this. Before being diagnosed with celiac in October I didn't have as severe of a reaction to gluton as I do now, nor did I have DH. Two days ago I made tuna patties (canned tuna, egg, gluten-free spices, onion) and this morning I've broken out in new DH spots on my face. Could this be from the iodine in the tuna? If so are there other foods I should be avoiding as well? I did buy lactose free milk to see if that will help matters. What fun eh? Oh well....keeps me humble. :)

Guess I have been gluten again, woke up this morning with a break out on my butt. (how wonderful) 2 days ago I woke up hurting and achy. I go to the dr on Thursday, hopefully he will run tests I am unconfirmed celiac disease but I have been on gluten-free diet now for 12 days, Haven't vomited since i quit eating gluten. Longest in at least 1 year. :D

Question is can they do biopsy on sores after 4 days?

Also my niece-in-law has celiac disease and she sent me a book called Dangerous Grains Good Book very informative

BRUMI1968 Collaborator
BRUMI1968
Posted

Be aware that lactose isn't the only problem in milk. lactose is the sugar; CASEIN is the protein, and you may have a problem with it as well. You might want to try dairy free for a spell and see if you feel better.

I know nothing of DH, so I can't help there -- but have you checked all your face/hair/tooth products? What about your laundry soap and dishwasher soap. (I was mortified to find out my dish washing soap had wheat in it a few months ago and had to switch.) Dryer sheets? I don't know.

Good luck.

Lunai Newbie
Lunai
Posted
  • Author

I'm not in the medical field but if the spots are present I see no reason why they couldn't be biopsyed. I haven't had my spots biopsyed because the only spots I have are on my face. I have been dx'ed with celiac since October/06. It was confirmed by endoscopy and the dr. also did a colonoscopy.

I'm glad you're feeling better on the gluten free diet and hope you find out what your problem is so you can get on the road to getting better. I've had my share of ups and downs adjusting to the diet but I know the perseverance is worth it. Take care.

  • 2 weeks later...
SarahCC Rookie
SarahCC
Posted

Well you might want to check the ingrediants of the products you are using on your face. I found out that I was using products that had WHEAT! in them! I had to throw away half of my wonderful lotions/sunscreens and some facial products. I don't remember exactly what the names of the Gluten products are in the lotions and bodywashes but If you ask the forum I am sure that they will let you know. There are a lot of very smart folks out there. Good luck with your spots. I have found that if you keep the spots moisturized to a certain extent that they won't itch as much as if they were dry. Again, good luck and make sure to check ALL of your body products, even body spray.

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
trishydee Rookie
trishydee
Posted

Along those lines....

I was getting super painful pimply-things on my scalp that were driving me crazy. Just for the heck of it, I checked my shampoo ingredients..sure enough, TRESEMME has WHEAT in its shampoo! grrr :angry:

Belinda Meeker Apprentice
Belinda Meeker
Posted
Thanks for your comment Lillian. I will check with the dr. about alternative treatments although I would like the almost immediate results that Dapsone seems to offer. I rarely go to restaurants because I'm afraid to eat anything but my success rate at home hasn't been great either. After 7 months I thought I would be on track with this. Before being diagnosed with celiac in October I didn't have as severe of a reaction to gluton as I do now, nor did I have DH. Two days ago I made tuna patties (canned tuna, egg, gluten-free spices, onion) and this morning I've broken out in new DH spots on my face. Could this be from the iodine in the tuna? If so are there other foods I should be avoiding as well? I did buy lactose free milk to see if that will help matters. What fun eh? Oh well....keeps me humble. :)

Check ur oil or wht ever u used to cook them in :o

I have DH and yes u could have it too, so maybe u r just being cross contaminated or not seeing the hidden clues I know from experience that if I eat one tiny minute of wheat, gluten or any of thier buddy's my DH flairs up and my hubby's looks just like ur's sounds, so try to watch ur soap's face creams, lip stick's or drink's too (always have to cotinue to be a lable reader even if u think it is wheat/gluten free they cold change) :(

Good luck hope u find the source !

