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Help Me, Think I Have Dh - Dermatitis Herpetiformis


reddwarf

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reddwarf Newbie

Hi, about a month ago or more I had been sick several times..not like myself, I hardly get sick at all. I started itching too, around my ankles, wrists, elbow, knees, inner thighs, buttocks, my testicles even too. Then I had these weird red spots, like blisters pop up on my penis and testicles, looks like herpes but doesnt go away like it does, and my girlfriend of 7 months is totally clean, we have a solid relationship and sex life so she or me would never cheat on each other, we were both clean prior to getting together. She itches on her buttocks, legs, arms and feet...its weird. We thought it was bedbugs or sand fleas, but it doesnt get better, even after moving, no sign of bedbugs in our dwelling at all, or fleas. The spots on my penis worry me most, they ooze a clear fluid sometimes, wont go away!!!! Neosporin wont help, cortizone wont help, calamine lotion dries them up alittle and they form a scab, but the scab never heals, it just falls off in shower or with sex, sex makes my penis itch like fire!!! Im so worried, anyone had these same symptoms? Ive looked around at stuff and this seems to be the best diagnosis I can do, I have no insurence and am very poor, its hard making ends meet, if I have Celiac + DH will I be able to afford medicine or the diagnosis from a doctor? Please help me. I cry so much thinking that there is something wrong with me and I was in such good health.


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ang1e0251 Contributor

It could be DH. I was poor like you when I had the awful rashes. I just went on the gluten-free diet and never looked back. You can give it a good try. It will take 2 -3 months for the rash to heal if it is DH.

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    • Russ H
      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
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    • BelleDeJour
      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
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