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Hello everyone, I just want to share my story and see if it sounds like I have DH. I was never diagnosed by a dermatologist, this was a self-diagnosis, but I have many reasons to believe that I am right. I am a 25 year old caucasian female. I consumed gluten for most of my life until the age of 21 or so; then, I developed a weird lesion on my neck that would not go away. I tried different antibiotics, but nothing worked. Then, more lesions started popping up on my neck and then face. Sometimes they would form a line pattern, so I suspected sporotrichosis and took some antifungals, which helped at first, but then stopped helping. The lesions were huge, like the size of a dime, but they mostly hurt and leaked pus (sorry this is gross); however they did not look like boils (that I see on some DH pictures); I think they immediately came out as open sores, but of course I might have picked at them without realizing at the time (being on adderal did not improve things). Their center would be pretty hard and moist, and filled with what looked like granules of some sort. They never really itched (still do not itch); however, they do hurt/sting, rubbing them feels sorta good so I guess they do kinda itch (I am confused lol), but the one on my lip REALLY stings, if I start picking at it, tears would start flowing from my eyes involuntarily. It feels like a thousand pins in my lip. Also, after healing, they would leave a purple and white scar that would not go away and stand out against the rest of the skin; the ones on my face are actually idented sorta like cystic acne scars; the one on my nose is uneven and bumpy. Sometimes the scars would form a mini-blister that would be painful and unproductive to pop; sometimes they would form a pimple. I (mostly) do not eat gluten anymore except rare random exposure due to my forgetfulness or lack of food to eat (the other day I bought Rafaellos and ate a couple before realizing they do have some gluten in them; but I take Gluten Cutter, not sure if that works or not). So, anyways, to summarize: - The lesions do not exactly itch, but they definitely sting/burn, and it feels good to rub some of them (not my lip, that is too painful). - If I remember correctly, they never looked like blisters, and started with pretty large open sores. - If I get an outbreak now, it will start looking almost exactly like a pimple, but if I try to squeeze it, it is a painful, hard, watery blister with nothing coming out. It feels like there is a cluster of granules under the blister. Sometimes it starts as a brown, VERY TOUGH piece of tissue (a little crust that is almost impossible to rip off, later it falls off by itself and a regular crust forms). - The lesions leave scars that are either indented or discolored or both. Even the scars still feel kinda prickly and they never go away. - Cutting down on my gluten intake decreased the number and severity of outbreaks, but I still do get them from time to time. Right now my face does not look so good without make-up. The weirdest part: At some point I though I had Morgellons disease, and my lesions did look exactly like the Morgellons lesions with little "roots", etc; I was also finding fibers on my skin and even under my skin. I am not sure if I was losing my mind or what, but I even studied samples of my skin under microscope and found ingrown fibers, etc. Later those symptoms mysteriously vanished when I started cutting down on gluten intake. I am still not sure what it was. So can anyone relate to this? I am REALLY interested in your feedback! Thanks!
I am making this post on behalf of my girlfriend. She is currently being run through a variety of tests to determine if she has MS. Bloodwork, MRI, spinal tap. She has had a hard time not eating gluten products, and has it in spurts. She has been diagnosed with celiac disease since she was 17, suspected at 13, and is now 21. So she has continued eating gluten products since her diagnosis. Her symptoms include: Constant numbness in her limbs, with attacks of severe numbness and loss of control. Difficulty Walking/legs giving out. Difficulty with balance. Active brain lesions in her white matter and spine. Some vitamin deficiences, but we do not know the specifics. She has had a spinal tap performed, but the results have not come back yet. I have done some research and I have found that celiac disease can cause white matter lesions and spinal lesions, and all or most of these symptoms. I have not been able to find if celiac disease will cause a positive result for oligoclonal bands or antibodies in the CSF. I am very worried that her neurologist will continue to diagnose her disorder as MS, when her celiac disease (and ultimately malnourisment) has been presenting MS-like symptoms. She has told her neurologist that she had celiac disease, and the doctor had basically no reaction. Can anyone provide any useful information or has had any similar situations where they were on a path to MS diagnosis, had lesions and everything... but it was ultimately a misdiagnosis? As of right now she is on a gluten-free diet, and I am hoping that her symptoms cease. She has said that they have in the past. However the lesions may always be there, which her neurologist may not understand can also be caused by celiac disease.