susan french

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About susan french

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  1. susan french

    Airborne gluten reactions

    Hi! I have DH. I was diagnosed in 2010 and have been gluten free since then. I still have chronic itching and sometimes the lesions. I might have reactions to airborne, but my outbreaks tend to be when I'm stressed, which is most of the time. Or when I'm sick or my immune system is weakened. It's not as bad as when I was diagnosed. I use cream clotrimaozle betamethasone. Also I take Zyrtec twice a day and benedryl at night. The dermatologist gave me hydroxyzine and Xanax as needed. I use Grandma's baking soda soap. I have had endoscopy and stomach biopsys. I'm better, but it will be with me and you from now on. We just have to make the best choices and eat healthy.
  2. susan french

    I think I got Glutened from straw

    Dermatitis Herpetiformis can manifest itself in lesions anywhere, not just elbows and knees. I have it and although gluten free, I still have severe itching and little bumps that itch. I don't have the lesions any more, but itching can drive a person mad. the bumps can be on buttocks, shoulders, etc. Dapsone is the standard treatment, if you are not allergic. I also use topical prescription creams. I take 2 Zyrtec a day and benedryl at night. Benedril spray helps with temporary relief. Also am on hydroxyzine and doxepin. Sometimes steroids like prednisone help, but can ruin ones blood sugar counts. I use Grandma's Baking Soda soap. Straw may certainly be a factor. I must be coming in contact with a trigger of some kind even though I'm very careful about my diet. Change your dermatologist and get a specialist in DH. I went for years with all kinds of stomach and bowel issues and was 69 years old before being correctly diagnosed. Don't let anyone tell you it's your imagination!
  3. susan french

    DH or eczema??

    Hi, I had DH, mild and looked exactly like your photos. Bumps and severe itching. Finally I got a blister like bump and the dermatologist did a biopsy which confirmed DH. A lot of time the dermatologist doesn't test for Dh because it's not real common, so ask him. After diagnosis, he sent me to a gastroenterologist to test for celiac, which was positive. I had struggled with various stomach and bowel issues for years and was never diagnosed or tested for it. It finally manifested itself as DH. Don't go gluten free until you have the blood work for celiac as you don't get a good result and diagnosis. I've been gluten free for 7 years. Still have the itching, and I don't guess that will go away because I have natural dry skin. Good luck.
  4. susan french

    DH or eczema??

  5. susan french


    I tried Dapsone when first diagnosed with DH, but I broke out in a rash. I also can't take sulfa and since this is like artificial sulfa, I couldn't use it. When I was completely gluten free, the blisters went away, but the skin itching and small bumps continue, and have for 7 years. I'm a diabetic so prednisone is no good. I take hydroxyzine, doxepin, and a 5 mg of Xanax, all at bedtime to alleviate the itching. Also use Clobetesol cream on troubling areas. Clobetesol is expensive so sometimes I just use benedryl spray and cream. I don't think the itching will ever completely go away. But I am gluten free.
  6. Many times a certain percentage of us celiacs with DH are also sensitive to oats. Unfortnately, I am also sensitive to oats. My DH also flares up when stressed. I have avoided oats as well as wheat, barley and rye. I can't even use Aveeno products. I really miss oats.
  7. Get to a dermatologist and be checked again. My DH started off with itching, so severe that it was making me crazy. Until it got to the tiny, pimply-like blisters, he couldn't make a definitive diagnosis after a skin sample. It was DH. It can be treated with dapsone, a sulfa derivative. However, I was allergic to it. Meantime, I began studying celiac. He sent me to a gastro doc who did the tests, and endoscope. I was diagnosed with celiac. I am completely gluten free, no cheating. You have to stay away from wheat, barley, rye, and to be extra careful, oats. I will do anything I can to avoid the skin flareups. A certain percentage of us also react to oats. I can't even use Aveeno products. I still suffer from time to time with severe itching and burning. Most of the time during stressful situations, the itching is worse. I have also been diagnosed with bullous pemphagoid, like celiac, an autoimmune disorder with large blisters randomly appearing anywhere on the body. It is treated with steroids. I would guess you still use oats. As you said, alcohol makes it worse--if it is barley, wheat, rye, or oat based you can have a reaction. (Corn based whiskey probably is ok if you enjoy the occasional libation) First see the dermatologist!
  8. susan french

    New Patient, Help?

    I was diagnosed with DH in May of 2008. My symptoms started with severe itching, but no blisters; after a month the blisters started on the elbows and knees and lower back. The biopsy did indeed determine the DH. I have been gluten free about 8 months now, but the blisters and itching continued. I am allergic to dapsone. We've tried several remedies after my dermatologist conferred with his pals at the Mayo Clinic, I started on a regimen of 1500 mg of tetracycline daily, 1500 mg of nicotinimide (Vitamin B3 niacin) daily, as well as zantac and zyzal. Also evening primrose oil twice daily. The blisters are healing and no more have surfaced. I still itch but it is somewhat localized to the hands and feet and scalp. The itching seems to be better some days and flares up others. Somedays it feels like ants crawling and stinging; other times just the crawling sensation. Nothing I have tried topically seems to help. I have experimented with every type of cream I can think of--desitin, vicks, carmex, aloe--nothing seems to help over time. Suggestions? It seems trivial considering the severity of other types of disease, but the itching etc. can consume your mind and hinder concentration. If one wanted to torture another, they could use this method and be successful!!! I do needlework and if I am occupied with that, I am concentrating and using both hands, the urge to scratch lessens. I'm sure others could used gardening or woodwork to preoccupy them. Nighttime is the worst for me, and I take doxipin at bedtime to sleep. That has been effective. Susan Texas