Blisters - Was Wondering If Anyone Can Help

[DinaB]

Hello everyone,

I am having some difficulties trying to wrap my arms around what is going on with me. Occasionally, right after being glutened, I experience a breakout of blisters which are located sometimes inside my mouth, but mainly outside and on my chin. When they break open they spread like crazy. Originally the doc said it was fever blisters/bacterial and gave me Bactroban (sp?). I've using that twice a day along with Valtrex and have been on it for almost three weeks...everything seems to be going away, but not 100%. Yesterday, I was glutened by accident and within a few hours had another new blister on my lip. I am confused and have been reading so much on DH, and didn't think that if I was Gluten Intolerant I could get blisters. Also, depending on how much and what was ingested I've gotten severe itching on my elbows as well. This is all new to me, as this is my third breakout since April, and I am not having fun with it. The doc said I shouldn't experience any new breakouts while on Valtrex, but I am thinking it's not fever blisters, but they do resemble each other.

Any advice would be greatly appreciated.

[YoloGx]

I would get the blisters checked out for DH.

[dhd2000]

I used to get DH on my face and once had a terrible outbreak on my lips. I ended up getting a blister on my knee biopsied for confirmation much later. If yours is DH, you can get outbreaks from iodized salt and ibuprofin products (like advil). I gave up both of those, along with most processed corn, like high fructose corn syrup, and my DH has been gone for awhile. My sister and niece both got cold sores on their lips from gluten before being diagnosed with celiac. Now on the gluten free diet, they don't get them anymore. My sister does react to vinegar too. You may want to try a food diary and see if you can connect the outbreaks with anything in particular. Good luck, I know it's not fun!

Dee in NC

[DinaB]

I used to get DH on my face and once had a terrible outbreak on my lips. I ended up getting a blister on my knee biopsied for confirmation much later. If yours is DH, you can get outbreaks from iodized salt and ibuprofin products (like advil). I gave up both of those, along with most processed corn, like high fructose corn syrup, and my DH has been gone for awhile. My sister and niece both got cold sores on their lips from gluten before being diagnosed with celiac. Now on the gluten free diet, they don't get them anymore. My sister does react to vinegar too. You may want to try a food diary and see if you can connect the outbreaks with anything in particular. Good luck, I know it's not fun!

Dee in NC

Thanks for the info. It's funny that you mention Vinegar, because that is what I ingested by accident last week right before the breakout. Yesterday's glutening was from a toaster, so it wasn't too bad. I do notice that a liquid glutening is much worse for me than a dry one, if that makes any sense. Both give me horrible symptoms, but the eczema and blisters appear after a liquid glutening. I was just wondering if anyone had tried Bactroban, and if maybe it isn't truly bacterial.

[ravenwoodglass]

It does sound like DH. It seems that folks with DH are often the ones who react to gluten distilled grains in either alcohol or vinegar. I should do a 'poll' on that sometime. DH can get infected and you would need the antibiotic ointment if that was the case but it was useless for me as far as these outbreak process goes. The only thing that helped for me was the diet. Do be sure to check all your topical products, makeup, soaps, lotions, shampoos etc and make certain they don't contain gluten ingredients. If they do because your putting them on open skin it could keep the outbreak going. The good news is the longer you go without a glutening the more antibodies have left the skin and the outbreaks when you to get them may be less severe. That can take a while though.

I do feel for you and wish I knew something that would help them go away faster. Hopefully someone else will.

I am including a link to the NIH website and the Awareness Campaign they have going on. In it is instructions on how to biopsy for it if your derm hasn't done it before. They have to biopsy beside the lesion not the lesion itself like my derms always did.

Open Original Shared Link

[nasalady]

I am confused and have been reading so much on DH, and didn't think that if I was Gluten Intolerant I could get blisters. Also, depending on how much and what was ingested I've gotten severe itching on my elbows as well.

Any advice would be greatly appreciated.

Sounds very much like DH to me....my husband is dealing with the same thing. My understanding is that if you have DH, you have celiac disease, not NCGI.

Here is a quote from the National Institutes of Health website on celiac disease (Open Original Shared Link)

Biopsies of the proximal small bowel are indicated in individuals with a positive celiac disease antibody test, except those with biopsy-proven dermatitis herpetiformis.

