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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

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  1. Hi, I’m a 32 y/o male and I developed extremely itchy bumps symmetrically on my body over the past 2 weeks in these places: elbows, outer thighs, knees, below the tail bone, neck/upper-back and a few in the pelvic area. Some of the bumps are semi-transparent and filled with clear liquid. Given these specific locations and specific nature, I was certain that it was DH. I consulted my doctor yesterday and she said she doesn’t think it’s DH, but rather a contact reaction like fragrance in my detergent and/or toiletries (I haven’t changed any of the products I use in the past several months). I have a nut  allergy and have had skin contact with nuts in the past and it is never symmetrical (usually local) and I have accidentally eaten nuts in the past and that reaction is typically swelling of the throat, hives allover the body and disappears within a few hours. Its never long-term like this. Here are some pics of my elbow. Other symptoms I’ve been experiencing over the past year, that have yet to be solved by doctors, are hair easily falling out (significantly thinner hair shaft) and occasional pressure in my intestine on my left (often alleviated by burping). Also I’ve been having daily brain-fog/fatigue for the past 20 years. I’ve had a blood test for a gluten allergy that came up negative but I know that doesn’t rule out a gluten sensitivity. I’ve tried cutting out gluten last year for about a month and didn’t notice any improvement (but maybe it wasn’t cut out long enough?). So I’m trying again against my doctor’s opinion to see if at least this rash, the stomach pressure and hair symptoms change. So given all of this info, do you think these images indicate DH? I really appreciate any help. Thanks! Theo
  2. Hi All   Just wondering how many of you suffer joint pain when you breakout? I still haven't had a dx of what is going on with me and if any have read my story - I went gluten-free on my own suspisions and now would have to challange to find out for sure/ I just saw an allergist today and he thinks maybe Lupus bc based on my joint pain and areas he thinks Lupus may be it. I was just wondering how common Joint pain is on the topic/DH? Is pain in the joints/tissues commone when you get outbreaks? When I get itchy bumps I also get joint/tissue pain with them on my elbows knees    I got one on my collar bone a few days ago and then my chest plate area and the area in between my breast (sternum maybe?) was so tender and sore I could barley pick up my children - it was like I pulled a mescle feeling but I didn't. That lasted for 3 days and now its gone.  Now when I breakout they raise itch for seriously one second and then don't bother me again but just hand around for a few days and look like a little this consistent with DH on a gluten-free diet to come up itch and then leave you alone??    Thanks so much   btw - are you these days? Did you ever use Dapsone? I saw your old posts about your rash getting way worse after going gluten-free that is so scary What is your current status? Sending HUGS!!    
  3. Hey y'all! This is my first post on any forum, but I have came to my last straw, so I decided I may be able to find some answers from some of you who are diagnosed with Celiac or who were once misdiagnosed. Sorry in advance, this might be lengthy.   I was diagnosed with IBS in middle school, I am now 21 years old. I do not remember IBS ever affecting me to the extent it is now. I was a soccer player for 17 years, very active, raised on whole grains and healthy food, etc. In college I began to run marathons - almost qualifying for Boston after my first marathon. However, 2013, that is when my "IBS" started to go downhill pretty bad.   Thanksgiving 2013: I got so incredibly sick immediately after eating my meal. My stomach was so distended I looked nearly 6 months pregnant if not more... I could not lay down on my stomach, I could not touch it, I was bawling my eyes out and my mom was contemplating if I should goto the ER or not. I did not goto the ER because everyone knows that's expensive as heck and half the time you get stuck with a doctor who is arrogant, or maybe that's just my luck. However, about a week and 1/2 later, I was driving to the gym and had the most intense pains in my stomach just like Thanksgiving. I could not continue driving and had to put my emergency lights on to speed home. I was then taken to the ER and put on IV's, etc. The doctor was VERY arrogant and I remember my mom was going off on her because she was saying I just had a "belly ache." Bull. We did a CT scan and come to find out my small intestines were inflamed along with my pancreas. My grandmother then was able to get me in with her GI doctor stat instead of me having to wait an entire month, thank God.   