Dapsone, New to DH side of this fun house

[matthew1989]

Long story short, had endoscopy with biopsy. Show bunting of villi. GI Doc said most likely celiacs. Blood tester were negative. Went a year on gluten free diet, had a repeat scope with biopsy. Intestines were healed and no symptoms. 

Was a bad boy had gluten for 6 months straight with no symptoms then all the sudden developed stomach issues. Not long after that I developed a rash on my knees, head and groin. The itching is intolerable. Went to dermatologist, he preformed biopsy and proscribed some topical steroids and sulfamethoxazole-trimethoprim. 

Been taking the antibiotic and using the cream for 2 weeks, "also back on the gluten free diet for life". Test results came back as dermatitis herpetiformis. Dermatologist called me today to check on my progress with everything. Told him steroids help along but if I don't use them for a day the itching returns and more red spots. 

He wants to put me on dapsone. He took blood work to make sure I should be able to tolerate it well. 

Has anyone had gut symptoms for years like I had then went gluten free for a stint, felt better and healed. Than ate gluten and developed a totally new issue from the consumed gluten such as the rash. I never got the rash until now. And also should I be concerned about dapsone?

[Wheatwacked]

It would be interesting to compare the nutrients in your gluten diet before the one year GFD and your gluten diet that ended in DH.

[matthew1989]

Wheatwacked,  it was pretty much the same. I ate everything and everything prior to my diagnosis then went gluten free for a year, Doc was impressed with the healing on the second scope with no signs of celiacs. The reason I went back to eating gluten was because the way the doctor reached with the fact of my 3 negative blood tests through the course of diagnosis and the healing, made her question if it was celiacs. So I took it upon myself to test the waters. I began eating how I normally did prior to the diet. And for about 6 months I had no stomach issues so I thought damn maybe it's not celiacs and was going to talk to the doc about it and see if it could be something else. Then out of nowhere stuff started to act up again along with the new skin rash issue. The biopsy that came back as DH sealed the deal that I do in fact have celiacs :/. 

 

I have no idea what would have been different for this rash to pop up. It's would be nice to know as well.

[Wheatwacked]

11 hours ago, matthew1989 said:

And also should I be concerned about dapsone?

Dapsone has some potential side effects that to me are scarier than the rash. If you are getting better without it I would wait. Even with the Dapsone it can take 3 months.

"It may take up to 12 weeks before you feel the full benefit of dapsone gel. If your acne does not improve after 12 weeks of treatment, call your doctor."    https://medlineplus.gov/druginfo/meds/a616045.html

https://www.drugs.com/mtm/dapsone.html

[matthew1989]

Thanks for the reply, I'm still itchy but not to bad when I stay on top of it with the cream. Will it get better without meds? As long as I stay gluten free. If it's better for me to use just the topical steroids than to take that dapsone than that's what I'll do.

[Wheatwacked]

"The most bothersome symptoms are itching and burning. Scratching causes the blister to rupture and dry up, but this leaves an area of darkened skin and scarring. A skin biopsy may be taken to see if the rash is dermatitis herpetiformis. The condition will improve after elimination of gluten from the diet, although it may take several weeks to months to see significant improvement."   https://www.uptodate.com/contents/celiac-disease-in-children-beyond-the-basics

[Jill Sherman]

On 1/25/2022 at 11:03 PM, matthew1989 said:

Long story short, had endoscopy with biopsy. Show bunting of villi. GI Doc said most likely celiacs. Blood tester were negative. Went a year on gluten free diet, had a repeat scope with biopsy. Intestines were healed and no symptoms. 

Was a bad boy had gluten for 6 months straight with no symptoms then all the sudden developed stomach issues. Not long after that I developed a rash on my knees, head and groin. The itching is intolerable. Went to dermatologist, he preformed biopsy and proscribed some topical steroids and sulfamethoxazole-trimethoprim. 

