https://www.celiac.com/rss/3-celiaccom-community-latest-posts-rss-feed.xml/Celiac.com Forum's latest celiac disease posts RSS FeedenHello, new here and new to the whole thing! My husband has been battling this rash and assorted digestive issues for years. He was diagnosed with contact dermatitis by the dermatologist, had some steroid injections and various creams over the last couple of years, and then in November he went to the ER and they said eczema and gave him steroid pills. This was after a huge bloom that pretty much hit him from head to toe, where it had been mostly arms and legs before. He finally concluded he was having problems with gluten and dairy, and made an effort to drop those from his diet. It wasn't perfect, but we got him mostly gluten-free and dairy-free. Then he finally went in to the doctor for a food allergy test. Celiac came back negative (although a pretty high negative, over a hundred points higher than my own and I'm not allergic to anything), and the food allergy panel came back with everything lit up except the fish -- and "highly allergic" on wheat and cow's milk, along with a high "moderate" on shellfish. All the nuts, all the proteins, everything. However, when I started looking at the celiac test yesterday, I realized it says a gluten-free or low-gluten diet will normalize it -- and he'd been mostly gluten-free for at least a couple of months. So I started digging, and suddenly came up with this DH thing. I cannot imagine why we've never run across it before, because we've googled everything to do with rashes that anyone could imagine, over the last year or so. But lo and behold, there it is -- everything about it is exactly what he has. You all sound just like him, with the cold water and the ice packs and every other thing that everybody is doing to try and stop the itching. Now the problem is how to get the diagnosis -- I'm assuming it takes a diagnosis to get the Dapsone prescribed, and he would apparently have to go back on gluten for two or three months to get the skin biopsy test to come up positive, which he REALLY doesn't want to do, because it has been getting better with this experimenting. Still a lot of infuriating bits that aren't going away and keep flaring up, but he doesn't want to blow up again and have to start over. I work in the doctor's office, and I did put a note through to the doctor to ask him to look into it, but that's always risky because doctors don't like when patients say, "Hey, I did your job for you, here's what we want." But there's a chance he might be willing to try the Dapsone, and it appears that we'd know pretty quickly if it was working. Anyway, I'm looking forward to mining this place for tips and advice in figuring out where we go from here and how to accomplish it. Sorry you're all suffering from this hideous thing, but thanks for being here!Wed, 20 Mar 2019 23:34:41 +0000View full articleWed, 20 Mar 2019 15:31:02 +0000Hey there ! hope all is well for you. I’ve been struggling with all sorts of tenidinitis and vertigo issues so I haven’t been on the computer much, but I would love any advice if possible. I have been on a very strict gluten free diet for 6 or 7 months. Still have low iron and just got results back. Would love your opinion. I prepare all food myself except once where I was likely glutened. I am seeing haematologist next week, but I was wondering what you think. Parasites have been eliminated as a possible factor. Have a great day everyoneWed, 20 Mar 2019 14:08:47 +0000So i recently had a baby and 3 months postpartum I started celery juicing and after juicing my stomach would be in so much pain. So I stopped it for a while and a whole month no pain or issues. I made an apt with a GI doctor to just get my blood work checked everything came back great except the Ema it was 1:20 he said it was strange because all the other Celiac panel test were negative my Ttg and the genetic screening even. So I made an apt with another doctor for second opinion she stated that it’s so low positive she wouldn’t be worried especially since across the border everything is negtive. I currently don’t have any stomach pain but it’s literallt driving me insane that I had a positive screen for my endomysial screen. If anyone can pleaseeeee help me with any insight it would be greatly appreciated !Wed, 20 Mar 2019 04:05:52 +0000View full articleTue, 19 Mar 2019 15:30:01 +0000Hello everyone, First time posting on the forum as I'm now desperately seeking answers to my ill health over the last few months. Around about November 2018, I started to lose all energy and have severe fatigue. My life had been busy and I had just opened my own business so I put it down to that. I'm a vegan as well, but have never had problems with energy before. I took myself to the docs in early january, where she said she would 'bet her house' that I was anemic before sending me for blood tests. The tests came back fine, I was a tiny little bit low on iron and my white blood cells were slightly off but she said nothing to be concerned about. She fobbed me off with iron tablets and told me I might be depressed. A week later, I went back (I changed docs) and she said I looked unwell, did another blood test and my white blood cells were even more off. Apart from fatigue, i've missed a period, had a massive change in my bowels, mainly diarrhea