A few days after this ER visit... I got a rash all over the my thighs that looked like bug bites. Let me add that I NEVER get rashes and it was not chicken pox or shingles. I took pictures of it and made sure to show the gastroenterologist at my appt. When I explained my symptoms and the ER visit, etc. I also showed him the pictures of the rash. I asked him if it could be Dermatitis Herpetiformis. He literally didn't even EXAMINE the picture, maybe looked at it for 2 seconds and disagreed with my opinion. We did a blood test to see if I had Celiac and I tested negative. So, we thought about Crohn's being a possibility.   Symptoms: - Consistent and explosive diarrhea every morning, sometimes having to RUN to the bathroom. Will go 3-6 times in an hour and a half. - Or I have constipation. Never a normal bowel movement, basically. - Some stool will be floating in the toilet, some food not digested will show also. - FATIGUE OUT OF THIS WORLD causing me to put running on hold and is affecting my every day life. - Joint pain (more recent) mostly in my knees and ankles. - Irritability and depression (when feeling bad). - Stomach cramping, trapped gas or excessive gas which is very stinky, major bloating every day. - Headaches - Dry skin, brittle nails, brittle hair - Circles under my eyes   July 2014: After months of stomach issues worsening, I finally got a colonoscopy and endoscopy by that ridiculous GI doctor. Did more blood work, celiac was negative, but my lipase levels (pancreas) were still slightly elevated - meaning I wasn't breaking down carbs and fat correctly.. Despite my cries of pain with my stomach and the inflammation of my small intestines, SOMEHOW both scopes showed A PERFECTLY FINE STOMACH. There is NO way.... I don't think he took more than one biopsy, so... We left very disappointed and had no answers. He told me to "eat more fiber." I eat a very healthy diet full of fiber... He said my intestines then were not inflamed. But then, I was not eating a diet high in gluten.     February 2015: the same dang rash popped up on my legs but even WORSE and it lasted for about 1-2 hours and was itching like CRAZY. Would come back every night for about 3-4 nights. I had many more pictures of this rash that showed the severity of it, but sadly only could find these two pictures. --- YES I KNOW THIS PICTURE IS QUITE REVEALING BUT IT'S THE BEST SHOT I HAVE OF IT WHEN IT HAPPENED. (SORRY). The rash was also on my forearms, but mostly covering my thighs and bottom.   Currently: I have woken up twice in the middle of the night (back to back nights) with the most NAUSEOUS feeling and in such pain I have to curl up in a ball. My pain would be lower belly and extremely painful. My fatigue is CONTINUOUSLY getting worse and worse to the point where I'm literally about to give up... My gas is EXCESSIVE and stinks terribly. I have some poop that floats in the toilet. Still have diarrhea EVERY time I goto the bathroom. If I don't goto the bathroom in the morning, I'm constipated all day long and will barely pass gas if severely constipated. My head is throbbing, my joints are hurting more and more each day and I am constantly bloated... I am so miserable and have had no answers, I am starting to lose hope that I will ever feel basically alive again..   I really need some input on this whole situation... I haven't been tested for Celiac since that winter/last summer, but I have heard of many people getting negative blood tests and a positive stool sample or positive biopsies... I have also heard of people being misdiagnosed for years who have had IBS but in reality it was Celiac or it eventually turned into Celiac.   Thanks in advance to anyone who is able to help me out for the time being... Sorry again for the picture, but I'm desperate.     Mary
  4. Please document your rash in photos, print them out & take them to the derm @ your appt. The rash may not look like your photos or be flaring when you see the derm. You can't rely on just telling the doc what it looked like, you need to show them!   Do NOT get a biopsy if you have taken oral steroids or used topical steroids in the past 2 months.   DO NOT go gluten free or even gluten light until AFTER the biopsy has been performed.     
  5. Hi   New user here, I apologize if this question is posted often (I don't frequent forums and am somewhat unsure how to use this!)   I am a 25 year old female who recently started showing symptoms of a a DH rash on my body (on my lower back, buttocks, upper thighs, elbows, and then a few randomly on my legs and arms) for about 4 months now, and it has gradually gotten worse   I have suffered from eczema and sensitive skin all my life, and initially put it to be just that. However when they did not go away I researched a bit online and found my rash to match up almost exactly with dermatitis herpetiformis.   However, I was also wondering how to tell the difference between dermatitis herpetiformis and scabies. I have heard scabies is very contagious and I have had this rash for some time now and no one in my friends and/or family have contracted anything! However, I would still like to rule out scabies to be safe.