Been taking the antibiotic and using the cream for 2 weeks, "also back on the gluten free diet for life". Test results came back as dermatitis herpetiformis. Dermatologist called me today to check on my progress with everything. Told him steroids help along but if I don't use them for a day the itching returns and more red spots. 

He wants to put me on dapsone. He took blood work to make sure I should be able to tolerate it well. 

Has anyone had gut symptoms for years like I had then went gluten free for a stint, felt better and healed. Than ate gluten and developed a totally new issue from the consumed gluten such as the rash. I never got the rash until now. And also should I be concerned about dapsone?

Hi Matthew, 

Regardless of how your diet may have changed through the years, the presence of HD indicates that you have intestinal villi damage again, which your physician can help you treat (elimination diet, pea protein shakes, working with a knowledgeable gluten-free dietitian, etc.). The first line of defense for the itching from HD is Clobetasol Propionate ointment. It is VERY effective at relieving the severe itching and can put you out of that misery. When used in combination with Halobetasol Propionate foam, which will help dry up and eliminate the HD pustules, you can get your HD under control and pretty much eliminated.

Best wishes to you for a healthy recovery!

 

 

 

[trents]

Jill Sherman, did you mean DH rather than HD?

[murray7400]

On 1/25/2022 at 10:03 PM, matthew1989 said:

Long story short, had endoscopy with biopsy. Show bunting of villi. GI Doc said most likely celiacs. Blood tester were negative. Went a year on gluten free diet, had a repeat scope with biopsy. Intestines were healed and no symptoms. 

Was a bad boy had gluten for 6 months straight with no symptoms then all the sudden developed stomach issues. Not long after that I developed a rash on my knees, head and groin. The itching is intolerable. Went to dermatologist, he preformed biopsy and proscribed some topical steroids and sulfamethoxazole-trimethoprim. 

Been taking the antibiotic and using the cream for 2 weeks, "also back on the gluten free diet for life". Test results came back as dermatitis herpetiformis. Dermatologist called me today to check on my progress with everything. Told him steroids help along but if I don't use them for a day the itching returns and more red spots. 

He wants to put me on dapsone. He took blood work to make sure I should be able to tolerate it well. 

Has anyone had gut symptoms for years like I had then went gluten free for a stint, felt better and healed. Than ate gluten and developed a totally new issue from the consumed gluten such as the rash. I never got the rash until now. And also should I be concerned about dapsone?

I’ve had itchy skin and no rash for a month now… i’ve never thought of gluten until now. The itching feels like a little shock then it will itch. Mostly my back, but some everywhere except my face neck or hand and feet. Mostly my torso.

has anyone experienced this

[trents]

2 minutes ago, murray7400 said:

I’ve had itchy skin and no rash for a month now… i’ve never thought of gluten until now. The itching feels like a little shock then it will itch. Mostly my back, but some everywhere except my face neck or hand and feet. Mostly my torso.

has anyone experienced this

DH has a characteristic appearance with little blisters I think. See if you can google it and get a good picture to compare it to the rash you have.

[murray7400]

5 minutes ago, murray7400 said:

I’ve had itchy skin and no rash for a month now… i’ve never thought of gluten until now. The itching feels like a little shock then it will itch. Mostly my back, but some everywhere except my face neck or hand and feet. Mostly my torso.

has anyone experienced this

 

7 minutes ago, murray7400 said:

I’ve had itchy skin and no rash for a month now… i’ve never thought of gluten until now. The itching feels like a little shock then it will itch. Mostly my back, but some everywhere except my face neck or hand and feet. Mostly my torso.

has anyone experienced this

I may have posted on the wrong thread… i’m new on here and trying to figure out how to communicate with others 

[trents]

48 minutes ago, murray7400 said:

 

I may have posted on the wrong thread… i’m new on here and trying to figure out how to communicate with others 

Not necessarily. Do you think you might have dermatitis herpetiformis (DH)? It is classic sign of having celiac disease. With some people, celiac disease manifests itself as DH instead of gut issues. And some have both, I think.

