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How To Get Relief From Itching?

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Hi all,

I was wondering if anyone has any suggestions to relieve my itching?

I am new to DH and tonight the itching is as bad as ever.

Thanks in advance,

Di

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I feel your pain - literally. Unfortunately there isn't a lot that can be done. I've noticed that the things that worked best for me were cold compresses and white vinegar. Only very temporary relief, but sometimes even 15 minutes without scratching can be a godsend. I would normally take a cold shower at night because mine was always worse in the evening. It does get better though. I've been gluten free for a few months and now only get a few random outbreaks that don't itch as bad. If you get it on your elbows like I did, keep them very moisturized - I found that helped a little and made the outbreaks heal faster. Good luck to you!!!

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Hello all, I am self-diagnosed, so take this for whatever it is worth.

I have finally scheduled a derm appt., for sometime in August. I have taken pics of my rash (es) in the unlikely event they are gone by the time my appt comes around. I researched the net & found a derm dr that I know is familiar with DH. Also, my mom, a 30+ yr, biopsied Celiac, asked her Dr. For a derm dr recommendation, and it is for the same dr., so we shall see. If I don't have DH, I will eat my hat.

Remember too, DH's other name, "D multiformis"...which more accurately describes my rashes.

About 25 yrs ago, I came up with what I thought was a spider bite, on my hip. About 6 months later, damn if that spider didn't bite me again in the same place! The 3rd time, I showed it to my derm, who was treating me for adult acne...he took one look at it and said it was Herpes (no biopsy, btw). Six doctors have seen it since then...all said either shingles or Herpes (KC & Denver).

I went on the gluten-free diet, as a last resort last fall; I was dying. Rash gone, poof! (it came back with a vengence twice on my back only when I accidentally ingested G.) all other bad symptoms resolved, like a miracle.It was the head of our local Celiac org that told me about DH, after I told her my "herpes" went away.Gee, I sure am glad I took the megadoses of Valtrex for so many years...which never worked anyway.

4 months goes by, I slowly begin getting sick again. Same rash returns, only this time on my hands!

Find TRITICALE in my parrots sprouted seed diet, that I am rinsing in jars, 2-3 x a day, oodles of wheat in the pelleted diet they eat too. Start wearing gloves, not much help. I realize just opening the large seed & pellet containers (omg, G dust inhalation) is making me sick; mask not much help either. Changing a parrots diet is HELL. Then I figure out there is a multitude of G nanoparticles all over my house...try spring cleaning when you feel gluten-sick! I may as well have been living in a bakery.

Well, finally, I have a nervous break down, have a friend come over and get all the seeds OUT. That has helped tremendously.

Next, I am scraping wallpaper off my ceiling in an old bedroom...dust is STINGING my forehead. My daughter is calling me a lunatic. I look up wallpaper paste ingredients. Oh, hell. My poor hands are worse now. Then, like a moron, I change DRYER SHEETS. I am at the health food store, think, oh I need dryer sheets, these here should be healthier for me....NOT. I can't figure out why the rash has spread to all over my body. I am going to scratch off my skin and check into the nut house. I took a long warm bath, went to lie down on the bed, and my body began stinging all over.Then I realize...the dryer sheets! I look at the ingredients, which are several hugely long chemical names I cannot decipher, but in parentheses, it reads (derived from plant sources)! So I look on their website (7th generation) and it says since they don't test for G so they cannot say, but the maxi-pads DEFINITELY CONTAIN GLUTEN. Paper products? You mean like the PAPER dryer sheets? Like I needed to re-wash the 400 loads of laundry? But I am, and it is helping a lot.

Meantime, I want to have a little talk with all the doctors who say G cannot be aborbed thru the skin, if u know what I mean.

But about halfway thru this nightmare, I remembered a product that I have, that is useful for things like spider bites, even stomachaches, when taken internally...it is ultra-venilated french green illite clay. I researched it a few years ago, trying to get rid of my HERPES (which I do not believe I have). It is a dry powder, I mix with water, and make a paste, put a thick application on my rash and cover with saran wrap (important to keep moist). Voila, itch gone and rash cleared up as if 3-4 days have passed.

I could not live without it, buy it online.

There are many different types of clay, and you can email me for more info. I have used another type, came already hydrated, and it stung my skin, so I stick with what works.

Sorry so long...but I felt this was necessary in order to be of help.

Ps- I have no interest in any clay co., just a (unofficial) DH sufferer in KC.