  6. I'm totally new to this forum and the 'world of celiac'. My head is trying to make sense of a lot of things but at the same time, a lot of unexplained things are now beginning to make sense. I haven't been tested yet so I don't want to jump to any conclusions but it really does all seem to fit.  I've always had 'stomach issues' but from about 13 years old, my digestion became a serious issue- intense painful cramps that would leave me in cold sweats, almost passing out, extreme boating and very irregular bowel movements (constipation and diarrhoea). I was diagnosed with IBS and I struggled on. Then when I was about 27 it peaked again and after little help from my doctor I went to a private nutritionist (I'm in the UK) who recommended a gut healing diet for 3 months. This was a 'clean diet' with no processed foods and therefore next to no gluten. My diet had previously been extremely high in gluten. This diet changed my world. I felt I was cured. We then reintroduced each food group to see if I was intolerant and I came to the conclusion I was intolerant to dairy and cut that out (mostly) ever since. My stomach was far from perfect but improved greatly on before, I continued to have some issues but just dismissed this as a sensitive stomach and since it was such an improvement, it never bothered me that much. I never went back to eating the same level of gluten as before and moved to more wholegrain types. 2 years ago, I became more interested in nutrition (and became very fit) I started first of all by increasing my protein and then began eliminating processed foods. Again, this left me with an almost gluten free diet- I only ate rye about once a week. I stuck to this for about a year and felt great. I did have 'cheat meals' on special occasions (invariably included gluten) which left me very ill- usually waking up with intense cramps and sweating during the night and then being violently sick. I thought that by eliminating processed foods, I'd made my system over sensitive. I lost a lot of weight and was becoming a bit underweight so with getting a bit skinny and the over reaction to cheat meals, I decided to reintroduce some 'normal' food again and try be more balanced. That was about Feb this year.  In March this year I became really sick, I had an inflamed muscle in my neck, fever, confusion, lethargy, sore throat and some blisters on my face. The doc thought I had a nasty upper respiratory infection and I got some antibiotics and a few weeks later, I was ok-ish. I was still REALLY tired and the blisters on my face were still there but I was well enough to carry on working. I've had an increase in GI issues- severe bloating, wind and very painful cramping when moving bowels but no pattern to the problems and not an every day thing. My main complaint has been the blisters on my face- they are tiny but really painful. They last a couple of days and just pop up around my nose and chin. I've been to my doctor countless times and they've had me on 5 courses of antibiotics (thinking it could be impetigo) and 4 courses of acyclivor (thinking it was herpes).  Last week I got really sick again- fever, achy, confusion and extreme fatigue plus a worsening of my blisters. I went to the doctor and they decided to give me the antibiotics and antivirals all together. As I was leaving she asked if I'd ever been tested for celiacs. I told her I hadn't and was a bit confused- I had face blisters, wasn't that a stomach thing? She said once I'm feeling a bit better to come on for some blood tests.  I've since been looking into celiacs and it's like OH!! Has this been my problem ALL ALONG?!!  I've read I need to keep to a diet including gluten so I can be properly tested. I am a little anxious about how bad I might feel over the coming weeks/months. But I do feel optimistic that there may be an explanation for how I've been feeling and that I can hopefully resolve it by controlling my diet.  Has anyone else had experiences where dermatitis herpetiformis has been on their face? I'm worried about it getting worse while I continue to eat gluten but I haven't found anything that helps with the symptoms. Any suggestions for how I can cope with the blisters until I can eliminate gluten?