Edited January 29, 2022 by trents

[Russ H]

I used to develop small, individual, intensely itchy hives about the size of a mosquito bite. I used to get them above my knees and on my buttocks, shoulders and hairline. I would have several at any one time but never a herpetiform rash. Some, but not all would blister and crust over. They would come up suddenly, and it would feel like I had been bitten. In fact, for a time I was convinced that we had bed bugs or some kind of insect infestation. I started to get them about 25 years ago but they stopped coming up when I went gluten-free. I didn't connect it at the time, and it might be coincidence, but I suspect it was the beginnings of DH.

[Jamminonthe1]

On 1/29/2022 at 12:50 PM, Russ314 said:

I used to develop small, individual, intensely itchy hives about the size of a mosquito bite. I used to get them above my knees and on my buttocks, shoulders and hairline. I would have several at any one time but never a herpetiform rash. Some, but not all would blister and crust over. They would come up suddenly, and it would feel like I had been bitten. In fact, for a time I was convinced that we had bed bugs or some kind of insect infestation. I started to get them about 25 years ago but they stopped coming up when I went gluten-free. I didn't connect it at the time, and it might be coincidence, but I suspect it was the beginnings of DH.

 

On 1/25/2022 at 10:03 PM, matthew1989 said:

Long story short, had endoscopy with biopsy. Show bunting of villi. GI Doc said most likely celiacs. Blood tester were negative. Went a year on gluten free diet, had a repeat scope with biopsy. Intestines were healed and no symptoms. 

Was a bad boy had gluten for 6 months straight with no symptoms then all the sudden developed stomach issues. Not long after that I developed a rash on my knees, head and groin. The itching is intolerable. Went to dermatologist, he preformed biopsy and proscribed some topical steroids and sulfamethoxazole-trimethoprim. 

Been taking the antibiotic and using the cream for 2 weeks, "also back on the gluten free diet for life". Test results came back as dermatitis herpetiformis. Dermatologist called me today to check on my progress with everything. Told him steroids help along but if I don't use them for a day the itching returns and more red spots. 

He wants to put me on dapsone. He took blood work to make sure I should be able to tolerate it well. 

Has anyone had gut symptoms for years like I had then went gluten free for a stint, felt better and healed. Than ate gluten and developed a totally new issue from the consumed gluten such as the rash. I never got the rash until now. And also should I be concerned about dapsone?

Mathew,

I have celiac sprue and DH.  Dapsone saved me from my symptoms.  I had a lot of gi symptoms in childhood, but after 18, DH was my chief symptom.  Dapsone worked 100 times faster and better than anything else, and it’s generally safe if you don’t have g6pd deficiency, which I believe your doctor has checked.  The itching from the DH is so severe, it was giving me insomnia, and depression.  It’s indescribable to those who haven’t experienced it.  Listen to your doctor and use the dapsone.  It works.  I’ve been on it for 27 years now.  
 

Have a nice day, and good luck. 
 

Kevin in Houston 

[matthew1989]

3 hours ago, Jamminonthe1 said:

 

Mathew,

I have celiac sprue and DH.  Dapsone saved me from my symptoms.  I had a lot of gi symptoms in childhood, but after 18, DH was my chief symptom.  Dapsone worked 100 times faster and better than anything else, and it’s generally safe if you don’t have g6pd deficiency, which I believe your doctor has checked.  The itching from the DH is so severe, it was giving me insomnia, and depression.  It’s indescribable to those who haven’t experienced it.  Listen to your doctor and use the dapsone.  It works.  I’ve been on it for 27 years now.  
 

Have a nice day, and good luck. 
 

Kevin in Houston 

Hey Kevin, I appreciate the response. Yes my doctor has checked me for g6pd, came back negative. I'm glad you ended up figuring it out. My symptoms started at 29, I'm 33 now. DH is new to me. Just had intestinal issues, 3 years into it now the DH. I'm going to start it tonight and see how it goes. I 100% agree with you on the itching. My wife asks me if it feels like poison ivy, "it's worse". No one knows what it's like unless they have DH. Never been so itchy in my life. I can itch till I bleed and the itch is still there! If you don't mind me asking, are you gluten free? And if you are do you still get the rashes? My doc said if I remain gluten free I won't need the drug long term. He did say it may take a while for the skin to heal vs the intestines. Is this true with others that have DH like yourself?