Keep your fingers crossed for my derm appt, in August.

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Wow...that is a DH nightmare.

I would just like to say iodized salt can keep the antibodies active in DH lesions. I had to avoid it for 3 months to heal my sores. Read about the iodine/gluten connection in DH in this section.

For the horrible itching I used a pain relieving ointment with Benzocaine -walgreens brand. It provided temporary relief...up to 30 minutes. Ice compresses helped a little. Never tried the clay, but I would if I got it again.

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I didn't search widely, but the only things I found very useful were antibiotic creams that moisturised and perhaps had an antibiotic effect.

Probably don't need to say this, but the best long term solution is to be ever more ruthless in eliminating sources of gluten. I'm not very sensitive to environmental sources, like flour dust, etc. , and some apparently risky products don't seem to have an effect, but others will set off a blazing response.

Sometimes I found that anti-bac hand gel to be slightly helpful. No idea why, perhaps there is a bacteriological component.

Best wishes. With patience it WILL get better!

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AAATRGGGHHHHGGGHGHH...THE RASH IS STILL ALL OVER, now on my upper back of legs :o

Okay, do you guys think my CIGARETTES are making my rash worse? I did do some cleaning in the bird room a couple of days ago...that is really when I noticed this new crop of rash. It is summer, and I go barefoot around the house or in flipflops but maybe I should see if NASA has some old spacesuits they can let me have.

I have a bunch of nicotine gum. Does anyone know if its gluten-free? The longer I have been gluten-free the more sensitive I become it seems.

HELP

I started using HEMPZ shampoo, etc...they say Glutem Free on the bottles?

Maybe I better contact them.

Omg this is unreal. If I go to the pool, will that help me?

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I was wondering if anyone has any suggestions to relieve my itching?

A medication called Dapsone will do it. I can't imagine why your doctor didn't prescribe it while giving you your diagnosis. My experience was that itching stopped within 24 hours and blisters healed within a week.

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My primary care doc and my physical therapy doc would not give me the dapsone.

Looks like I will have to wait until I see the dermatologist in mid-August :angry:

Perhaps since I am self-diagnosed at this juncture, the dr.'s are too scared to prescribe the dapsone given the bad side-efx of the drug.

At any rate, I am taking tepid clay-baths daily and that is helping a lot, plus getting all gluten containing topical products out of the house.

I still have yet to spring-clean-vacuum and mop since changing my birds over to Gluten-free diet, and I think that will make the difference in the last of the rash clearing.

Whew, what a nightmare, but the rash is better so that's good. :)

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As an earlier poster suggested, it may be that you're ingesting iodine. For many of us, if iodine is present, the lesions simply will not heal....and it makes them really itch for me. Make sure that you only use non-iodized salt, avoid all dairy except organic, seafood, and asparagus. After a while, you can try to reintroduce them into your diet...but be prepared for a bad reaction. In the end, you'll know how much iodine you can tolerate.

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Thank you guys for the tips. I am trying to limit my iodine intake too.

I have used sea salt in place of iodized salt for many years now. Only now I am trying to limit my use of the sea salt, since it too contains iodine from what I have read.

I love salt, seafood, spinach and iodine-rich foods so this is a struggle. I have inflammatory arthritis and several other health problems (from undiagnosed celiac) and it seems the gluten-free vegan diet works best for me. It's just that the vegan part of that diet is really hard for me and I have not been strictly adhering to it.

I just had a depo-medrol shot on Wed.,which I have read can help with DH. It helps my RA a lot, and that was why I take those 2-4 x a year.

I noticed today that the tiny blisters around my ankles look diminished so maybe the shot is helping my rash after all :)

I still ache all over, which is a sign that I need to get back to the vegan diet.

When I can afford it, I will go to a nutritionist. Maybe the new dermatologist can recommend one for me.

Thanks again everone for all your support. I seriously don't know what I would do without all of you :)

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I just read through these post's and felt what I could add might help. I was diagnosed with Diabetes Type 1 as a nine month old baby and have lived with it for 46+ years. I've been diagnosed with Fibromyalgia over eleven years ago and Hypothyroidism over 18 years ago. All are doing well. I had a terrible accident over nine years ago and have had three surgeries because of that, I live in constant pain. I was diagnosed with Celiac Sprue Disease last year, what a new experience!!

