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Schatz added a topic in Dermatitis HerpetiformisMy Turn For Possible DhI think I may have DH, but the doctors I have seen are not convinced as my rash does not present like typical DH.
I was diagnosed with Celiac in 2011 after being quite ill for a few years.
Before my decline in health I developed a blistery rash just inside and outside of my nose. It's a small area affected. Both nostrils and the outside part between the nostrils. The rash gets really bright red, itchy, tender to touch, and a bunch of tiny little blisters that pop on their own after a few days. At the time my doctor said it was herpes and rx'd Valtrex both ointment and pills. The meds did nothing. The rash would come and go, but my nose was/is always red with or without blisters.
In the mean time I started getting very sick with a bunch of celiac symptoms. After 3 years I made it to a doctor who diagnosed me. He said my rash on my nose could be related to celiac, but he didn't offer any treatments other than gluten-free diet.
In the years since 2011 this rash comes and goes. Again, my nose is always red. I have kept track and if I am glutened I will break out with the blisters. However, at times they seem to erupt for no reason but not as badly.
I am tired of my nose being red and this little sores/blisters popping up.
Doctor 1 (the one who completely missed my celiac dx) said herpes.
Doctor 2 said stress induced eczema
Doctor 3 (dermatologist) said contact dermatitis and gave me steroid cream which did nothing
Doctor 4 (GI) suggested related to celiac and gluten-free diet would help
Same dermatologist from before said he doesn't think it's DH because it's just on my nose which is not typical for DH. Also because I have eruptions even when I haven't had gluten exposure. He suggested staph infection. Treated me with ointment and that did nothing at all. Then he gave me oral antibiotics (doxycycline) and the rash and even redness disappeared. I hadn't seen my nose look so normal in 7 years. After 2 months of finishing the meds the rash came back but not very badly. I did have a gluten exposure. Took another round of doxy and it cleared. After 3 weeks I got little blisters and redness again, but very mild and they blisters went away fairly quickly. Still have some redness.
So I have been referred to an ENT (since it's my nose) and he thinks it is herpes. He wants me to start Valtrex again. I told him of my past experience, but he suggested I needed to take it longer and take it daily.
I have had cold sores from the time I was a young child (thank you Mom), and in my really sick years right before my dx of celiac the cold sores were really bad. So I know I have the herpes virus, but actually since I've been gluten-free these past 4 years I have had maybe 2 cold sores.
Here's what I'm thinking. It doesn't make any sense to me why my nose would clear up so nicely while I was taking doxycycline if this is a herpes virus. I mean that makes zero sense. The ENT seemed to brush that off because when I describe my symptoms he says it sounds herpetic. Which I agree with him because I do get little tiny fluid filled blisters.
So, I come here to ask what you all who really understand DH if you think that might be it. There is NO WAY I will consume gluten for a test. We know I have celiac. That is not in question. I'm not going to do damage to my body just to run a test.
Where do I go from here? How would I be able to figure out if this is DH? Is it possible that it is DH? In other words, can one have DH just on the nose in a small area? How long after gluten exposure is it possible to break out with DH?
I read on some sites that it can takes years to completely clear up. True?
I cannot be more careful about gluten. My house is 100% gluten-free including all body products even though I know gluten cannot pass through skin. I do not eat out at all. Ever. The few times I tried (at the beginning of my gluten-free journey) I have gotten sick. The only place I eat other than my home is at my mom's house, and she and I are obsessively careful.
I would really like to not look like Rudolph anymore. 7 years has been enough.
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- 559 views
Schatz added a topic in Gluten-Free RestaurantsBabycakes In Downtown DisneyI recently went to Babycakes in Downtown Disney. I became violently ill. I contacted the bakery to make them aware that I became sick. They suggested it was from something other than gluten.
No, it was gluten. I have very specific symptoms to gluten only. For example the only thing that makes me break out with dermatitis herpetiformis is gluten. All my symptoms are gluten specific.
Some where and some how someone made a mistake and cross contaminated the food. It was the ONLY place I had eaten other than my 100% gluten free home. I only had a bottle of water to drink. I even made sure to not touch the table before eating the cupcake from Babycakes. However, I became so ill that we had to leave Downtown Disney.
I called a friend of mine, also celiac, and she told me that she has also gotten sick after eating at Babycakes in Downtown Disney. Unfortunately for me she forgot to tell me as her experience was a year ago. She never contacted the bakery though.
I wonder how many other people have gotten sick. I imagine most people don't contact the place they've eaten to let them know.
Anyway, that's my warning. I will not eat there again. I do not consider it safe for celiacs. I am, however, a very sensitive celiac. Your level of sensitivity may differ, but I wanted to post because if I had found a warning post about Babycakes in DTD then I would not have gotten sick and missed the Cirque du Soleil show I had already purchased tickets to see. I also wouldn't be sitting here with the blistery rash that some celiacs enjoy.
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Schatz added a topic in Gluten-Free Foods, Products, Shopping & MedicationsBen And JerryHas anyone ever gotten glutened from eating B&J?
There is a buy one get one free at my grocery store this week. I really want some.
- 5 replies
- 6,210 views