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Here are a couple of the abstracts of the articles I can find, and none specify the distance from a lesion that's necessary.
I think mine was perilesional and wasn't very inflamed. The blister was actually intact. The second article says "Noninflamed perilesional skin showed more intense IgA deposition in 18 of 19 specimens compared with that in never-involved skin "
Also, I remember both docs put the biopsy in formalin and I was told by people who work in pathology that for immunoflourescence, you don't put the sample in formalin. But I also read an abstract of a new way to test for IgA deposits without immunoflourescence. I mean, the above articles aren't new, so presumably it's not new information to physicians. So maybe they're all just using the new procedure that doesn't require immunoflorescence and thus can get away with the formalin.
I guess I have trouble trusting my docs, but also have trouble doubting them! Oh the dilemma.
Thanks for your reply. I should get a copy of the results. I would hope that the dermatopathologist would have done the immunoflourescence to look for IgA. My mother-in-law used to manage pathology in town and was aware that that was necessary. She specifically spoke with the pathologist about it, and my dermatologist specifically indicated on the pathology request that the purpose of the biopsy was to rule out DH. So, the dermatopathologist at least should know what he's looking for, and if he didn't have an appropriate sample should have said so.
But, I know that's a lot of "shoulds" - I will check.
How far next to the lesion does the biopsy need to be? The punch biopsy taken was so much bigger than the lesion, that normal adjacent skin was taken with it, but nothing I've read indicates how normal, or how far away from the lesion. What does "next to" really mean? 1mm? 1cm?
My mother-in-law also spoke with another dermatopathologist she works with who was confident that this particular dermatologist I am seeing would know DH well, and that DH, even the lesions, will have unique characteristics, and even if not definitive when taken of just a lesion, should be distinct from other things - but I know from reading some articles that the location of biopsy is very important and that biopsying just a lesion can be misinformative. My derm told me he had a couple of people recently test positive for DH with biopsies...which gave me hope that he knows how to do a proper biopsy for it.
I know that I could go back on gluten and get tested for celiac, but the risk of making my skin worse as it just begins to improve is just not worth it right now. Also, I know I could have tried to get on dapsone, but the gluten avoidance and TCM is working now, so I don't want to mess with it right now. For the first time in 5 months I can say I am improving.
I think I might wait until I am completely better, which is still looking like at least another couple months, and then maybe try some gluten. If that does it perhaps I'll either ask for an endoscopy or a normal skin biopsy. Or perhaps I could go to the immunologist again and ask him to do the biopsy. Perhaps he'd have a better idea.
The other thing I'm unsure of is - as long as I am getting lesions, you'd think it means I have IgA deposits in my skin (if it is DH), so even if I'm a few months gluten free, the biopsy shouldn't be a false negative if there are still active lesions, one would think?
I just wish there was an absolute expert on all this stuff, in the city!
Thought I should post because I've received results of both biopsies.
Neither suggested DH.
Although both docs biopsied lesions instead of skin adjacent to lesions, the derm did biopsy a fairly large area so I know he did get some adjacent skin at least. Also, my mother in law personally knows (she works in pathology) the dermatopathologist who looked at my second biopsy and she chatted with him, and overall, everyone is quite confident that there are certain things you'd see that would at least suggest DH, even if I'm gluten free and even if it's a lesion as opposed to normal skin.
I know I've read, and many here have said that it must be normal skin, not a lesion, and that being gluten free can lead to false negative, but if I was still getting lesions at the time then clearly whatever the cause was was still around, and if there was some surrounding skin in the biopsy, and the dermatopathologist specifically is looking for anything indicative of DH - I have to be able to be somewhat confident in the results? Right?
About 2 weeks ago, I finally turned a corner and started to heal and stopped getting new lesions. Persistent lesions continue to flare but in a very minor way, relative to what it's been like. The scars are all over my legs still, so still not a pretty sight, but the itch is almost completely gone. I don't know what did it - I visited a doc of traditional chinese med who was confident he could help, and I have been taking the stuff he gave me and it was literally 2 days after I saw him that everything un-inflamed and flattened out, but it's also my first month on a non-oral contraceptive, and it's also my third full month gluten free. So who knows!