This article caught my attention as I think my teenage son (age 17)and I both suffer from a constant rash. His is located on his hands, fingers, and elbows; mine is on my right elbow and left hip. Severe itching and small bumps that scab over if scratched....a doctor felt this was just a fungal infection and recommended using Vick's Chest Rub on it....to smother it. Guess what! It worked on my elbow, took it completely away and now is slowing down the development of the rash on my hip.

Note: the doctor said it could take up to two weeks to smother it out and it should be used morning and night (2 app's. a day that is). It started to eliminate my son's, but being a teenager he stopped using it and is now ready to use it again. He show's sign's of Celiac, but since we don't have medical insurance for him (lost it due to my accident) I just have him it what I eat....most of the family does now. He's put on weight, not so tired anymore, not as angry, quit complaining about indigestion, etc.

Hope this note helps other's! Good luck!

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Hello all, I am self-diagnosed, so take this for whatever it is worth.

I have finally scheduled a derm appt., for sometime in August. I have taken pics of my rash (es) in the unlikely event they are gone by the time my appt comes around. I researched the net & found a derm dr that I know is familiar with DH. Also, my mom, a 30+ yr, biopsied Celiac, asked her Dr. For a derm dr recommendation, and it is for the same dr., so we shall see. If I don't have DH, I will eat my hat.

Remember too, DH's other name, "D multiformis"...which more accurately describes my rashes.

About 25 yrs ago, I came up with what I thought was a spider bite, on my hip. About 6 months later, damn if that spider didn't bite me again in the same place! The 3rd time, I showed it to my derm, who was treating me for adult acne...he took one look at it and said it was Herpes (no biopsy, btw). Six doctors have seen it since then...all said either shingles or Herpes (KC & Denver).

I went on the gluten-free diet, as a last resort last fall; I was dying. Rash gone, poof! (it came back with a vengence twice on my back only when I accidentally ingested G.) all other bad symptoms resolved, like a miracle.It was the head of our local Celiac org that told me about DH, after I told her my "herpes" went away.Gee, I sure am glad I took the megadoses of Valtrex for so many years...which never worked anyway.

4 months goes by, I slowly begin getting sick again. Same rash returns, only this time on my hands!

Find TRITICALE in my parrots sprouted seed diet, that I am rinsing in jars, 2-3 x a day, oodles of wheat in the pelleted diet they eat too. Start wearing gloves, not much help. I realize just opening the large seed & pellet containers (omg, G dust inhalation) is making me sick; mask not much help either. Changing a parrots diet is HELL. Then I figure out there is a multitude of G nanoparticles all over my house...try spring cleaning when you feel gluten-sick! I may as well have been living in a bakery.

Well, finally, I have a nervous break down, have a friend come over and get all the seeds OUT. That has helped tremendously.

Next, I am scraping wallpaper off my ceiling in an old bedroom...dust is STINGING my forehead. My daughter is calling me a lunatic. I look up wallpaper paste ingredients. Oh, hell. My poor hands are worse now. Then, like a moron, I change DRYER SHEETS. I am at the health food store, think, oh I need dryer sheets, these here should be healthier for me....NOT. I can't figure out why the rash has spread to all over my body. I am going to scratch off my skin and check into the nut house. I took a long warm bath, went to lie down on the bed, and my body began stinging all over.Then I realize...the dryer sheets! I look at the ingredients, which are several hugely long chemical names I cannot decipher, but in parentheses, it reads (derived from plant sources)! So I look on their website (7th generation) and it says since they don't test for G so they cannot say, but the maxi-pads DEFINITELY CONTAIN GLUTEN. Paper products? You mean like the PAPER dryer sheets? Like I needed to re-wash the 400 loads of laundry? But I am, and it is helping a lot.

Meantime, I want to have a little talk with all the doctors who say G cannot be aborbed thru the skin, if u know what I mean.

But about halfway thru this nightmare, I remembered a product that I have, that is useful for things like spider bites, even stomachaches, when taken internally...it is ultra-venilated french green illite clay. I researched it a few years ago, trying to get rid of my HERPES (which I do not believe I have). It is a dry powder, I mix with water, and make a paste, put a thick application on my rash and cover with saran wrap (important to keep moist). Voila, itch gone and rash cleared up as if 3-4 days have passed.

I could not live without it, buy it online.

There are many different types of clay, and you can email me for more info. I have used another type, came already hydrated, and it stung my skin, so I stick with what works.

Sorry so long...but I felt this was necessary in order to be of help.

