Dermatitis Herpefiformis

[Lunai]

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.

[Lillian]

  Lunai said:

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]

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]

  Lunai said:

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.

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]

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]

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.

[SarahCC]

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.

[trishydee]

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

[Belinda Meeker]

  Lunai said:

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

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]

  Lunai said:

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

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]

  Belinda said:

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

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