I'm still gluten and dairy and shellfish and salt free, but am feeling like I might test soon.
Does it always have to be completely normal skin? 2 docs biopsied me with a punch, taking a lesion but in addition a tiny bit of surrounding normal-ish skin. One of those docs is a dermatologist specifically looking to rule out DH. Surely he would know what he was doing? I even asked if he had to take some normal skin and he just said "no no this is fine for now"
I agree with you mushroom - we as patients should be the central part of our healthcare team, but my doctors don't even really communicate with my other doctors (wouldn't it be ideal for the dermatologist and allergist to have some kind of communication?), but I also have a concern that I'm already doing way too much self-diagnosis and need to "trust" my doctors which is why it took me a couple months to even ask my dermatologist about DH and then another couple weeks to ask for a biopsy. Honestly I think my dermatologist really doesn't think it's DH and so he would be very reluctant to prescribe dapsone.
Another question for any of you with DH - do you get recurrent lesions in the same spot just when you think that spot has healed? Until the purplish scar left behind from a lesion has completely faded away, which seems to take a long time, I seem to be susceptible to getting another bump in that same spot, though not as bad as the original.
Did you find your rash went away when you went gluten-free? Or you felt better but the rash didn't improve?
Sorry to hear that you must re-start your journey, in a way, but hopefully now that you know at least a part of what you have, you can address it in the best way possible.
I've been getting UV therapy for a few months now for whatever it is that I have. I did find it helped, at least early on, in healing existing lesions...and I've been on a couple rounds of antibiotics too without any major ill effects that I could note. I did start taking probiotics when I was on the antibiotics.
Best of luck and I'll be following your journey if you keep posting here!
None of my doctors have mentioned Dapsone and I'm always afraid to suggest anything for fear of offending them.
My dermatologist did a biopsy tonight to rule out DH at my prompting and after seeing some new lesions on my arms, so I have that going in to the lab in addition to the one my family doc did in December. The derm took a 4mm punch so I think he got some adjacent normal skin which my family doc did not. 6 weeks til I hear results though...
and if it is not DH, I asked my derm what I would do then. If it's "just eczema," then what? He said he could try getting me in to a different allergist than the one who said "this has nothing to do with food, it's just an acute allergic reaction." Perhaps a different allergist/immunologist will be able to get to the bottom of this.
Thanks Hopeful. I had read about trauma to the skin but wasn't sure what it ended up looking like in most people. What you describe is what I'm experiencing too. At my biopsy site, I have a circle of blisters. Also makes sense that my worst-hit place initially was my lower legs, where I shave the most (that's trauma!) and why I initially thought the whole thing started from 2 mosquito bites but no tests ever showed any sign of infection - it wasn't that the bites were infected, just that they were injured spots of my skin so the first targeted by my new friend DH. My torso is least affected - basically there's no friction or trauma to that area. My arms are about the only place getting much new reactions right now, while my legs are very very slowly healing. My face has been relatively unaffected.
The bandaid thing - when I first started getting bumps, they were oozing and so I used bandaids and literally I'd get more bumps in the exact shape of the bandaid, which I thought pointed to a latex or adhesive allergy. But I seem okay with rubber/latex now. In general things don't get too bad now unless I get a scrape/cut. The new bumps I get in non-injured places are much more minor than they were when I was still knowingly consuming gluten.
The two scratches I got from my dog look disgusting - back when I was "normal" they would have just scabbed and healed in a week. Going on 3 weeks and they're literally two lines of bubbles. But before, even the non-injured skin would turn into these nasty blistered lesions.
This is so frustrating! Thanks again for your reply. Sorry to respond with a frustrated novel...that's just how I'm feeling at this point!
An allergist I saw suggested patch testing but my dermatologist made me cancel the appointments because he said I'd just get "angry back" since my skin is hypersensitive right now. Thing is, I think it's hypersensitive because of the DH and skin trauma relationship.
They did say it'd be a bunch of patches on my back, then I'd have to come back in a couple days. I'm sure it's not fun or convenient, but if it helps give you some answers it's probably worth it!