or soft stools. Most noticeably I feel like I need to go straight after food. Not to be too graphic here, but my stools are really stinky the last few months (I mean, seriously WTF and to the point my partner has commented on it when using the bathroom afterwards) and they are ALWAYS floating and different colours (a light, pale brown mixed with darker brown) and they look like my body isn't absorbing my food properly. I've lost my appetite and I'm only eating when I feel I need to I guess. I keep waking up in the middle of the night, and the last week I've had tingling and numbness all over my body. My sister is in the healthcare industry and she is pushing me to ask the docs about if it's celiac disease. I'm going back to my GP in two days for more tests. Does anyone have any information or ideas? Thank you so much for your timeTue, 19 Mar 2019 09:15:53 +0000(Photo links at end) Hey guys, Please bare with me as my journey has been a long one. Im looking for advice on if I should push my pediatrician to get my baby tested for celiac disease. I have a long history of celiacs in my family (my mom, aunt, uncle, and grandmother are all confirmed to have celiac and possibly family before that who werent diagnosed but had similar problems- doctors didnt really know about it then). Anyways, so my 1 year old baby (born Oct. 2017) has had a TERRIBLE, ITCHY rash since mid October/ November. When I initially brought him in they though it was a fever rash. Then it progressively got worse and started oozing. They then diagnosed him with impetigo (not sure if spelling right). He did a treatment of that with no results. He then got a bacteria biopsy (nothing showed but they still treated him for the other strain of impetigoin in case). Still no results. I was sent to a dermatologist where they weren't sure but treated him for scabies and some -itis (inflammatory) disease. Again nothing. I come back and they say they think it is this rare skin condition in babies called EPF (infatile eosinophilio folliculitis). They have never personally seen a case though. They say there is nothing they can do for him and it will go away on its own but it can take months to years. So at this point I have spent an arm and a leg on trying to figure out what is wrong with my baby and come back with a can do nothing. I mentioned to both my pediatrician and dermatologist that my family has a strong history of celiac disease and they blew me off and said he is too young. I had my aunt come down and visit recently though and she had dermatitis herpediformes before being diagnosed with celiac and thought it has a similar appearance. The rash usually starts out by looking like a bug bite. Just a pink lump and it has a much larger red circle around it. Next stage it starts oozing and blistering. Then my son usually scratches it so next stage is scabbing. (I try to put anti-itch cream and lotion but it only helps so much). I have attached 1 photo. What do you guys think? (Also the file size you can add is so small it wont let me attach photos, so let me know if the link works). https://photos.app.goo.gl/EwTg9xk3xw6Fdm5q6 (the not as scabby spots are new and will turn into the really bad looking ones) https://photos.app.goo.gl/DTrBmFqVKn3QWrnk6 (close up of some of the really itchy ones) https://photos.app.goo.gl/rXBKynD8YZrZtcHP8 (example of how some blister - I think they might all before he gets at them but not sure). Thank you guys for any feedback! -A concerned momTue, 19 Mar 2019 06:51:35 +0000I live with my mother as an adult, and I am Gluten Intolerant to where if I get around wheat, I get sick. I am sick accidentally three times a week because even though I am careful, something keeps happening. So I bought gloves and kept a few plates, silverware and use the same glass, i clean with a separate sponge, i wipe the counters down with bleach, and the handles. My Mother just put pasta in the fridge hot, and the air went up. that frightens me because i have cheese up there in a block, that is semi open. I also had an open avacado. Should I throw those things away, or is there a way to clean the cheese, only part of the pack is open at the top. Its just a concern. I spend so much time stressing about this because i have to share a kitchen. im this close to washing stuff in the bathroom and we all know how dirty that is..its really very sad...Mon, 18 Mar 2019 21:27:42 +0000Hello All, (I"m sorry if this is posted in an inappropriate location --- I was not sure just exactly where this subject would be most appropriately placed.) I have just started the Fasano Gluten Contamination Elimination Diet a few days ago, and I think I have a pretty good understanding of it, but I am still unclear about one aspect of it, and that is processed fruit and vegetable juices. In the Fasano Diet guidelines, it states that "100% fruit and vegetable juices" are permissible, but does that mean ONLY 100% fruit and vegetable juices that one prepares oneself, or does it also cover commercially made juices as well? For example, I have a lot of orange juice frozen concentrate that I would often use, but since that was prepared in a commercial facility, would it be automatically off limits? Likewise, what about V-8 vegetable juice, or other bottled or canned but 100% pure fruit and/or vegetable juices? I'm getting rather sick of just plain