Ps- I have no interest in any clay co., just a (unofficial) DH sufferer in KC.

Keep your fingers crossed for my derm appt, in August.

Good luck honey.

I sure do feel your pain.

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Don't forget to avoid fried foods, ie.....FRENCH FRIES!

Restaurants are supposed to fry them seperately but when they get real busy thet do what they have to do and that means frying breaded chicken etc. in the grease. I recently read about a boy whose mom was very careful about his diet, but she bought him french fries one day and BAM! His problems came back immediately.

And I just found out tonight that soy sauce has wheat product in it.

No more Hibachi for me!

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Hi,

I know a lot of people prefer not to medicate, but I have found that if I inadvertently get gluten in, my only option for a nights sleep is Phenergan 10mg. It is inexpensive & very effective, just note that it does not only make you drowsy, it knocks you for 6. But that's the point isn't a night without braking skin ;-)I was told to try bathing in Epsom Salts, it sometimes works other times not. Hope that help.

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Tremendously.

And I just happen to have some of that from when my Mom was sick I hope it's not expired.

Newbies like me would be lost without the help of people like you.

Thanks

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I use a homemade cream I found on the Chronic Urticaria website:http://www.chronichives.com/pages/cromolyncream.htm

I have not been diagnosed with DH - appt. is Sep. 8; however, I have had my rash for apx. 2 years now. I use the cream and while it isn't perfect, its better than anything else most days.

I did discover that plain old Vaseline is the best thing for my rash after the 3rd day of a major outbreak - when the sores are healing. It keeps it lubricated and protected and speeds recovery along for me. I use a layer of Vanicream (without Cromolyn) to moisturize, then a layer of Vaseline when I am "recovering". I use layers of the homemade cream/Vaseline during the flare phase (sometimes 6+ layers a day).

Also, I've been on corticosteroids (injections and creams) - the cream (Desonide); though mild, was masking the "look" of my rash and also interfered with the healing... I was left with a ringworm-looking "scab". Now I'm off the corticosteroids (that was an eventful week) and my rash looks more typical during an outbreak. It also heals faster.

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Roobos-red bush tea...bathe affected areas in it--it releaves itching & inflammation without stinging! Drink it too!!! Good luck! X

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Thank you all. Lots of good ideas. I am still itching.. still feels like toxins trying to get out but at least I am getting some sleep etc

xoxoxooxoxooxoxooxooxoxooxoxoxoxoxooxoxoxoxo

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I was perscribed Dapsone by my dermatologist and now my doctors will rewrite my perscriptions for me.

GOING gluten-free WILL NOT ALWAYS PREVENT DH!!!!! Many doctors will tell you that and it is total bull! I did the elimination and it's just not true. Stress can even cause a breakout; no one is 100% sure what causes DH, or even why dapsone works.

Some doctors are hesitant about perscribing this rare medication because it can cause nerve damage and death (my doctor had me tested to check my compatibility). WHEN ON DAPSONE REGULARLY, YOU MUST GET A MONTHLY BLOOD TEST as it can suddenly start killing your white blood cells, regardless of genetic compatability.

I have been on dapsone for 5 years (only as needed); before dapsone, I would wake up covered in my own blood, scratching until bleeding, being COVERED (even around my "unmentionables", which was hell on Earth). I am now covered in old scars.

DH IS NOT ALWAYS PREVENTABLE (I'm Canadian, so I just went to doctor after doctor, for free, until someone knew something because they did a paper on it at medschool)!!!

-------------

ACCORDING TO MY DOCTOR:

DH affects 1/4 of celiacs, and about 90% of those individuals will be healed (while being gluten-free) once they take dapsone. For that other 10%, most of them will have flare ups related to stress or other factors (like physical wheat contact, for those of us who can't touch it) and will ony need to take dapsone AS NEEDED (50 pills can last me a year).

------

MANY OLDER DOCTORS ARE UNFAMILIAR WITH THIS MEDICATION. They either don't know it exists, or they only know its use for treating leprosy. It only "accidentally" works for DH for no known reason.

 

Some doctors also think DH from celiac is BS (probably because it's rarely treated and seen, because it comes in flareups). I had one doctor at a walk-in so excited when he saw "dapsone" on my sheet. He asked me to come back, just so he could see what a flareup looked like for his own professional knowledge. 

 

Moral: DAPSONE IS THE HOLY GRAIL OF DH FIXES.

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