 

Thanks a bunch, have a good day.

Matt

[Scott Adams]

Dapsone does work well for DH, but it does have some pretty serious side-effects, and for some they can be lifelong, so be sure to talk to your doctor and read up on it before using it. I've heard that over the counter Ben-Gay helps, but I never tried that. I think the best way to deal with DH is a 100% gluten-free diet. I only had DH on one spot on the back of my left thumb, and a really bad sunburn which I got fishing at a high attitude lake cured it, but I don't recommend this approach!

[L.P.]

On 1/29/2022 at 10:13 AM, trents said:

DH has a characteristic appearance with little blisters I think. See if you can google it and get a good picture to compare it to the rash you have.

This is the first time responding to this site.  Yes,  I too am experiencing a tiny shock, then itching, then little postures - back and torso.  Glad to hear there is an ointment besides dapsone.  I will research it.  Couldn’t figure out these little shocks.  Diagnosed Celiac since 2013.  Repeat endoscopy and colonoscopy this year.   Villi clear.

[Scott Adams]

Hi @L.P., welcome! Are you currently gluten-free, and did you get a blood screening for celiac disease?

[L.P.]

3 hours ago, Scott Adams said:

Hi @L.P., welcome! Are you currently gluten-free, and did you get a blood screening for celiac disease?

Blood work and biopsy confirmed.  Very strict with my gluten-free diet.  7years. Once in a while accidentally glutened (cross contamination).  I am confused that I am getting these blisters, pin pricks and itching. Any help would be appreciated.  L.P.

[matthew1989]

15 minutes ago, L.P. said:

Blood work and biopsy confirmed.  Very strict with my gluten-free diet.  7years. Once in a while accidentally glutened (cross contamination).  I am confused that I am getting these blisters, pin pricks and itching. Any help would be appreciated.  L.P.

 have you had your rash or blisters biopsy? That's the only way to know it's DH. Could be something else if not. At first when mine popped up out of the blue I thought it was due to changing laundry detergents. I was sadly mistaken.

[trents]

19 minutes ago, L.P. said:

Blood work and biopsy confirmed.  Very strict with my gluten-free diet.  7years. Once in a while accidentally glutened (cross contamination).  I am confused that I am getting these blisters, pin pricks and itching. Any help would be appreciated.  L.P.

Do you get them when you get cross contamination?

[matthew1989]

Just now, trents said:

Do you get them when you get cross contamination?

Not sure yet I ate gluten for 6 months with no issue then out of the blue the rash. I was gluten free prior to the 6 month gluten binge. I think it's going to take some time before I can answer that question for you ha.

[matthew1989]

1 minute ago, matthew1989 said:

Not sure yet I ate gluten for 6 months with no issue then out of the blue the rash. I was gluten free prior to the 6 month gluten binge. I think it's going to take some time before I can answer that question for you ha.

From what I have heard very small amounts are needed to cause a reaction so cross contamination would definitely be enough. 

[trents]

It has been said that for some people even an amount of gluten equivalent to a quarter of a grain of rice can produce a reaction.

[Wheatwacked]

On 2/1/2022 at 12:44 PM, Scott Adams said:

I've heard that over the counter Ben-Gay helps

When I had shingles I was given a prescription for a tube of Lidocaine 2.5% and Prilocaine 2.5% Cream, USP. It worked great. BENGAY® 4% Lidocaine Cream Tropical Jasmine costs less than $10, and there are other lidocaine and prilocaine products up to 5% available without prescription. 10% requires prescription.

https://my.clevelandclinic.org/health/drugs/18413-lidocaine-prilocaine-cream