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Is This A Dh Blister?

missybean

By missybean
in Dermatitis Herpetiformis

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missybean Apprentice
missybean
Posted

So I went to the dermatologist the other day because my skin has been itching more over the past few days. I went gluten free about a month ago and have had massive improvements of many aillments and then some skin issues started happening again, I don't know if I accidently got glutened...so I decided maybe if I eat something with gluten I will get a definet reaction and the dermatologist will want to do a biopsy. My primary thought I most likely have DH by the description of the itching and in conjuction with all other symptoms I have had for the past 2 years it made sence...but no biopsy. Sometimes I really battle with-in myself wanting a firm diagnoses. Maybe I will never get that and just keep gluten free. Anyway I had my Dermatoligist app on Tuesday and ate gluten the day before and of course no significant reaction just bad itching and usual tyical hives I have had for over a year. But last night I had really bad itching on my knees that kept waking me up. This morning I woke up and there is what looks like a significantly raised hive that might possible have fluid under it. Is this DH or ezcema? This would be 4 days after I ate gluten is how long it can take for a reaction? I will try to get a pic of this hive posted. Any advice would be greatly appreciated.

PS I can't figure out how to post a pic. I will try again.

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jststric Contributor
jststric
Posted

I have not gotten an official diangosis either. Mine was more rashes that itched like crazy and sometimes it would burst into sores. And always in a very private spot. My doctor was completely sure I had a delayed onset of an STD!!! I've been married 22 yrs and have only had my husband but she was convinced it would show up as such. Imagine her surprise when it wasn't, lol! I KNOW what does it. She is obviously quite uneducated in the Celiac realm. The specialists I went to in the beginnings were equally as baffled and all their tests came back negative also. DOCTORS IN THIS COUNTRY ARE WOEFULLY UNEDUCATED IN THIS DISEASE!!! Like I said, I did my own research and reading online and being in forums and board like this one has taught me so much. I know what causes my outbreaks. I don't need it to be an "official" declaration. Especially when there's not much more than our dietary changes and sticking with it can do for us.

missybean Apprentice
missybean
Posted
  • Author
I have not gotten an official diangosis either. Mine was more rashes that itched like crazy and sometimes it would burst into sores. And always in a very private spot. My doctor was completely sure I had a delayed onset of an STD!!! I've been married 22 yrs and have only had my husband but she was convinced it would show up as such. Imagine her surprise when it wasn't, lol! I KNOW what does it. She is obviously quite uneducated in the Celiac realm. The specialists I went to in the beginnings were equally as baffled and all their tests came back negative also. DOCTORS IN THIS COUNTRY ARE WOEFULLY UNEDUCATED IN THIS DISEASE!!! Like I said, I did my own research and reading online and being in forums and board like this one has taught me so much. I know what causes my outbreaks. I don't need it to be an "official" declaration. Especially when there's not much more than our dietary changes and sticking with it can do for us.

I Agree! All the doctors seem to do is dismiss everything...no one will acknowledge that all my symptoms were related but my primary who is a PA. I love talking to everyone on this site because it lets me know I'm not the only one going through this and having a official diagnoses isn't going to make me healthier...following a gluten free diet will. I really appreciate you sharing with me. It gives me a lot of encourgement. I still struggle with days of wanting a diagnoses so I can quit secound guessing myself. But I'm finding that peoples responses like yours is helping me get over that. By the way that is awful what your doc said about delayed onset of an STD.......sounds like she was hitting the crack pipe when she came up with that one. I had a doc tell me I might have herpes when I went in for a reoccurring bladder infection....when he said that I stood up and grabbed my purse and he knew he had said the wrong thing and handed me some samples for a stronger antiboitic and I never went back there again. Been married ten years and you get the point. Now I understand why people swear off doctors or western medicine.

ravenwoodglass Mentor
ravenwoodglass
Posted
I have not gotten an official diangosis either. Mine was more rashes that itched like crazy and sometimes it would burst into sores. And always in a very private spot. My doctor was completely sure I had a delayed onset of an STD!!! I've been married 22 yrs and have only had my husband but she was convinced it would show up as such. Imagine her surprise when it wasn't, lol! I KNOW what does it. She is obviously quite uneducated in the Celiac realm. The specialists I went to in the beginnings were equally as baffled and all their tests came back negative also. DOCTORS IN THIS COUNTRY ARE WOEFULLY UNEDUCATED IN THIS DISEASE!!! Like I said, I did my own research and reading online and being in forums and board like this one has taught me so much. I know what causes my outbreaks. I don't need it to be an "official" declaration. Especially when there's not much more than our dietary changes and sticking with it can do for us.

