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In Tears Over Dh

linuxprincess

By linuxprincess
in Dermatitis Herpetiformis

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linuxprincess Rookie
linuxprincess
Posted

:(

I've been gluten free for a year this month. I've been dairy free for six months. I've checked my toothpaste, deodorant, shampoo, bar soaps, laundry detergent, lotions and mouthwash. I've stopped wearing make up and perfume. I even checked all the cleaning agents in my house to clear them. The last time I got CCd was last month - twice. I ate a Ricola and a separate incident of drinking a Vitamin Water containing calcium lactate and magnesium lactate.

I am still having horrible DH outbreaks. Daily eruptions down the outside of my right thigh, across both shoulder blades, my left elbow, lower stomach, on top of my pubic bone, the tops of my toes and on the right side of my face. I've got a prescription steroid cream that I use when it gets horribly bad, but it only helps for a few hours then the itching just comes back again, so I usually try to skip it except to help me sleep.

I live with my boyfriend who does eat gluten and we are extremely careful about cross contamination in the kitchen. Separate utensils, separate toasters, even a separate plate for him to use while broiling toast or somosas in the oven. He does not kiss me when he's eating. We do not drink after each other (our water bottles are labeled), he also uses gluten free toiletries to avoid getting any on me.

I know that I am incredibly sensitive to gluten because when I changed razors, both of my legs became so swollen and itchy that I instantly knew that's what it was.

So why am I still breaking out in horrible rashes?

I've narrowed it down to a few possible suspects:

1 - Cat food or litter dust. My cat also licks me, but I don't break out where he licks me. Do I really need to try to switch them to a gluten free diet for my sake? Is that even fair? They are not and will not be outside cats so that's out of the question.

2 - My boyfriend. Sad as it is, what if I still get glutened from him somehow?

3 - Community washer and dryers. Would the residue from other apartment residents' soap and fabric softener be the culprit?

If anyone could be of assistance on where I could go from here - that would be amazing. Maybe another food that could trigger the same DH like milk and wheat? I know that iodine helps the reactions, but I use sea salt with no iodine. Is there ever a time when DH just doesn't go away no matter how much steroids you use and how gluten free you are? Can smelling gluten make you break out?

I know there are other meds you can take, but I do not like the risky side effects of them and refuse to take something that will kill anther part of my body just to put me at ease. Also another drug can cause eye problems and as I've had a ruptured retina in the past, I cannot use it for obvious reasons.

I'm really at my wits end here over this stupid rash. I've been itching for years and it's not only destroyed my skin, but it's destroying my sanity now, too.

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flourgirl Apprentice
flourgirl
Posted

I wish I knew what to tell you to help. I know when I had outbreaks, the rashes lasted for weeks before they started to subside, so it's possible that your skin is still reacting to your last glutening. You really do need to be careful with your pets, also. Check the ingrediants in the litter...as well as their food. You may have to wear impermeable gloves to handle the food and litter and scrub thoroughly afterward. If it's possible, train your cats to not lick you, or at least wash after.

Sounds like you are very careful otherwise. As for me...I've been gluten-free for 14 months. I finally have a handle on the DH, but still have other issues, which may or may not be Celiac related. Some of us take a long time to get better. Hopefully you will feel better soon. Good luck to you

ravenwoodglass Mentor
ravenwoodglass
Posted
:(

So why am I still breaking out in horrible rashes?

I've narrowed it down to a few possible suspects:

1 - Cat food or litter dust. My cat also licks me, but I don't break out where he licks me. Do I really need to try to switch them to a gluten free diet for my sake? Is that even fair? They are not and will not be outside cats so that's out of the question.

2 - My boyfriend. Sad as it is, what if I still get glutened from him somehow?

3 - Community washer and dryers. Would the residue from other apartment residents' soap and fabric softener be the culprit?

If anyone could be of assistance on where I could go from here - that would be amazing. Maybe another food that could trigger the same DH like milk and wheat? I know that iodine helps the reactions, but I use sea salt with no iodine. Is there ever a time when DH just doesn't go away no matter how much steroids you use and how gluten free you are? Can smelling gluten make you break out?

I know there are other meds you can take, but I do not like the risky side effects of them and refuse to take something that will kill anther part of my body just to put me at ease. Also another drug can cause eye problems and as I've had a ruptured retina in the past, I cannot use it for obvious reasons.

I'm really at my wits end here over this stupid rash. I've been itching for years and it's not only destroyed my skin, but it's destroying my sanity now, too.

The most likely culprit in light of how careful you are is the cat food and/or litter. DH is an antibody reaction that begins after injestion in even small amounts. It is not an allergic reaction which is why you don't break out where he licks you. I never thought of gluten in pet foods and litters as a problem until I continued to have outbreaks. I also used the same can opener for pet and people food, they are now color coded.