water! (I have to eliminate milk on my particular diet as well, so I don't even have that option). I did call the manager of the facility where they process the orange juice frozen concentrate, in Florida, and he assured me that they ONLY process products derived from oranges in that facility, not any other fruits, or even citrus fruits, much less anything that could potentially contain grains. So would that be good enough to assume that this frozen concentrated orange juice is OK for me to use on the Fasano Diet? Similarly, there is a 100% Concord Grape Juice sold at Costco under the "Kirkland" brand name, which is bottled in a facility that handles only that one product and a few other 100% pure, not-from-concentrate fruit juices. I would think that this would be sufficient guarantee that it should be safe for a gluten-free diet, even on the Fasano Diet, but is that an unreasonable assumption on my part? For that matter, I do not understand why plain tea (black or green) is considered OK, but ANY herbal teas are not. I just wish that Dr. Fasano and his team were more clear about acceptable beverages under this elimination diet, and gave the rationale for what they would consider acceptable or not in that regard (they are also very ambiguous on spices, as well, which is causing me lots of uncertainty and annoyance.)Mon, 18 Mar 2019 20:07:29 +0000View full articleMon, 18 Mar 2019 15:34:02 +0000Hi... Has anyone ever experienced a really bad coeliac relapse? I've been completely gluten free for a year since being diagnosed but i was fed incorrect bread at a team away day four weeks ago, i then accidently ate a big of spaghetti 5 days later. I have been so ill since, my belly is still so bloated, I feel so weak and i have been experiencing the dizziness again plus headaches, numb hands and a numb face. I have even been checked over in hospital. does anyone experience these symptoms???Mon, 18 Mar 2019 07:39:15 +0000View full articleSat, 16 Mar 2019 19:38:02 +0000Sat, 16 Mar 2019 19:35:58 +0000Hello All, I'm just curious about the possible link between iodine intake and subsequent aggravation of dermatitis herpetiformis. Is this a generally medically and/or scientifically recognized link, or is it one that is just more anecdotal in nature? Given that I have not had any formal contact with doctors regarding my DH (so yes, self-diagnosed, but 99.9999999999% sure), I am not sure now if I had read of the presumed link between iodine and DH only here in this forum, or if it was elsewhere in all the blizzard of online and library resources touching on celiac disease and DH that I'd read in the past year+. Also, on a secondary note, I had a strange thought regarding this subject, presuming it to be a fact. If iodine aggravates and causes to flare up the pre-existing gluten antibodies in the skin of those of us with DH, might it be at least theoretically possible to totally load up on iodine-rich foods --- like say, eating a whole bunch of kelp --- to purposely cause all those dormant antibodies to fire off in one fell swoop and "use them up", so to speak, thereby accelerating the healing process (if being miserable in the short term)? Has anyone ever heard of anyone using such a strategy to speed up their DH healing time?Sat, 16 Mar 2019 18:03:21 +0000Hello All, As you may have read in my other recent threads, as of a couple of days ago I have decided to try the Fasano Gluten Contamination Elimination Diet, for at least three or four months, to both try to resolve my recurring dermatitis herpetiformis (DH), and to help me determine which (if any) conventionally-considered gluten-free foods might have been causing me these ongoing problems (suspects are purity protocol oats, teff, corn, eggs, and/or buckwheat). Given that I am doing this for DH, I apparently also have to avoid any high-iodine foods, so I will be eliminating iodized salt, all dairy products (both the iodized salt and the dairy products I actually already gave up seven months ago), all seafoods, and most eggs (I might use one or two in a meatloaf, that'd be about it). The guidelines of the diet state that any fresh and whole fruit and vegetable, and all fresh and unprocessed meats, should be OK. My question for anyone is this: are there any OTHER potential pitfalls or problem foods that I should avoid on this Fasano Diet, keeping DH in mind? For example, the guidelines seem to allow potatoes and tomatoes, although I have read that some people have problems with nightshade family vegetables --- potatoes, peppers, tomatoes, eggplant. Elsewhere, I have read indications that foods high in oxalates might be a problem for others --- chocolate (I was going to avoid anyway), spinach, rhubarb, etc. And in yet another reference, I have read that for some people, vegetables from the carrot/parsley family ---- carrots, celery, parsnips --- can be problematic. Obviously, I cannot avoid ALL of these potentially problematic foods, or I'd be left with just water! So I'm just wondering if anyone has any good advice for what I should watch for on this diet, again taking into account that I am doing it to resolve DH and not any gastrointestinal symptoms (which all cleared up long ago for me). Thanks as always.Sat, 16 Mar 2019 17:43:14 +0000Hi there, I have recently been diagnosed with Celiac Disease and just moved to New York City. Does anyone