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

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
    3. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    5. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.