You will not be depriving your kitties at all by switching them to a gluten free food. In fact they will thrive and your litter box will be much nicer to clean. How many cats have you found sitting in a wheat or corn field chowing down? They don't need grain although my kitties and dog tolerate foods with rice okay. My kitties are much healthier and happier and my little dogs skin issues have resolved. You may want to try some thing like Innova Evo, Orgins or another grainfree brand. Most give sample packets or have small bags available to try. They are a bit expensive but my pets 'free feed' with their dry food and much less makes them happy. When you do switch mix half old and half new for the first week and then decrease the old over the next week. Some pets don't like to have their food changed and this helps with any possible problems from not liking to change.

I don't think the washer residue would be an issue and it sounds like you are your boyfriend are being as cautious as is humanly possible. I do hope you are able to find and eliminate the cause soon.

linuxprincess Rookie
linuxprincess
Posted
  • Author

I've decided that I'm cutting out iodine because that is my next logical progression to figure this out. After doing a little digging on the information superhighway, I discovered that seaweed, especially kelp, is very high in iodine. What type of soap AND shampoo am I using? Sea Kelp. Perfect. I loved that shampoo... * le sigh *

I'm going all the way on this and cutting out anything with salt in the label. I'm really hoping that this will help things out! This evening, as a matter of fact, I skipped the bath salts and was able to stay in the tub longer than 10 minutes - I'm usually jumping and itching and having a bad time.

^_^ Hoping this works out!

Mike M Rookie
Mike M
Posted

I've decided that I'm cutting out iodine because that is my next logical progression to figure this out. I

[/quote Iodine is a biggie,also we switched to canned Nine Lives cat food for our cats (these tested gluten free with a home test kit). The only dry Dog food that we have had any luck with is Science Diet (sensitive skin) has a minute amount of gluten in it (less than ten parts per million) Also, are you consuming any vinegars? Lots of the vinegars have some level of gluten and this includes salad dressings with vinegar, some mustards, pickles, some ketchups ect.ect. All the best Mike

linuxprincess Rookie
linuxprincess
Posted
  • Author

harp1 Apprentice
harp1
Posted

Patricia,

Coming from another angle and it's possible folks have already said these things or you are doing them. When i was unbearably bad it was recommended I swab the itchy area with hydrigen peroxide, I would also carry alcohol swabs when I was out and swab the area on my scalp instead of itching it. DP is a virus (hope I remember correctly) and the peroxide kills it temporarily. When I couldn't sleep I would put "No More Tears" baby shampoo on - it would deaden the area enough to where I could sleep. I still only shampoo with Head and Shoulds (which also kills the virus). I'm told DH is the last to heal in the celiac recovery healing process. Wishing you the best :rolleyes:

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ang1e0251 Contributor
ang1e0251
Posted

I have only had a recurrance of DH once in the year I've been gluten-free. I was having a coffee once, six days a week with syrups with caramel coloring in them. Even though they should not have gluten, I stopped reacting when I stopped using those syrups with the coloring.

  • 3 weeks later...
linuxprincess Rookie
linuxprincess
Posted
  • Author

Just wanted to follow up on this thread with a new discovery of sorts....

The gluten was in a smoking wrap. For some reason that never crossed my mind, but I stopped using that particular brand on a fluke and haven't had major problems since. I'm still a bit itchy, but I'm not expecting it to all be out of my body at once either. I tested my theory, too. Laid off the particular brand for about a week and then went back to it and had a reaction within 10 minutes of smoking.

Glad to have things narrowed down a bit, but still struggling with the vinegar and iodine situation.

Thanks again to everyone - you make this board awesome!

FranDaMan Apprentice
FranDaMan
Posted

Smoking Wrap?

kbtoyssni Contributor
kbtoyssni
Posted
Smoking Wrap?

I think she means there was gluten in the glue that holds the cigarette together. Some brands do contain gluten.

linuxprincess Rookie
linuxprincess
Posted
  • Author

Various papers contain gluten, but some use a tree gum that is gluten free or use a sugar based glue that is gluten free. Some cigars (Optimo, Phillies, Dutch Masters, etc) contain gluten somewhere, but I haven't gotten a straight answer from the company as of yet. Most will tell me that they contain no glues, but I'm having a reaction within 15 minutes or so of smoking.

Just to clarify, by smoking wrap I did mean cigarette papers and cigars.

  • 2 weeks later...
DebNC84 Apprentice
DebNC84
Posted
I've decided that I'm cutting out iodine because that is my next logical progression to figure this out. After doing a little digging on the information superhighway, I discovered that seaweed, especially kelp, is very high in iodine. What type of soap AND shampoo am I using? Sea Kelp. Perfect. I loved that shampoo... * le sigh *

I'm going all the way on this and cutting out anything with salt in the label. I'm really hoping that this will help things out! This evening, as a matter of fact, I skipped the bath salts and was able to stay in the tub longer than 10 minutes - I'm usually jumping and itching and having a bad time.