I get DH sores in that real pleasent place also when I get glutened. I think gluten is still doing it's dirty work even as it leaves the body. I also had a doctor who looked at a lesion, this one was on the back of my neck no less. and say 'gee that looks like herpes'. Of course they didn't do any tests or anything to see if it was and of course they also had no clue that DH is called DH for a reason. The lesions look like herpes lesions. I have to wonder how many folks with DH have been give a herpes diagnosis just by sight and given meds for it when it was really DH the doctors were looking at.

angieInCA Apprentice
angieInCA
Posted
I have to wonder how many folks with DH have been give a herpes diagnosis just by sight and given meds for it when it was really DH the doctors were looking at.

I was told for years I had Herpes even though all tests came back negative for any know Herpes virus. I knew I didn't have it and kept seeking Dr. after Dr. opinions. Took me doing the research and calling till I found a Dr who knew what DH was and how to test for it.

momxyz Contributor
momxyz
Posted

Missybean,

I started getting this rash on my feet last October, a full year ago. I have had athlete's foot before, which subsides with the spray or cream, but this time that didn't do it. I figured I had superinfected the spots with staph by scratching, so I applied triple antibiotic ointment. That soothed the scratched spots, but I kept getting new spots, and it started going up my ankles.

By spring I was so desperate I was actually "disinfecting" my lesions with Betadine. (Stupid is as stupid does.....) I really didn't want to go on oral antibiotics but I resigned myself to the fact I was going to have to schedule an appointment. We were money tight at that time so I had been holding off.

then my daughter had some problems...whole nother story.... she went gluten free. In researching "the gluten connection" I read about DH.

My rash was extremely itchy and ugly at this point... I hadn't worn a skirt or a dress all summer... so I decided to go gluten free.

Improvement was slow but steady. I did use over the counter hydrocortisone cream to control the itching, 2 to 3 times a day. Since starting the diet, I went "off the wagon" 2 times, and both times, the insane itchiness returned and I got new blisters. As things calmed down, upon advice of other members of this board, I stopped using the hydrocortisone - its not good to use this long term - and switched to a product containing pramoxine as the active ingredient. (Sarna lotiom or creme was recommended by another forum member; Gold Bond cream is what I ended up using, has this same ingredient.)

I used it three times a day.... then could get away with 2 times...and now for the last couple of days have only had to use it once a day. I have been trying to folllow the gluten-free diet for two months.

After my first "re-glutening" it took about 3 days for an eruption to occur so your reaction seems to be in the same ballpark... After my second re-glutening I had GI symptoms - which I had not noticed before - within 24 hours, and new blisters within 48 hours. I decided I did not need an official diagnosis!

By all means I would recommend staying gluten free. Most people on this forum have had ups and downs; just stick with it. Whether or not its DH or excema, I have also read about connections between excema and gluten intolerance.... and that excema sufferers also benefit from a gluten free diet.

It does take time, and from what I've read on this board, it can take several months for the skin condition to resolve completely. Just sitck with it and be patient, and let us know how you are doing!

esammarie Newbie
esammarie
Posted
Missybean,

I started getting this rash on my feet last October, a full year ago. I have had athlete's foot before, which subsides with the spray or cream, but this time that didn't do it. I figured I had superinfected the spots with staph by scratching, so I applied triple antibiotic ointment. That soothed the scratched spots, but I kept getting new spots, and it started going up my ankles.

By spring I was so desperate I was actually "disinfecting" my lesions with Betadine. (Stupid is as stupid does.....) I really didn't want to go on oral antibiotics but I resigned myself to the fact I was going to have to schedule an appointment. We were money tight at that time so I had been holding off.

then my daughter had some problems...whole nother story.... she went gluten free. In researching "the gluten connection" I read about DH.

My rash was extremely itchy and ugly at this point... I hadn't worn a skirt or a dress all summer... so I decided to go gluten free.

Improvement was slow but steady. I did use over the counter hydrocortisone cream to control the itching, 2 to 3 times a day. Since starting the diet, I went "off the wagon" 2 times, and both times, the insane itchiness returned and I got new blisters. As things calmed down, upon advice of other members of this board, I stopped using the hydrocortisone - its not good to use this long term - and switched to a product containing pramoxine as the active ingredient. (Sarna lotiom or creme was recommended by another forum member; Gold Bond cream is what I ended up using, has this same ingredient.)

I used it three times a day.... then could get away with 2 times...and now for the last couple of days have only had to use it once a day. I have been trying to folllow the gluten-free diet for two months.

After my first "re-glutening" it took about 3 days for an eruption to occur so your reaction seems to be in the same ballpark... After my second re-glutening I had GI symptoms - which I had not noticed before - within 24 hours, and new blisters within 48 hours. I decided I did not need an official diagnosis!

By all means I would recommend staying gluten free. Most people on this forum have had ups and downs; just stick with it. Whether or not its DH or excema, I have also read about connections between excema and gluten intolerance.... and that excema sufferers also benefit from a gluten free diet.

It does take time, and from what I've read on this board, it can take several months for the skin condition to resolve completely. Just sitck with it and be patient, and let us know how you are doing!

