DH? treating for scabies after 1mo

[drobs]

hello! in week 5 of what I thought was stress hives which I've had bad before in life .. as these weeks went by they progressed and changed and kept getting worse. 4x antihistamine dose wasn't doing anything. went to allergist, he said not hives and dismissed me. I've been obsessively searching what else it could be, and the two things it has been matching almost exact descriptions of is DH, and scabies. both would equally shock me. went to a dermatologist today and she says could be either, skin scrape showed no scabies but we are treating for that in case as I work in manual therapy, which is the only way I could have gotten scabies, as I'm very very single and have no other people contact.  if it doesn't work,  I go back for biopsy testing next month when insurance kicks in.  so.. question is, do any of these photos look like anyone's DH ? they are from various times over the last month. no crusting aside from the scabbing because of RELENTLESS itching/scratching. the big bumps acted like hives, they went way down if I managed to leave them alone for a few hours. and never appeared in classic scabies spots like webbings, groin, hands or feet. I'm so confused and frustrated 😩 DH seems like such a mystery and having celiac would be so random , but I guess that's how it goes? the itching has been unbelievable, I've been covered in bruises. it's covering both arms, spread the same way on each arm. both sides low back, almost both thighs, and now center back like spine and shoulders. 

anyway,just wondering if these are extremely similar to anyone else's. thanks for reading ! (hopefully these photos work?)

https://ibb.co/bsTrbn9
https://ibb.co/f1y1YFD
https://ibb.co/Yd59Yjz
https://ibb.co/FVVYQJK
https://ibb.co/LQmC2QS
https://ibb.co/6Z6dpDJ
https://ibb.co/xJf98VK

[plumbago]

I don't know if it's scabies, DH or something else, I'm sorry. It looks like it's awful though. Once I was traveling in Mexico and got body-all-over hives and urticaria. I went to three different doctors there, used bottles of calamine lotion. It didn't get better. Then somehow, someone recommended Allegra which was sold freely at the open-air, roadside pharmacies in Mexico, which I bought, and voila it did the trick. I came back to the US and at that time, Allegra was only available by Rx (now it's OTC). Long story and not helpful to you, so apologies. I never did find out what I had, I assume it was something viral, but I'll never know. I just thank God it went away. What I can say from your query is that your dermatologist did not handle your case very well, as you say she/he dismissed you. Yikes. Not cool. Good that your getting a biopsy, but for goodness sake, press them a little harder to figure this out, 'cause it's definitely something.

ETA: Oh, and the other thing is that here in the USA on the East coast, there have been an increased number of cases of hives due to oak mites.

Edited October 8, 2021 by plumbago

[drobs]

the dermatologist was nice, the allergist was the dismissing ahole. the derm is the one treating for scabies just in case, for now. yep I've been through Allegra, Zyrtec, Claritin, even h2 blocker. none of it helped. at least it's def not getting worse the past few days for the first time. your situation in mexico -yikes! maybe it was something you were exposed to there that your system wasn't used to being here. glad it went away! hoping this does as well lol, but it has me very curious and intrigued by DH 

 

 

[trents]

What do you mean by "and having celiac would be so random"?

[drobs]

3 minutes ago, trents said:

What do you mean by "and having celiac would be so random"?

I mean it would be completely out of the blue/unexpected, as I was unaware of having it (IF its DH, that is). but from what I've been reading, that's how it often is discovered, is by sudden DH..? 

[plumbago]

20 minutes ago, drobs said:

the dermatologist was nice, the allergist was the dismissing ahole. the derm is the one treating for scabies just in case, for now. yep I've been through Allegra, Zyrtec, Claritin, even h2 blocker. none of it helped. at least it's def not getting worse the past few days for the first time. your situation in mexico -yikes! maybe it was something you were exposed to there that your system wasn't used to being here. glad it went away! hoping this does as well lol, but it has me very curious and intrigued by DH 

 

 

Yeah, something I was exposed to, but also probably I was under more stressed than I appreciated at the time. Ok, so Allegra is not the cure-all I was sure it was! Glad it's not getting worse, and good luck at the derm. I really have no direct experience with DH, except that I had hand eczema (which still flares but rarely) and my derm at my request did a biopsy which was negative.

[trents]

21 minutes ago, drobs said:

I mean it would be completely out of the blue/unexpected, as I was unaware of having it (IF its DH, that is). but from what I've been reading, that's how it often is discovered, is by sudden DH..? 