recommend a Celiac Specialist here in the city?Fri, 15 Mar 2019 17:18:23 +0000Hello All, After looking into trying the Fasano Gluten Contamination Elimination Diet in order to try to get my recurring outbreaks of Dermatitis Herpetiformis under control despite having been gluten-free for just over one year, I am terribly discouraged by the seeming futility of the endeavor. Firstly, having read the entire medical paper in which the Fasano Diet was first presented, it seems to me that it is implicitly geared towards those celiac patients who ONLY have gastrointestinal symptoms, which typically occur within 24 hours of ingesting any problematic food. This would make the diet's two to three month trial period more than enough for THOSE celiacs to clear their systems of any possible gluten-related symptoms, as well as make the determination of problems caused by the re-introduction of any problematic foods rather quick and obvious. However, none of that is true for those of us with DH. Despite having been gluten-free for 13 months now, how do I know that if I go on the Fasano Diet, my system will be cleared of symptoms (and the gluten-related antibodies in my skin) within even a few months? What if it would inherently take me a few more YEARS to really rid myself of gluten-related antibodies in my skin, Fasano Diet or not? I simply could not eat such a highly restricted diet for that long --- and I have little doubt that malnutrition of one form or another would crop up after years on such a restricted diet. Also, regarding the Fasano Diet, as restricted as it is, apparently we with DH have to avoid high-iodine foods as well. So, there goes the milk, and the other dairy products, and the fish, AND the eggs that are part of that diet! What few foods are then left on that already limited diet would seem to make for an unrealistically limited and unhealthily restricted diet. But the biggest problem I see here is the (unknown) lag time between problematic food consumption and display of symptoms with DH, a lag time that I STILL have no clear idea of. Days, weeks, months? So even if the diet did seem to work in clearing DH after a few months on it, how could one realistically evaluate foods that are reintroduced on it, when one does not even know how long the symptoms might take to appear? Again, this seems geared towards those who ONLY have gastrointestinal symptoms, not DH. And even if I knew that my symptoms usually appear within, say, two weeks, what happens if (when) I reintroduce a food, and it DOES cause symptoms --- am I back to square one, and have to do the entire initial diet again for several months? And even if I happen to NOT reintroduce any problematic food (which, given my present situation, would be essentially impossible), then I could realistically only reintroduce maybe one food per month --- so how many YEARS would it take me to get back to a semi-normal gluten-free diet, even in the best case scenario? To be honest, I am so depressed right now (as I squirm from itching from a DH outbreak whose cause I cannot begin to guess at), that thoughts of suicide are passing through my head.Thu, 14 Mar 2019 17:18:05 +0000View full articleThu, 14 Mar 2019 15:31:02 +0000Hi again, Despite the recent negative tests, the dr put me on dapsone. The itch has mostly gone away. New blisters are no longer forming. However, I have two questions (maybe better for the dh forum?). How long before the red dots go away? They have faded significantly but are still visible. Also, should I be concerned about dapsone giving me a headache? Just had a blood test (been on it a week) and so far, bloodwork looks ok. Thanks! LaurelThu, 14 Mar 2019 14:31:31 +0000I never risk eating out. But I have heard great things about Twisted Root Burger being gluten free, so tonight, traveling, tired, and hungry, I decided to try it. One French fry in and not bite of burger yet, the Nima tester came back positive for gluten. I am so bummed.Thu, 14 Mar 2019 04:01:45 +0000These are nice new news articles explaining why gluten and lactose can be found in medicine and what the common contamination rate is. Just saw it tonight and thought it would help someone else to post them. https://www.nbcnews.com/health/kids-health/why-do-pills-have-gluten-ingredients-medications-may-trigger-allergic-n982876 https://www.yahoo.com/news/gluten-lactose-drugs-study-raises-194717603.html I hope this is helpful but it is not medical advice. Posterboy,Thu, 14 Mar 2019 02:24:08 +0000For those just starting out, please see this article: And this post, which is rather old, but mostly still useful:Thu, 14 Mar 2019 01:01:34 +0000After months of being sick, and tested for everything else, all negative, sick of being sick, I tried a gluten free diet. It definitely helped, except for accidental gluten, and taking ibuprofen... Can’t face being tested, as I appear to be very sensitive to gluten now... But, I’m really struggling not to lose more weight, and my periods have stopped. On a bmi scale, I am on the edge of underweight, but look ill. I was slightly gaining, prior to ibuprofen and accidental gluten, but lost another eight pounds since... Starting to be scared to eat, or eat around people eating gluten.... can anybody else relate?Thu, 14 Mar 2019 00:02:34 +0000Wed, 13 Mar 2019 19:29:23 +0000View full articleWed, 13 Mar 2019 15:30:02 +0000