  7. I don't know if I have celiac but I want to get tested. About a year and I half ago (I was only 17), I got a bit sick and then after a few weeks I got these blistery things on the right side of my forehead (my right, your left). I went to a clinic and the nurse looked at it and said it looked like shingles. So I went to a doctor and told him what the nurse said. He said it must be and told me how my immune system must be pretty bad because most people only get shingles when they are older. I was under a bit of exam stress at the time. I've been feeling kind of sick the past few years. It's hard to explain. I was quite chubby as a child and as I got older I just lost weight. Not for any particular reason. I assumed it was because I grew but even though I'm quite skinny my body doesn't feel or look very good.    I also have become pretty pale and I'm not sure if I'm anemic but I think I'm going that way.   So I researched stuff about celiac and the dermatitis herpetiformis pictures seemed to match what I had better thing shingles.   My "shingles". I had a headache for about a day before the stuff appeared on my forehead. It was a kind of sharp pain and my shingles were a bit itchy. I've heard that they're not as itchy as dh but how itchy is dh. It was itchy to the point that I sometimes felt the urge to scratch it which I admittedly did a little bit once or twice. The one time was after I came out of the shower and it peeled off a bit. Kind of like wet paper. That's the best way I can explain it. It looked a bit purple-ish.   I was gone in about a week. I was on meds for shingles but who knows if that even helped it go away?   I didn't take any pictures but I wish I did   Edit: I also just wanna add that I do still have skin conditions. I have acne which could actually be dh. I also have red bumps (which are often filled with white fluid) on my legs, the back of my arms, my chest and (worst of all) on my back. By worst of all I mean there're lots there..
  8. If you're in the Denver metro area, there is a doc in Arvada, Co. who knows all about celiac as well as dermatitis herpetiformis because he has it! This info. is from a fellow celiac friend of mine who uses him. His name is: Dr. Mark Ptaskiewicz 7701 Sheridan Blvd, Arvada, CO 80003 (303) 338-4545   She says her HMO is Kaiser Permanente & only people with this insurance can use him.    
  9. Hi everyone!  I am new to this forum as I just discovered I have DH.  I had been diagnosed with a severe case of Herpes Simplex 2 for about 5 years before my doctor performed extensive testing that showed I do NOT have HSV 2.  I had always loved my whole grains, thinking I was eating healthy; little did I know!!  Only a month into my gluten-free diet, I am still having DH symptoms.  I am trying Dapsone for the first time, so we will see how it goes.   The point of this post is to find out what treatment options work for the rashes and blisters, what you have found effective or ineffective.  I would really like to know how other people deal with this ailment in their day to day lives.     I prefer to use aloe vera directly from the plant.  I have found this to be extremely effective in healing the rashes more quickly.  I also use an rX lidocaine (2.5%) cream which alleviates the itching and burning.  And rX steroid cream applied 2-3 times a day seems to help as well.  I take epsom salt baths and rinse my mouth out with salt water (I get DH orally) which burns but helps heal the lesions faster.  I am one of the unlucky ones who gets the rash in my buttock/genital area (sorry if TMI).   Using the lidocaine and steroid creams mixed with aloe really helps!     Also, what do you guys tell people who ask about the rash?  Mine tends to resemble a burn in the early stages on my hands, so I just tell them I had a kitchen accident or something.  I wish people would mind their own business, but I realize that the rash looks horrible and people might think it is contagious.     Thank you for replying to my post!  Bless you all 
  10. Is it possible to get outbreaks of DH in areas that are not Knees, Elbows, Back, Shoulder Blades?   Hello,   If you have been tested positively for DH can you please share with me about the locations of the outbreaks on your body?    My dermatologist insists that my itchy, recurring rash is not DH, but maybe a contact Dermatitis that my non-existent cat gave me, or from poison oak despite that I am no wilderness girl these days...I have been told by a gastroenterologist that I most likely have Celiac as I have been dealing with all the things....all the symptoms and I have never had a biopsy.    I have this "OMFG WT!!!! AHHHHH" rash all over the backs of my legs, shins, and a couple spots on my arms right now, I swear, I can't believe how intensely the itching is, my goodness!!!   If you can share the locations of your breakouts with me, it will help to inform and answer the question:   Is it possible to get outbreaks of DH in areas that are not Knees, Elbows, Back, Shoulder Blades?