DH is a classic expression of celiac disease that afflicts some. If it turns out to be DH then the fact is there is no other cause of DH known besides celiac disease. Celiac disease can manifest itself in the skin or in the gut or both. Many people who have villi damage in the small bowel experience little or no GI distress, at least until the damage becomes profound. They have a large amount of tolerance even though the damage is happening. By the way, you can get a home celiac test kit for $100 if your insurance is a problem with getting testing done.

Edited October 8, 2021 by trents

[drobs]

5 minutes ago, trents said:

DH is a classic expression of celiac disease that afflicts some. If it turns out to be DH then the fact is there is no other cause of DH known besides celiac disease. Celiac disease can manifest itself in the skin or in the gut or both. Many people who have villi damage in the small bowel experience little or no GI distress, at least until the damage becomes profound. They have a large amount of tolerance even though the damage is happening. By the way, you can get a home celiac test kit for $100 if your insurance is a problem with getting testing done.

right, I'm saying DH, and/or Celiac would be a surprise to me. I was unaware of how either could just suddenly appear later in life. hadn't even heard of DH actually! and yes, I just received the at home test kit today   it's something to try at least, for my impatient self. though I have read i think in this forum that often people w DH don't test positive w blood? we'll see 

[trents]

I believe that is true. The antibody blood test is testing for antibodies produced by the immune system attacking what it perceives to be an invading threat to the small bowel lining when gluten is ingested.

[knitty kitty]

@drobs,

Welcome to the forum!  Thanks for joining! 

A DH flare can get worse when we consume lots of iodine.  Iodine is in dairy products, eggs, and shellfish (crustaceans like shrimps and crabs, and mollusks like oysters).  Even iodized salt can contribute to a DH flare.  

Just wondering if you recently consumed any of these foods.  Also curious if leaving off these foods would help you feel better.  

I believe people with DH actually DO test positive in a blood test.  The DH antibodies travel to and collect in the DH sores, but the antibodies are also in the blood.

When I get glutened, I take a Niacin (Vitamin B3) supplement in addition to my B-Complex vitamin.  Niacinamide (a form of Niacin) has been shown to help alleviate the outbreaks.  I find Niacinamide helps stop the itching, too.

"Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide"

https://pubmed.ncbi.nlm.nih.gov/30390734/

🐱

 

[drobs]

thanks Knitty kitty, I'll keep that in mind and will check out the study.  I'm vegan so haven't had any of those foods you've listed, I wonder if it's added in my daily shake thing though , I'll have to look. do the pics look suspect of DH in your opinion? 

[knitty kitty]

1 hour ago, drobs said:

thanks Knitty kitty, I'll keep that in mind and will check out the study.  I'm vegan so haven't had any of those foods you've listed, I wonder if it's added in my daily shake thing though , I'll have to look. do the pics look suspect of DH in your opinion? 

Yes, those spots and the fact that they appear symmetrically on your body make me highly suspicious of DH.  

Glad you're not eating shellfish! Iodized salt gets me breaking out, so I switched to Himalayan Pink salt. 

Do ask your doctor about your Vitamin B12 (Cobalamine) level.  B12 acts as a natural antihistamine and the vegan diet is notoriously low in B12.  

😺

[cristiana]

Hello there,

I'm sorry as I haven't had much time to read this properly and am about to go out again, so forgive me if it isn't applicable in your situation or that I've missed something. 

However, I just wanted to ask if [adult onset] eczema was ruled out?  I have a rash that looks almost like a nettle rash, it gets worse when I itch it, and it has been symmetrical for the most part.  It can get scabby, esp. if I itch at night in my sleep.

My doctor who has a special interest in dermatology managed to diagnose mine without even looking at it, over the phone during lockdown!  My rash isn't where there are creases, webbing etc as you put it.  Mine has been on my scalp, neck, shoulders, belt line, shins, chest.   

The only thing that sorts it is something called Betnovate cream (a strong topical steroid) which I put on either on its own, or if I have had a bath, 20 mins after applying an emollient cream called Adex gel after a shower.  When things are bad two applications a day keeps it under control and then makes it go away.   I can go for weeks and weeks without it being a problem, and then it flares up again.  Heat, cold, friction against clothes during exercise and I think a few foodstuffs seem to cause it.

When I first started treating it I noticed it got a bit itchier for a day or so before the treatment worked and it took a while to find the right emollient for me, so it was a bit trial and error.

My blood tests showed higher than normal eosinophils when I had my first really bad flare, something to look for.

Hope you find some answers!

C

 

 

 

[drobs]

On 10/7/2021 at 11:16 PM, knitty kitty said:

Yes, those spots and the fact that they appear symmetrically on your body make me highly suspicious of DH.  

