jlaw
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by jlaw
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And also, since I am a new expert on lichen planus, I would suggest you do some image searching of that as well, because it is often associated with changes of the mucosa of the mouth as well.
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Thankks Bartfull, but I guess I'm looking at it from the other side. What if it's a chance I don't have DH? I think it's worth it, given that it's such a huge, life long change. Lichen Planus clears up by itself after running its course, so it was not necessarily eating gluten-free that cleared my rash. I will always be eating low gluten regardless because...
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Lyn is it possible that you could have lichens planus?? Adalaide I've not heard of gene tests being inaccurate. Have you heard of cases like this? I'm into day 3 now and still doing ok...
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Hi friends, I have been in and out of this forum for a bit and now wanted to update you on the latest twist. After my skin biopsy, i have been gluten-free for nearly a year. After extremely extensive rash (scalp to soles) my skin is now nearly free of active lesions. Lots of the post-lesion marks though! We live in India but currently back home in Aus for...
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Hi Krystal, just the description of what happens sounded exactly like how my DH started and felt. And I'm not sure about the combination of gluten+msg etc, but it is worth remembering that those of us with DH don't often get the severity of illness from the gut suddenly after ingesting gluten. Mine is definitely a gradual build up. Some people can tell straight...
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heat, humidity and sweat...absolutely make the itch worse. I mean if you're sweating, the salt goes into any open lesions, you're automatically itching and stinging! Here in India, the heat and humidity are huge factors, over 100 for most of the year, and not much less than that at night. In fact, we're planning on going back home to Aus for the hot season...
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lol!! You sound like my mum, and of course you are right. Hubby and I have decided to slowly start transitioning out, but it is not easy. We run a business here so need to sort that out. We're home in June(to be able to skip the hot season here) and already have the specialist appointments lined up, then back after that for another 18 months
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Squirming did you look this up for me? Or are you just a dermatology whizz?? Either way you are so lovely. Thank you. Hmmm, I never thought about the face not being mentioned. I did think that it's often said DH is not on the face (although I know that to be untrue.) I just thought it was later in the DH lifespan that it appears on the face. Which now that...
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although if you had a sympathetic doctor, the genetics test and your own observations may be enough for a diagnosis?? Ahh, I don't know. It really is a dilemma. But if it was me, I probably would continue the gluten. It's such a lifestyle change and particularly hard with children. I personally would need the formal diagnosis behind me. BUT that is only me...
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*sigh*. Thanks. Hate the whole guessing game. Dr's visits not so straight forward here. Feel so often I'm on my own.
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Grrrr. After having to figure out my son's skin and all that mental stress, my dear daughter (nearly 6) has popped up with her own variety of skin blisters. A few on her fingers, two on her face. One on the back of her leg near her foot, all within the last 3 days or so. I'm thinking maybe dyshidrosis (relying on google here...) Does anybody have any experience...
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Mine only itched to the point of insanity while I was still consuming gluten. Once I stopped, it's like an itch that's constantly there in the background but not an acute, insatiable itch.
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Hi friends, I have been sent an article on DH, written by a dermatologist who has coeliac disease himself and specialises in DH. Only problem is it is electronic (PDF) and I'm not sure how to make it available. If anyone wants it, perhaps email? Or can I attach things in private messages here? Anyway, let me know if you're interested in figuring it out....
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Oh I have just started to notice this too...never occurred to me they were connected. Everytime I brush my hair, more and more is coming out. I thought maybe i'm just getting older...
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Hi Jenn, my DH comes in many different forms all at once. Some of them are not blisters at all but still definitely DH, so I would say the answer is no.
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ARCHIVED Doctor Visit, Finally A Good Doctor
jlaw replied to JaneWhoLovesRain's topic in Dermatitis Herpetiformis
That's great Jane. So nice to hear a positive report! Keep us updated, anxiety over up coming tests is really not my strong point, I can understand your nervousness. Best of luck. -
ARCHIVED Not Dh, But What Is This? (With Picture)
jlaw replied to ButterflyChaser's topic in Dermatitis Herpetiformis
Hi Butterfly, have you considered Keratosis Pilaris? -
ARCHIVED Chronic Non-Specific Dermatitis...
jlaw replied to jlaw's topic in Dermatitis Herpetiformis
Thanks all, and Mindwarp, you sound like the kind of person I wish I was more like! You are absolutely right, especially in this culture where everything is done in a round-a-bout way, as opposed to talking directly. Still, I do have a contact for another reputable dermatologist in this city...my poor little brave boy. Should not have to do this again...... -
ARCHIVED Chronic Non-Specific Dermatitis...
jlaw replied to jlaw's topic in Dermatitis Herpetiformis
I had wondered about the sabotage thing myself....it sounds horrid but wouldn't have surprised me. Especially since he told me specifically he would take clean skin and then didn't. I'm kicking myself for not actually watching him - but I had to turn away. And we had had the 'take it from the clean skin' discussion immediately prior so I thought we were sorted... -
...was the result of my son's skin biopsy. Which quite frankly, I knew before I even took him to the doctor's office. I was kind of hoping to clear up the 'non-specific' part! So needless to say a little frustrated. And a little mad. When I spoke to the arrogant doctor (as previously documented on this forum :-) ) we discussed that he would take 3 samples...
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Interesting. I'm currently awaiting the results of my son's skin biospy. He has what looks like KP on the back of his elbows, but then it started to blister. And since I have DH, I wanted to have him tested. What is your experience of KP blistering? Is it itchy? His gets quite itchy.
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oh thanks Friends. To be honest I hadn't even thought of reporting him. This is India, and although this is an internationally accredited hospital (the Dr himself trained in the States) the culture is still very much that of the Dr being god, always knowing best and patients ignorant of their own health conditions. I think it was actually quite confronting...
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ARCHIVED A Brief History Of My Coeliac (Uk)
jlaw replied to Cranleighbeemer's topic in Introduce Yourself / Share Stuff
Nothing ground breaking to add, but it is lovely to hear a voice of optimism and hope. And a beautiful marriage by the sounds of it! Thanks for sharing your story :-) -
So yesterday I had my four year old biopsied for DH. It was one of the most frustrating experiences of my life. This is the same dr that did my skin biopsy after literally arguing with him that I did not have scabies. So I walk in with my son whose skin has started to blister in 4 different patches. The dr tells me my son has scabies. (Here we go again.)...
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ARCHIVED Comparison Pictures Not Better, Worse. Maybe Healing.
jlaw replied to Darkfire Ann's topic in Dermatitis Herpetiformis
Ann, I'm so sorry. My body is completely affected accept my face, but not to the same extent. And it is absolutely life changing. just want to say I hear you. But squirming you posted somewhere that raisins have iodine? Can't find it now but did I read that correctly? I'm pretty much living on raisins.