  11. After lurking around these forums I am finally making a post. Just looking for some insight/advice from experienced people, so thank you in advance.   I will try and make this as short as possible I promise!   For as long as I can remember I have had GI issues. The usual bloating, gas, diareah, constipation. Had food allergy test and blood test when I was maybe 10-13 years old and of course nothing. Just the usual "Irritable Bowel Syndrom". Fast forward to last year-I am now 28 years old-   I started to get incredibly itchy bumps on my elbows that lasted maybe 3 weeks. Never went to doctor and eventually just went away A couple months after that I got another itchy rash but this time on my thighs (not the groin but the top of both thighs, symettrical). This was so itchy that I went to my doctor. Doctor said its probably contact dermatitis. Gave me a cortizone cream that did nothing. 2 weeks later went to Dermatologist. Dermatologist did not know what it was but said looks like eczema. Gave me corbetisol which i think did help but not for long. Around this time I started to read about celiac and gluten. Immediatly i thought this has to be it so I tried gluten free and rash went away. However I dont know if it was the clobetasol or the gluten free. Here are some other interesting facts that should be factored in:   around this time I find out my first cousin (my dads brothers son) was just diagnosed with Celiac by blood test and endoscope My dad has Type 1 diabetes since age 10 my uncle, his brother has type 1 diabetes since age 9 reason for including this is the auto immune connection So at this point im kind of doing a gluten free diet but really only about 70%. The rash comes back and i go see a different dermatologist. He has no idea what it is. I ask about DH, and he says hes only seen 4 patients in 25 years with DH but he says ok ill do a biopsy. He does a biopsy ON THE INFECTED SKIN which is a no no. Plus the rash was 3 weeks old and already itched to the point of bruising. Of course biopsy comes back negative for DH. Doctor says its def not the alternative diagnosis's listed like eczema, scabies, etc. So 3 doctors literally said "i have no idea what this is".     So, finally on to my question. I went 80% gluten free for the past 6 month with no rash and it did help with the GI symptoms. However, I NEED a diagnosis to be 100% gluten free or else I just cheat. So 3 weeks ago i started eating gluten again pretty heavily. The rash is just starting to appear on my thighs again. Its never appeared on the elbows except the first time.   Is it possible to have a 3 week lag time from starting to eat gluten and getting the rash?? Everything I read says usually 24-48 hours but its never been that way for me. Both times I reintroduced gluten it was about 3-4 weeks until the rash appeared. Right now i am trying to get into a derm who is knowledagble on DH but thought maybe you guys could give me some insight or thoughts.   Thanks a ton and sorry for the long post!! Oh and I will post a picture as soon as I figure out how to.  
  12. Getting Rid Of Dh

    Hey everyone. Just wanted to say I am new here but I appreciate all the information everyone contributes. I was recently diagnosed with gluten intolerance. I do not have any of the digestive issues that come along with it but I get a terrible rash (DH) primarily on my knees, elbows, buttocks and now face and upper back. I have been trying to detox and strictly watching what I eat. I have been eating nothing but fruits, veggies, lean meat and drinking water like mad the last month and a half now. The only thing that seems to keep my skin under control is if I take a corticosteroid. If I stop taking it, within a few days I start to get the rash again. Does anyone know of a good detox to help balance the gut and flush gluten? I am currently on a probiotic, fish oil, drinking apple cider vinegar and eating sauerkraut by the forkfull. Thanks in advance for any advice and help.   In good health!
  13. Need some help! I have suspected that I have a gluten intolerance for awhile now due to my IBS and just not feeling 100%. Well about two weeks ago my whole body started to rash, no bumps, no visible signs of anything wrong. I ruled out the typical reasons for change in foods, no change in soap, no change in laundry soaps, no new pets, no bugs in my bed, no new meds....basically nothing had changed in my life. I went to bed fine and woke up the next morning with the most intense itch I have ever had. I dealt with it a week and then went to family doctor as I was itching so much it was embarrassing! She walked in the room and said "so you have the winter itch" which means I have dry skin....umm no my skin is NOT dry. I know what dry skin feels like and looks like and I do not have dry skin. But she said to go home and take short warm (not hot) showers and to start using an intense moisturizing shower wash (like aveeno for eczema) and to use Sarna lotion or again an eczema lotion. So. That is exactly what I did!! I followed her instructions to the letter and now a week later the itch is way worse and I have now developed a rash along with pinhead size bumps on my arms, shoulders, chest, neck, jaw and legs. Every night for two weeks I have stayed up scratching and surfing the web for what I have and to keep my mind off the itch. I used a whole bottle of sarna lotion in less than a week to try and stop the only gets WORSE!! For the past two nights I have read and read and read about DH and I am convinced that this is what I have!!! And then this morning in while washing my body with my new recommended body wash I realize that it is made with WHEAT AND OATMEAL!!! No wonder I am getting worse if I really have DH!!! I called my doctor today and have an appointment for Monday and I am hoping she will send me for some test....what test do I need to ask for? I plan on going gluten free soon and know that I have to have my test done befor I can go gluten-free. So the sooner I get all the test the better. So basically I need all you wonderful ladies past experience in pointing me in the right direction. I have skipped around this forum and have already picked up a few things but hope for some more guidance in getting my diagnosis! Thanks for all your help and words already written!! Jennifer
  14. My son is 6 and he came down with a really bad rash in December so we went to the Dr, they thought it was Staph, but it was not. We then went to the Dermatologist and she thought it was DH and told us to go Gluten Free and then we went back for the biopsy and she said that it looked so much better that we could just skip the biopsy. He then started really complaining of a tummy ache, pretty much every night and sometimes during the day. So our pediatrician sent us to a Peds GI and they wanted the biopsy done, I had taken photos to show them, because he did not have the rash at the time. Biopsy came back negative, I do not know if it was because it was not active or if he does not have it? Well last week the he had two spots that were getting really red, so I took him to the dermatologist, and he said that looks like classic molluscum, well it exploded right now it is on his face, knees, elbows, feet, and hands. He also has spots all over. I guess I am just wondering what everyone else on here thought. I am new and would like to post a picture, but I am not sure how. Thanks.