Glad you're not eating shellfish! Iodized salt gets me breaking out, so I switched to Himalayan Pink salt. 

Do ask your doctor about your Vitamin B12 (Cobalamine) level.  B12 acts as a natural antihistamine and the vegan diet is notoriously low in B12.  

😺

ooh yes love the Himalayan pink salt! thanks for the reminder I actually need more hehe. n yes,  i take b12 a few times a week. and D3, and I've also been reading that these can be low w celiac (or DH). last blood work in January they weren't below threshold but def on the low end. I'll recheck in a few weeks. thank you!

[drobs]

23 hours ago, cristiana said:

Hello there,

I'm sorry as I haven't had much time to read this properly and am about to go out again, so forgive me if it isn't applicable in your situation or that I've missed something. 

However, I just wanted to ask if [adult onset] eczema was ruled out?  I have a rash that looks almost like a nettle rash, it gets worse when I itch it, and it has been symmetrical for the most part.  It can get scabby, esp. if I itch at night in my sleep.

My doctor who has a special interest in dermatology managed to diagnose mine without even looking at it, over the phone during lockdown!  My rash isn't where there are creases, webbing etc as you put it.  Mine has been on my scalp, neck, shoulders, belt line, shins, chest.   

The only thing that sorts it is something called Betnovate cream (a strong topical steroid) which I put on either on its own, or if I have had a bath, 20 mins after applying an emollient cream called Adex gel after a shower.  When things are bad two applications a day keeps it under control and then makes it go away.   I can go for weeks and weeks without it being a problem, and then it flares up again.  Heat, cold, friction against clothes during exercise and I think a few foodstuffs seem to cause it.

When I first started treating it I noticed it got a bit itchier for a day or so before the treatment worked and it took a while to find the right emollient for me, so it was a bit trial and error.

My blood tests showed higher than normal eosinophils when I had my first really bad flare, something to look for.

Hope you find some answers!

C

 

 

 

hi Christiana, eczema hasn't been ruled out yet, I was thinking about it though. honestly would prefer it to be DH because at least then I'd know how to control it. eczema seems to be more unpredictable from what I read. when I go back to the derm I'm sure we will talk about that. thank you for the input. i hope yours stays under control for you!

[cristiana]

18 minutes ago, drobs said:

hi Christiana, eczema hasn't been ruled out yet, I was thinking about it though. honestly would prefer it to be DH because at least then I'd know how to control it. eczema seems to be more unpredictable from what I read. when I go back to the derm I'm sure we will talk about that. thank you for the input. i hope yours stays under control for you!

No problem, drobs.   Eczema seems to take many forms and when I was googling my symptoms I saw some pictures online that looked much worse than mine, or not at all like mine, so I was a bit surprised when I was diagnosed.   I hope you get the easiest to live with diagnosis, but if it is eczema I have to say now I know how to cope with it, I can get on top of the symptoms really quickly.   As I say, sometimes it isn't even there.   If your diagnosis does come back as eczema a tip that I have picked up on line which really seems to work is zero tolerance.  Deal with the smallest outbreak and it really helps to "nip" it in the bud, as it were.    I find between outbreaks that using an emollient after a shower really helps prevent it coming back.   I hardly ever have to use the steroid cream now.

Edited October 9, 2021 by cristiana

[Meggy5]

On 10/7/2021 at 8:05 PM, drobs said:

hello! in week 5 of what I thought was stress hives which I've had bad before in life .. as these weeks went by they progressed and changed and kept getting worse. 4x antihistamine dose wasn't doing anything. went to allergist, he said not hives and dismissed me. I've been obsessively searching what else it could be, and the two things it has been matching almost exact descriptions of is DH, and scabies. both would equally shock me. went to a dermatologist today and she says could be either, skin scrape showed no scabies but we are treating for that in case as I work in manual therapy, which is the only way I could have gotten scabies, as I'm very very single and have no other people contact.  if it doesn't work,  I go back for biopsy testing next month when insurance kicks in.  so.. question is, do any of these photos look like anyone's DH ? they are from various times over the last month. no crusting aside from the scabbing because of RELENTLESS itching/scratching. the big bumps acted like hives, they went way down if I managed to leave them alone for a few hours. and never appeared in classic scabies spots like webbings, groin, hands or feet. I'm so confused and frustrated 😩 DH seems like such a mystery and having celiac would be so random , but I guess that's how it goes? the itching has been unbelievable, I've been covered in bruises. it's covering both arms, spread the same way on each arm. both sides low back, almost both thighs, and now center back like spine and shoulders. 