We use TING can find it at Wal-Mart :)

Belinda

Belinda Meeker Apprentice
Belinda Meeker
Posted
Thanks for your comment Lillian. I will check with the dr. about alternative treatments although I would like the almost immediate results that Dapsone seems to offer. I rarely go to restaurants because I'm afraid to eat anything but my success rate at home hasn't been great either. After 7 months I thought I would be on track with this. Before being diagnosed with celiac in October I didn't have as severe of a reaction to gluton as I do now, nor did I have DH. Two days ago I made tuna patties (canned tuna, egg, gluten-free spices, onion) and this morning I've broken out in new DH spots on my face. Could this be from the iodine in the tuna? If so are there other foods I should be avoiding as well? I did buy lactose free milk to see if that will help matters. What fun eh? Oh well....keeps me humble. :)

Check ur oil or wht ever u used to cook them in :o

I have DH and yes u could have it too, so maybe u r just being cross contaminated or not seeing the hidden clues I know from experience that if I eat one tiny minute of wheat, gluten or any of thier buddy's my DH flairs up and my hubby's looks just like ur's sounds, so try to watch ur soap's face creams, lip stick's or drink's too (always have to cotinue to be a lable reader even if u think it is wheat/gluten free they cold change) :(

Good luck hope u find the source !

We use TING can find it at Wal-Mart :)

Belinda

Belinda Meeker Apprentice
Belinda Meeker
Posted
Check ur oil or wht ever u used to cook them in :o

I have DH and yes u could have it too, so maybe u r just being cross contaminated or not seeing the hidden clues I know from experience that if I eat one tiny minute of wheat, gluten or any of thier buddy's my DH flairs up and my hubby's looks just like ur's sounds, so try to watch ur soap's face creams, lip stick's or drink's too (always have to cotinue to be a lable reader even if u think it is wheat/gluten free they cold change) :(

Good luck hope u find the source !

We use TING can find it at Wal-Mart :)

Belinda

oops didn't know it came thru sorry :(

Archived

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

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


  • Member Statistics

    • Total Members
      126,852
    • Most Online (within 30 mins)
      7,748
    ToriN
    Newest Member
    ToriN
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Years of testing - no real answers

      By knitty kitty · Posted

      The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  
    • knitty kitty
      What should I do with these test results?

      By knitty kitty · Posted

      @Jack Common, It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.   Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  
    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      Sorry about that link.  It was meant for a different post.   Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.   Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies. A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.   Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.   Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy. Keep us posted on your progress!
    • ABP2025
      Guidance on next steps after the lab tests

      By ABP2025 · Posted

      Thanks sending me additional links including how to test for thiamine deficiency. With regards to your first link, I wasn't diagnosed with giardiasis and I didn't take antibiotic for it. I try to generally stay away from antibiotic unless absolutely necessary as it might affect gut health. For treating phimosis, the doctor didn't give me antibiotics. I need to have a circumcision surgery which I haven't got around to schedule it.
    • ABP2025
      Guidance on next steps after the lab tests

      By ABP2025 · Posted

      I'm not vegan, just vegetarian. I consume dairy but not egg. So I have started including some Vitamin D fortified milk as well as a multivitamin with 2000 IU daily. For Vitamin B12, like you said it's very difficult to get it from just vegetarian sources and have started consuming Vitamin B Complex daily. My PCP was worried when my Vitamin D result came out as It was 3.7 ng/ml last year. He said that being low for a lengthy time could have done some damage to the body over the years. Now, though Vitamin D level has improved after the supplements, I'm not sure if the neurological damage has already been done. I'll continue including the supplements and see if my symptoms improve. I'll also get tested for celiac to see if I need to be in gluten-free diet.
×
×
  • Create New...