^_^ Hoping this works out!

i hope my reply helps you - I've not read through everyone's replies... maybe this is repetitive. I have DH and I understand the insanity.. believe me! I have been mostly gluten-free for almost two years with the occasional accidental glutening at first. I found out that it takes up to two years for the DH to clear while on a strict gluten-free diet. SO ABSTAINING FROM FOODS WITH SALT ADDED IS SMART. and definately no sea salt - my last episode with DH lasted for several months and it was brought on by my Celtic Sea Salt - I just didn't think it would be a problem to add it into my diet after been gluten-free for 1 1/2 years.. but it was a bad idea at that time. WHAT REALLY GRIPES ME IS, COMPANIES ARE NOT REQUIRED TO LIST IODIZED SALT AND NON-IODIZED SALT! how crazy is that! oh well, maybe someday. I use a cream called Clobex on my DH and it helps it clear faster with not so much scarring. ask your doctor for it - it's not cheap but it works on the itch and the bumps. Also this might not be very well excepted by some here.. but I will turn my shower on as hot as I can stand it and let the hot water pummel the areas that itch - it will drive you crazy at first - because the itching intensifies for a couple seconds, but it actually calms down the itch after a few seconds - without scratching, which we all know makes things worse. I hope you find relief AND a solution. I'll never forget when the last Dermatologist told me (before I found out that I had DH) that I had excema andI was going to have to learn to live with it. OMG!!! I wanted to jump off a bridge!! LIVE WITH IT!! needless to say I don't go to him anymore - how many people out there are "living with" DH because some quack told them it was excema? unbelievable!

linuxprincess Rookie
linuxprincess
Posted
  • Author
i hope my reply helps you - I've not read through everyone's replies... maybe this is repetitive. I have DH and I understand the insanity.. believe me! I have been mostly gluten-free for almost two years with the occasional accidental glutening at first. I found out that it takes up to two years for the DH to clear while on a strict gluten-free diet. SO ABSTAINING FROM FOODS WITH SALT ADDED IS SMART. and definately no sea salt - my last episode with DH lasted for several months and it was brought on by my Celtic Sea Salt - I just didn't think it would be a problem to add it into my diet after been gluten-free for 1 1/2 years.. but it was a bad idea at that time. WHAT REALLY GRIPES ME IS, COMPANIES ARE NOT REQUIRED TO LIST IODIZED SALT AND NON-IODIZED SALT! how crazy is that! oh well, maybe someday. I use a cream called Clobex on my DH and it helps it clear faster with not so much scarring. ask your doctor for it - it's not cheap but it works on the itch and the bumps. Also this might not be very well excepted by some here.. but I will turn my shower on as hot as I can stand it and let the hot water pummel the areas that itch - it will drive you crazy at first - because the itching intensifies for a couple seconds, but it actually calms down the itch after a few seconds - without scratching, which we all know makes things worse. I hope you find relief AND a solution. I'll never forget when the last Dermatologist told me (before I found out that I had DH) that I had excema andI was going to have to learn to live with it. OMG!!! I wanted to jump off a bridge!! LIVE WITH IT!! needless to say I don't go to him anymore - how many people out there are "living with" DH because some quack told them it was excema? unbelievable!

I'm actually still breaking out and have no clue why - I've not been so valiant about keeping the salt out of my diet, but I'm going cold turkey on that so I"m looking for any improvements. I do the hot shower thing, too. It helps so much for me. I use hot compresses too if things are bad enough. I've itched for almost two years straight and am getting quite ready to not itch for a day or two. I'll have to ask my doc about the Clobex - my steroid cream only helps for a while. :(

DebNC84 Apprentice
DebNC84
Posted
I'm actually still breaking out and have no clue why - I've not been so valiant about keeping the salt out of my diet, but I'm going cold turkey on that so I"m looking for any improvements. I do the hot shower thing, too. It helps so much for me. I use hot compresses too if things are bad enough. I've itched for almost two years straight and am getting quite ready to not itch for a day or two. I'll have to ask my doc about the Clobex - my steroid cream only helps for a while. :(

you HAVE to stop eating processed stuff with added salt!! no bacon , no ham, no chips after awhile from my experience a little won't hurt you but I think you have to deplete the iodine built up in your system. I'm sorry this isn't good news... but I'm pretty sure it will help you... eat only foods that you prepare yourself.

JNBunnie1 Community Regular
JNBunnie1
Posted
I'm actually still breaking out and have no clue why - I've not been so valiant about keeping the salt out of my diet, but I'm going cold turkey on that so I"m looking for any improvements. I do the hot shower thing, too. It helps so much for me. I use hot compresses too if things are bad enough. I've itched for almost two years straight and am getting quite ready to not itch for a day or two. I'll have to ask my doc about the Clobex - my steroid cream only helps for a while. :(

Just a suggestion- I had a breakout all over my thighs and belly, and the only thing I could wear was spandex. It doesn't rub over the skin the way stiffer clothing does, it stretches with you. thought you might be helped a bit during the day by that.

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