anyway,just wondering if these are extremely similar to anyone else's. thanks for reading ! (hopefully these photos work?)

https://ibb.co/bsTrbn9
https://ibb.co/f1y1YFD
https://ibb.co/Yd59Yjz
https://ibb.co/FVVYQJK
https://ibb.co/LQmC2QS
https://ibb.co/6Z6dpDJ
https://ibb.co/xJf98VK

YES! This is exactly like my rash that just will not go away! It’s been MONTHS. I found out through a genetic test that I’m allergic to gluten and ever since I’ve been gluten free. It’s hard because there’s SO MANY WAYS for things to get cross-contaminated. Certain detergents.. etc. But my rash is TERRIBLE on both arms(elbow to wrist) and then the backs of both arms. Also on the back of my calves. I can’t find anything that helps. It’s embarrassing- and with my anxiety I just try and hide it and I don’t think that helps either 😩

[trents]

38 minutes ago, Meggy5 said:

YES! This is exactly like my rash that just will not go away! It’s been MONTHS. I found out through a genetic test that I’m allergic to gluten and ever since I’ve been gluten free. It’s hard because there’s SO MANY WAYS for things to get cross-contaminated. Certain detergents.. etc. But my rash is TERRIBLE on both arms(elbow to wrist) and then the backs of both arms. Also on the back of my calves. I can’t find anything that helps. It’s embarrassing- and with my anxiety I just try and hide it and I don’t think that helps either 😩

I'm not aware that genetic testing can establish that you have an allergy. Celiac disease is not an allergy but an autoimmune disorder and the potential for it can be established by genetic testing. But having the genes doesn't necessarily mean you have celiac disease. Many or most who have the genes do not develop celiac disease. There must be a stress triger of some kind in addition to having the genes. Have you been tested for celiac disease apart from the genetic analysis?

[Jamminonthe1]

On 10/7/2021 at 7:05 PM, drobs said:

hello! in week 5 of what I thought was stress hives which I've had bad before in life .. as these weeks went by they progressed and changed and kept getting worse. 4x antihistamine dose wasn't doing anything. went to allergist, he said not hives and dismissed me. I've been obsessively searching what else it could be, and the two things it has been matching almost exact descriptions of is DH, and scabies. both would equally shock me. went to a dermatologist today and she says could be either, skin scrape showed no scabies but we are treating for that in case as I work in manual therapy, which is the only way I could have gotten scabies, as I'm very very single and have no other people contact.  if it doesn't work,  I go back for biopsy testing next month when insurance kicks in.  so.. question is, do any of these photos look like anyone's DH ? they are from various times over the last month. no crusting aside from the scabbing because of RELENTLESS itching/scratching. the big bumps acted like hives, they went way down if I managed to leave them alone for a few hours. and never appeared in classic scabies spots like webbings, groin, hands or feet. I'm so confused and frustrated 😩 DH seems like such a mystery and having celiac would be so random , but I guess that's how it goes? the itching has been unbelievable, I've been covered in bruises. it's covering both arms, spread the same way on each arm. both sides low back, almost both thighs, and now center back like spine and shoulders. 

anyway,just wondering if these are extremely similar to anyone else's. thanks for reading ! (hopefully these photos work?)

https://ibb.co/bsTrbn9
https://ibb.co/f1y1YFD
https://ibb.co/Yd59Yjz
https://ibb.co/FVVYQJK
https://ibb.co/LQmC2QS
https://ibb.co/6Z6dpDJ
https://ibb.co/xJf98VK

Drobs,

What was the verdict?  Seems like DH.  The incessant and relentless pruritis you described is a key indicator.  
 

It took me months to get an answer.  I was 18, and similarly, this is how my Celiac Dx was initially found.

 

 

[Jamminonthe1]

10 minutes ago, Jamminonthe1 said:

Drobs,

What was the verdict?  Seems like DH.  The incessant and relentless pruritis you described is a key indicator.  
 

It took me months to get an answer.  I was 18, and similarly, this is how my Celiac Dx was initially found.