I also really like that article for an overview - it's also what had me look at my birth control pill as a potential aggravation of my symptoms. I also like this one to help explain some of the finer details in somewhat layperson terms: http://www.csaceliacs.org/DermatitisHerpetiformisandDietaryGlutenIlluminatingaGut-SkinConnection.php
Given how readily available all of this information is, from both reliable layperson sites as well as in the peer-reviewed medical literature, I am so very flabbergasted that out of 8 docs including 2 specialists I saw, no one once considered DH, and when my family doc finally thought perhaps DH because of the gluten-link, she biopsied a lesion and not some normal skin + a couple lesions. Really hoping the lesion or maybe if she got some surrounding skin will shed some light on whatever this is. Also, I had to really try to convince her to give me a biopsy and she only did so when I went back to switch birth control since I thought it aggravated my symptoms. She was hesitant because I'd been gluten-free for 2 weeks the first time I asked about a biopsy. Given the IgA deposits can stick around for years, should that really have stopped her?
Going back to my dermatologist tonight for my regular light therapy and hoping he'll take a look at my minor wounds that have bubbled up like crazy, and some of my newer lesions that I've gotten over the holidays due to possible cross-contamination (hard to explain to restaurants/family how careful I'm trying to be). He's still convinced it's eczema. I'm not. Perhaps when this first started it looked like a multitude of other skin reactions/disorders, but now that things have calmed down and I'm exposed to gluten only when accidental, the lesions act and look uncannily like everything I've read on DH and I only seem to get worse now when I've eaten something outside my control.
Also trying to get back in with the allergist/immunologist who said "this has nothing to do with food" when he saw me and diagnosed it as an acute allergic reaction even though it had been going on for almost 3 months and I finally saw relief when I started avoiding gluten and dairy. A couple more months later ... I wonder what he'll think now!
Does anyone else find that if you get a paper cut, or a small scratch (e.g. my dog scratched me last week), it bubbles/blisters up and takes forever to heal?
I've read DH shows up in areas that are more subject to trauma. Does this also mean wounds can become blistered due to DH too?
I've found since the onset of my symptoms that minor wounds can become a problem whereas prior to the onset of my rash I had no problem at all with wound healing.
(I have no confirmed diagnosis but am very suspicious it's DH, waiting on biopsy results though the biopsy was of a lesion not of normal skin).
When I started getting super strict with gluten and dairy avoidance I started using a whey protein supplement from a company called Xocai. I'm not sure where you buy the stuff if you don't know someone who sells it, and I just happened to have a coworker who was always pushing these "healthy cacao" products on everyone. I was always super skeptical and hated the pyramid-like structure of the company. However, I tried the protein because I felt the usual tubs I was getting from sport nutrition stores weren't sitting well. I LOVE the product but unfortunately can't afford to keep purchasing it (I think it was about $160 for 2.5 lb). It tastes amazing, and tastes so much more natural than anything else I've tried, and I swear it helped me feel better. Just my 2 cents.
I feel like I'm in the same boat as you (waiting on biopsy results, 4 months into the rash), but have been gluten free for almost 2 months now (started suspecting gluten a while ago although I just became super strict in the last week) so just to provide some words of encouragement, it certainly gets easier! I do have some previous experience with experimenting with nutrition and diet for completely different reasons (athletic endeavours), so maybe that helped me make the transition more easily, but I had been eating freely for a while, so it was still an adjustment. Any cravings for foods that contain gluten or dairy are completely gone now and I've noticed further improvement above and beyond the initial improvement now that I've gone really strict. My family and friends have been very understanding (compared to when I previously had self-imposed dietary restrictions as opposed to a health concern - at that time they were certainly not accommodating or understanding but rather closed-minded and judgmental!) It's kinda ironic. But, back to the positive - my mother-in-law just baked the most delicious lemon muffins and lemon cake for my birthday, completely gluten and dairy free. A friend of mine who often does gluten and dairy free baking for her own interest has been a great supplier for treats for me to satisfy the odd craving too I don't particularly enjoy baking, but I do cook and have found that Thai is my new best friend. Of course you still have to be careful and make some substitutions but for the most part it's much easier to have delicious satisfying Thai food that's gluten-free than say, Italian or French! Once it's been a while and I'm healed up, I'm going to have more fun with sushi too (limiting it now to avoid iodine). Glad to have an "e-friend" in this journey
Thanks everyone! I so appreciate your comments and feeling like you "get it." I know my close friends and family are sick of hearing me talk about it, so it's nice to have a place here where people understand and also have stories to share. There were days when my itch and pain were so bad, the appearance of my body was so unsettling, the feeling of a complete lack of control and lack of knowledge around the situation, would have me just break down and cry, while trying to search for answers.