I am really lucky. I went to the dermatologist after my primary doctor didn't know what this recurring rash was. I've had it on and off for two years. On my elbows, knees, sometimes spreading to my arms and my feet. I thought I was allergic to something and went crazy and spent a lot of money changing shampoos, conditioners, skin cleansers, makeup, etc. I finally gave up and went to the dermatologist and the physician assistant suggested a biopsy because she, the doctor she practices under, and the resident (the perks of working at a university with a teaching hospital and health care system) didn't know what it was.

I was shocked when it came back with suspected DH and even more surprised when the peri-lesional biopsy also said DH. Blood tests all concurred.

You know, there are pre-cancerous cells, pre-cancer growths, particularly on the skin and in other places. Could there be such a thing as pre-celiac, or pre-DH? If you had pre-cancerous cells on your skin they would act swiftly to remove them and study them and they would watch you. Why not the same for celiac disease? Why not the same for DH? Do you have to be one day negative and all of a sudden positive? I am sure it happens over time. It would have to develop gradually, just like an infection builds and then hits full force.

I am so sorry you have to suffer this way. Work with what works for you. If you feel better gluten-free then you should be gluten free!

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missybean Apprentice
missybean
Posted
  • Author
I am really lucky. I went to the dermatologist after my primary doctor didn't know what this recurring rash was. I've had it on and off for two years. On my elbows, knees, sometimes spreading to my arms and my feet. I thought I was allergic to something and went crazy and spent a lot of money changing shampoos, conditioners, skin cleansers, makeup, etc. I finally gave up and went to the dermatologist and the physician assistant suggested a biopsy because she, the doctor she practices under, and the resident (the perks of working at a university with a teaching hospital and health care system) didn't know what it was.

I was shocked when it came back with suspected DH and even more surprised when the peri-lesional biopsy also said DH. Blood tests all concurred.

You know, there are pre-cancerous cells, pre-cancer growths, particularly on the skin and in other places. Could there be such a thing as pre-celiac, or pre-DH? If you had pre-cancerous cells on your skin they would act swiftly to remove them and study them and they would watch you. Why not the same for celiac disease? Why not the same for DH? Do you have to be one day negative and all of a sudden positive? I am sure it happens over time. It would have to develop gradually, just like an infection builds and then hits full force.

I am so sorry you have to suffer this way. Work with what works for you. If you feel better gluten-free then you should be gluten free!

I can't agree more with what you said about pre-celiac. I think that is what's going on with me. I haven't had a boipsy yet. I asked the dermatologist if we should do one and he took one look at it and said thats not DH. DH has oozing blisters and it mostly happens to people that are very elderly. I don't think he is very educated in this matter. I didn't even bother argueing with him. Because with all of the blood tests I have had done I know it would come back negative. My primarly believes it is DH and yesterday took a look at one larger hive on my knee that has been itching so bad and she said that that was typical of DH...on the knees and elbows, etc and that would warrant a biopsy but she doesn't want to put me thru that while I'm pregnant. The rashes and hives I have haven't blistered except I keep waking up with scabs inbetween my fingers on my hands and they are very sore and I had really bad itching there about a month ago before I went gluten free...but since going gluten free they stopped itching and the skin got really dry and now I have gotten a few scabs. Weird. I'm not sure if that is DH or eczema or something else. On top of all this a couple of weeks ago I started getting a new rash and keeps spreading, The dermatologists thinks its ezcema my primary thinks it something called pityriasis rosea which is a virus that can take a couple of weeks to a couple of months to go away. So we will see what happens. It either the virus or some kind of other allergy.

  • 2 weeks later...
Swimmr Contributor
Swimmr
Posted

I have been gluten/wheat free for a couple years now and every so often I would get this strange sore in my ear, but on the outside right behind the lump that you push on to plug your ear...it would start out insanely itchy. Then over night it would become a breakout of blisters that itched and the first time I had it scratched it open and it oozed and oozed forEVER. It finally scabbed over but would take a week or more for it to heal up. Every time I got it, it would be in the same spot...just a smidgeon more to the right or left. Up until about 6 months ago I was still going out to eat here and there...least twice or more a month. Now I don't do out but MAYBE once a month (mainly because I can never be certain what they put on my plate hasn't been contaminated in some way :( ). I have NOT had the blister in my ear at all in the last 6 months.

I never had it tested, but I am certain it was a worse DH reaction than what I get on my back and glute area that are small red bumps that itch and won't pop and take literally a month to completely heal, leaving often times a scar. I get them when I've had any gluten or especially wheat unknowingly.

Mysh Rookie
Mysh
Posted

I've never had a skin rash in my life (now 40) until I went gluten free recently. Now I have this incredibly itchy blister like cluster on my neck/shoulders. It even went right through onto my scalp. My doctor told me to take some allergy tablets and use a topical cream, but even weeks later it's still there, less itchy but still there. If I scratch it, it spreads. Have another appt with her this week and I'm going to insist on seeing a dermatologist.

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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