 

 

 

On 10/7/2021 at 7:05 PM, drobs said:

hello! in week 5 of what I thought was stress hives which I've had bad before in life .. as these weeks went by they progressed and changed and kept getting worse. 4x antihistamine dose wasn't doing anything. went to allergist, he said not hives and dismissed me. I've been obsessively searching what else it could be, and the two things it has been matching almost exact descriptions of is DH, and scabies. both would equally shock me. went to a dermatologist today and she says could be either, skin scrape showed no scabies but we are treating for that in case as I work in manual therapy, which is the only way I could have gotten scabies, as I'm very very single and have no other people contact.  if it doesn't work,  I go back for biopsy testing next month when insurance kicks in.  so.. question is, do any of these photos look like anyone's DH ? they are from various times over the last month. no crusting aside from the scabbing because of RELENTLESS itching/scratching. the big bumps acted like hives, they went way down if I managed to leave them alone for a few hours. and never appeared in classic scabies spots like webbings, groin, hands or feet. I'm so confused and frustrated 😩 DH seems like such a mystery and having celiac would be so random , but I guess that's how it goes? the itching has been unbelievable, I've been covered in bruises. it's covering both arms, spread the same way on each arm. both sides low back, almost both thighs, and now center back like spine and shoulders. 

anyway,just wondering if these are extremely similar to anyone else's. thanks for reading ! (hopefully these photos work?)

https://ibb.co/bsTrbn9
https://ibb.co/f1y1YFD
https://ibb.co/Yd59Yjz
https://ibb.co/FVVYQJK
https://ibb.co/LQmC2QS
https://ibb.co/6Z6dpDJ
https://ibb.co/xJf98VK

Also,

If DH is your Dx, dapsone is the Rx.  Cream, vitamins, and antihistamines just won’t get you where you want to go.  I swear it started noticeably working within hours of my first dose, and I had been suffering for months- scratching in public like some kind of. . .
 

Good luck.  

[Anniehall]

On 10/7/2021 at 8:30 PM, trents said:

DH is a classic expression of celiac disease that afflicts some. If it turns out to be DH then the fact is there is no other cause of DH known besides celiac disease. Celiac disease can manifest itself in the skin or in the gut or both. Many people who have villi damage in the small bowel experience little or no GI distress, at least until the damage becomes profound. They have a large amount of tolerance even though the damage is happening. By the way, you can get a home celiac test kit for $100 if your insurance is a problem with getting testing done. 

To me it looks like eczema. Have you tried hydrocortisone and not scratching? Although I just read back and you said the derm said it's not so I don't know. 

 

[TracyDee]

On 10/7/2021 at 5:05 PM, drobs said:

hello! in week 5 of what I thought was stress hives which I've had bad before in life .. as these weeks went by they progressed and changed and kept getting worse. 4x antihistamine dose wasn't doing anything. went to allergist, he said not hives and dismissed me. I've been obsessively searching what else it could be, and the two things it has been matching almost exact descriptions of is DH, and scabies. both would equally shock me. went to a dermatologist today and she says could be either, skin scrape showed no scabies but we are treating for that in case as I work in manual therapy, which is the only way I could have gotten scabies, as I'm very very single and have no other people contact.  if it doesn't work,  I go back for biopsy testing next month when insurance kicks in.  so.. question is, do any of these photos look like anyone's DH ? they are from various times over the last month. no crusting aside from the scabbing because of RELENTLESS itching/scratching. the big bumps acted like hives, they went way down if I managed to leave them alone for a few hours. and never appeared in classic scabies spots like webbings, groin, hands or feet. I'm so confused and frustrated 😩 DH seems like such a mystery and having celiac would be so random , but I guess that's how it goes? the itching has been unbelievable, I've been covered in bruises. it's covering both arms, spread the same way on each arm. both sides low back, almost both thighs, and now center back like spine and shoulders. 

anyway,just wondering if these are extremely similar to anyone else's. thanks for reading ! (hopefully these photos work?)

https://ibb.co/bsTrbn9
https://ibb.co/f1y1YFD
https://ibb.co/Yd59Yjz
https://ibb.co/FVVYQJK
https://ibb.co/LQmC2QS
https://ibb.co/6Z6dpDJ
https://ibb.co/xJf98VK

Try Seson Blue dandruff shampoo in the shower. Shower as normal, lather up body and leave on for 5 minutes. It will tingle a bit. I buy Equate brand from Walmart. It won’t hurt you. It’s worth a shot. If it works, you may have tinea like rash. Some people have a certain PH of their skin that tinea likes. My daughter and husband get this.  I have a different PH in my skin. 
Good Luck! 😍

[TracyDee]

Another possibility is you could be allergic to your soap or lotion? Parabins, sulfates, phosphates. I break out similar if I use self tanners. Try Calagel Tecnu gel. Relieves itch and pain from poison oak, insects bites etc. has antihistamine, pain relief, antibacterial etc.