My boyfriend's mother works in pathology and thinks that if my family doc did biopsy the lesion only instead of "normal" skin, the pathologists will know that this is inadequate and will say so, so hopefully it won't just result in a false negative or misdiagnosis.
I spoke with my dermatologist tonight because I am still going for light therapy and see him regularly, and finally mustered up the courage to ask him if it could be DH (he's been so confident in his diagnosis of eczema that I had been afraid to bring up my own theories and ask for a biopsy). He said that he doesn't think it's ONLY DH, but he thinks it could possibly be eczema + DH, or eczema with a gluten sensitivity as a trigger, and that "at some point" we could do a biopsy for my peace of mind.
Since becoming more strict with my gluten (and casein and non-sea salt) avoidance, and at this point in my birth control pill cycle which was the same point when things started to clear last month, I am feeling like I'm on the mend again (I've been on the mend many times before though) so I'll see if being off that b.c.pill after this pack (switching to a non-oral contraceptive to avoid systemic effects) and continuing strict adherence to my diet can fend off a resurgence this time around.
I once competed in a physique competition and was obviously then eating very minimal gluten and dairy for different reasons, and I remember feeling like my skin and stomach in general felt so much better (clear skin on face which is sometimes a problem, usually struggling with little tiny skin-coloured bumps on my forehead - acne?) during that time. I haven't really had any GI symptoms lately. Of course, I've always found that the less healthy I eat, the worse my stomach and body feel in general and certainly I'd label me as someone who has always had a "sensitive stomach," even since childhood. I have had some problems with dairy in the recent past, thinking I was lactose intolerant for a couple years, but was able to reintroduce it. In the past few years I've felt like my brain and memory have been on a decline, and I'm only 29, but I just attributed it to being uber-busy with a lot of cognitive overload going on. I've also had some neurologic symptoms that I also attributed to stress - eye, thumb and toe fasciculations. These haven't been plaguing me lately. Looking back, I have had inconsistent GI problems when eating what I labeled "greasy food" like pizza or fast food (I say inconsistent because I didn't have a problem EVERY time I ate such a food). When eating poorly, I definitely craved a good cheesey carby combo. Although I'm a competitive athlete, full time student, and a practicing clinician, and have always strived (though not always succeeded) to maintain a healthy lifestyle including diet (I only say all that because you'd think that would all describe an energetic person), I would say that I have so often felt/wondered over the past few years why I feel like I seriously lack energy - I was questioning a lot in the past year why I'm so exhausted all the time, but again attributed it to occasional sleep deprivation and an overly busy and stressful life (which I'm sure contribute). Also, the way my lesions start out, they look perfectly harmless - just a tiny little skin coloured bump (before they go crazy and become nasty). Looking back over the past few years, I've had a fair number of such very harmless little bumps appear on my body, they'd stick around and go away and I would wonder what they were, but they never festered into the nastiness that I'm now dealing with...perhaps they were an early sign though.
After doing some reading on this forum and other places online, I wonder if all of the above have been signs of gluten sensitivity or intolerance. I really hope that the biopsy was done properly! After four months trying in vain to solve my rashy problem, I'll admit that there's probably a part of me actually hoping it shows I have DH, because it's something I can explain and control as opposed to continue on this guessing game. It also would allow me to feel comfortable requiring accommodations when eating with others, as opposed to now when I feel like I'm being "difficult" if I have to avoid certain foods when socializing. That said, I also realize DH isn't something anyone should WANT to have, and certainly I wouldn't try reintroducing gluten unless I completely clear, and even then I'd only do it very carefully and slowly if at all...it's not like it's necessary or good for you anyway!
Thanks again for all your feedback and stories shared.
Also thought this was neat: http://www.glutenfreejan.com/