BooParks

Mine was diagnosed as poison ivy for years by my physicians including my allergist. In the end though it became huge blisters, the size of a baseball on my knees and quite deep. It took the longest time to clear up on my feet for some reason, even after the three years it took for me to get off of the dapsone. I'll still get them on my feet and in my mouth first whith an accidental ingestion of gluten. I hate to say this and it could be bad advice since it can cause an infection, yet it does help if I pop the itchy blisters.

Biopsy confirmed with DH May of 2000 and yes had many blisters in my mouth along with ulcers on my tongue.

My belief is I had celiac disease from early childhood and having twins with multiple surgeries there after really set it off big time. It took 13 years from the start of serious/major symptoms before I recieved a diagnosis. During this time damage was being done to my body that was irreversable. So this does need to be taken into concideration. I'm looking at having to have open heart surgery even after 9 years of being gluten-free and having that confirmed biopsy. For what? The biopsy was done, not because of all the other auto-immune problems I had going on or the digestive problems. They had a pill for every symptom I had except the itchy blisters that even the injections of steriods was no longer fixing. My angry PCP sent me to a specialist because I wouldn't stay out of the poison ivy! The biopsy results can back very positive for DH associated with celiuac disease. If you have biopsy confirmed DH, not to mention the highest IGA counts John Hopkins had ever seen, then you have celiac and no endoscope is needed. All symptoms, except heart damage along with Osteoperosis has corrected on the gluten-free diet. No more itchy blisters or having to take Dapsone after 3 years of gluten-free diet. Yet I still have doctors who will tell me point blank that I do not have Celiac Disease, that DH is not connected with Celiac Disease and that I should go back to a gluten containing diet so they can do an endoscope if one is truly needed. I must add that if I even get a micro-organism of gluten at this point I'm on an ambulance ride to the ER to get IV due to dehydration that sets off my muscle cramps that leaves me laying on the floor unable to move. If you are responding to a gluten-free diet and are doing well what the heck does it matter? Why is it so darn important to others that you eat the gluten? To add to that the social pressure to try a little don't end with a biopsy confirmation either.

This was a life saver for me when I first started out on the gluten-free diet. Go to Delphiforums.com. Click on the health section on the left hand row of options. Find Celiac on the list of options there and click on that. At times it will then bring you to a page that is an advertisment. Just go down and click cancel and you will be in the Celiac forum. Go to the products lists and there is a ton of information and products that are checked every few months to verify if they are safe. Again.. even with this do read the ingrediants to make sure they havn't added anything or changed thigs up. Kraft will list all gluten containing ingrediants. Whole foods are always safe and you will get the nutriants you need from the whole fruits and vegits. There are many recipies on line if you "Google" and put in Gluten Free recipies. You can even break it down and put in "gluten-free Chicken recipies" or whatever you're looking for. It will get easier with time and you will be able to go to the grocery store and just pick out what you like just as you did before, only gluten-free stuff. And somethings you will just know you have to look at those ingrediants again or check with the manufacturer. There is also a celiac List Serve. With this you get tons of information and there are people who have some really good information that is accurate. The problem is you also get people who post that give false information or are so sensitive to anyone telling them what they havbeen eating and enjoy has gluten in it that they will go off. The link is CELIAC@LISTSERV.ICORS.ORG and you can sign up there. The updated posts get sent to your email, so you will get tons of email. I've found that in the 8 years since I was diagnosed my biggest probelm and chances of being contaiminated are through prescription drugs. Some will argue me on this but I've had three cases of this in the past 2 years alone and one case the lab that manufactured the drug actually told my pharmacist it was gluten-free before I took it and it made me very ill. When he called back and pressed the issue they said that it did have some wheat startch but they felt it was "an insignificant amount" since the tablet was so small. This has always occured with generic drugs. My insurance will not pay for name brand when a generic is available even if I can't take the generic. Hope this all helps.. I'm on Twitter as BooParks in Nashville and also have a myspace account with my favorite recipies link.. Open Original Shared Link. It's not set to private and is open for anyone to view.

The Rice Chex has some awesome recipies on the back of the box!! Havn't tried the others and the nut one is out due to nut allergy. Thanks Chex!

Husband has DH (at least we're about 99% sure it's DH); he's been taking Dapsone for several weeks now and his blisters were healing and turning purple. Yesterday I noticed that his face was red; by this morning it was clear that he has a new outbreak on his face. He also has a few new blisters on his backside and his knees and elbows are red too.

If he's been glutened (or even if he hasn't), is it possible to have a new outbreak while taking Dapsone? He's taking 100 mg per day.

BTW, these blisters are MUCH smaller and fewer than the original set. The previous rash is still healing well and turning dark purple.

Thanks,

JoAnn

Hi, I was diagnosed with DH in May of 2000 after spending years with those itchy blisters and being told it was poison ivy. I also have many serious allergies, like a 10 out of 10 on the allergy scales. especially the molds and yeasts which are common in wheat products. Thus why I'm believing I had leaky gut. Anyhow, when I was diagnosed by a doctor, at Vanderbilt University Medical Center in nashville, the doctor told me I had the highest IGA counts along with worse case of DH they had every seen. Biopsy was sent to John Hopkins in California. I also was on many steriods prior to diagnosis and was started on 100mg of Dapsone. Some of the blisters on my knees where the size of baseballs and had become quite infected. The Dapsone helped right away and within a week I was clearing out really nice. I'm thinking I had a couple of small break outs on my feet and elbows even on the Dapsone. When you say the backs of his elbows and knees though I have to wonder if that is the soft tissue area?? I never broke out in soft tissue areas outside of my waiste, mouth and the top of my head. It was my elbows, knees, head, feet, fingers, mouth and waist areas. It took three years of being strict gluten-free to get off the Dapsone completly with only minor out breaks if I messed up. Yes, iodine can make him break out as perfumed/die added detergents or fabric softeners or sitting out on the grass in the yard. Wishing you best.