Which seems to imply that a diagnosis of DH is equivalent to a diagnosis of celiac disease.

And here is an article by Dr. Russell Hall which discusses the connection between DH and celiac disease:

Open Original Shared Link

I agree with the previous posters that you should see a dermatologist and ask to have the skin next to the blisters biopsied. Not the blisters themselves....but the derm should know that. My husband has taken Dapsone which helped a lot, but he didn't like the side effects so has stopped taking it.

Good luck!! I hope you feel better soon!

JoAnn

[DinaB]

Sounds very much like DH to me....my husband is dealing with the same thing. My understanding is that if you have DH, you have celiac disease, not NCGI.

Here is a quote from the National Institutes of Health website on celiac disease (Open Original Shared Link)

Biopsies of the proximal small bowel are indicated in individuals with a positive celiac disease antibody test, except those with biopsy-proven dermatitis herpetiformis.

Which seems to imply that a diagnosis of DH is equivalent to a diagnosis of celiac disease.

And here is an article by Dr. Russell Hall which discusses the connection between DH and celiac disease:

Open Original Shared Link

I agree with the previous posters that you should see a dermatologist and ask to have the skin next to the blisters biopsied. Not the blisters themselves....but the derm should know that. My husband has taken Dapsone which helped a lot, but he didn't like the side effects so has stopped taking it.

Good luck!! I hope you feel better soon!

JoAnn

Thank you everyone! I really do appreciate the feed back. The problems is I do not have Celiac disease, but rather VERY intolerant to Gluten. After doing some extensive research this morning, and I am probably wrong, but it said that Celiac's get the lesions in the intestine's and that Gluetn Intolerant people get the lesion under the skin (it did say that Celiac's also get in under the skin). I guess my misunderstanding is that I am Gluten Intolerant and didn't think I could get DH...am I wrong? Very confused.

All of the products I use are completely free of gluten/fragrance/soy/nuts/egg, etc...from makeup to shampoo. My medications/creams, etc...even the darn strip on my razor was getting me. My only glutenings come from accidental ingestion while away from home or eating out. I do notice vinegar always gets me.

[ang1e0251]

Why do you think your "only" GI? There are those that think GI is just a precursor to the damaged intestine of celiac disease. If you have DH, you do have celiac disease. You are right that the meds aren't going to help DH. I'm lucky, I don't get the lesions on my face but I do get them, my razor got me too!

[DinaB]

Why do you think your "only" GI? There are those that think GI is just a precursor to the damaged intestine of celiac disease. If you have DH, you do have celiac disease. You are right that the meds aren't going to help DH. I'm lucky, I don't get the lesions on my face but I do get them, my razor got me too!

I have been tested through blood/biposy/gene and all are negative. I tested through enterolab and definitely positive for gluten interolance. I knew this way before I even tested.

[ravenwoodglass]

I have been tested through blood/biposy/gene and all are negative. I tested through enterolab and definitely positive for gluten interolance. I knew this way before I even tested.

Even with all those negative tests you could still be celiac. I am firmly diagnosed and I don't carry either one of those 2 genes either, I carry a celiac related gene but it is not recognized here as one. Unless of course it is one of the other 7 that the US has newly acknowledged. It doesn't really matter whether you call yourself celiac or gluten intolerant anyway IMHO. The discription of your blisters does sound like DH. The afore mentioned biopsy is the way to find out for sure. A diagnosis of DH is a diagnosis of celiac even if there is no gut symptoms whatsoever.

[DinaB]

Even with all those negative tests you could still be celiac. I am firmly diagnosed and I don't carry either one of those 2 genes either, I carry a celiac related gene but it is not recognized here as one. Unless of course it is one of the other 7 that the US has newly acknowledged. It doesn't really matter whether you call yourself celiac or gluten intolerant anyway IMHO. The discription of your blisters does sound like DH. The afore mentioned biopsy is the way to find out for sure. A diagnosis of DH is a diagnosis of celiac even if there is no gut symptoms whatsoever.

Thanks! I appreciate the information. I just hate when I finally figure something out and then something else goes haywire. I will make an appt with the dermatologist again!