  15. Hi,  I am wondering if anyone has had a good experience with a Dermatologist? We have an appointment at the University of Chicago, but just wanted to see if anybody knew of someone that could maybe help us with my son's rash.   Thanks again?
  16. 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!  
  17. Hi! This is my first post   I'm still in the middle of the diagnosis process (blood work for food allergies-negative, colonoscopy/endoscopy-scheduled, elimination diet-successful).   To make a long story short, I'm highly sensitive and have been off gluten (all grains except rice) and dairy for 11 months. I wanted to try reintroducing gluten (while controlling for dairy) at least one more time before having all of the unpleasant GI tests done.   The first time I reintroduced gluten since my initial gluten challenge was this February (9 months after going gluten-free). All of my usual symptoms returned, except that I got a weird new rash on both of my thighs. I only had one serving/day of gluten for four days and the rash showed up after a couple of days. So I stopped eating it, and the rash went away.   Then I reintroduced it again for four days in mid-March (10 months) and the rash reappeared on my thighs, again after a few days. So I stopped eating it and went in for allergy testing--negative.   Then last week, I was glutened from a cross contaminated olive oil "mayonnaise" jar (I'm that sensitive), and the rash reappeared.    I've had a total of 4 doctors look at it and none of them have any idea what it is.    It doesn't itch, it's completely smooth/flat to the touch, and it doesn't blanch or fade when I press on it. My only guess is that it's a mild case of petechiae or purpura, as it looks like I'm bleeding under my skin. It's primarily on my thighs, but I have a bit on my hips as well. And it does go away, albeit gradually.   My PCP/internist said she could refer me to a dermatologist, but she thinks that it's more imperative that I get in to the GI for a colonoscopy/endoscopy.    Any ideas? I'm so sick of being sick
  18. Please help me. If you post your email I will send you photos of her rash. Our pediatrician is clueless and the GI doctor doenst have any appt till December. Want to know if this rash is indeed the celiac rash. details: My sister and niece have tested positive for celiacs my baby is 11 months old Through trial and error I realized while breastfeeding if I ate gluten she would be cranky that night, constipated for a few days, and a rash around her neck and behind ears. Last monday she had a bite of breaded GLUTEN fish..... all the next day she eas miserable. Thursday she developed a rash over her neck and trunk and now Monday its on her face and all over. Looks like zits or tiny blisters. She has not pooped since Monday. does it sound like celiac? Can I emakl syou a picture please??? Im very worried. She seems hapoy and comfortable but scratches at her neck.
  19. I found this forum after several days of researching on the internet and I have been reading through the threads of this forum. I’m so grateful that so many have shared their knowledge and their journey. It has helped me to feel less alone and more confident in what I must do.    I'm sharing my journey in the hopes that it will help someone else who is searching for answers too.   Prior to the appearance of this rash 15 months ago, I have had an unbearably itchy back for at least 7 years and at times I could not even tolerate any pressure from clothing. Nothing would soothe or provide relief from the constant itch.   10 years ago I was diagnosed with Dupuytren’s contracture in my right hand. Within the last two years it has developed in both hands and seems to be developing in my feet.   5 years ago I was diagnosed with Osteoporosis ... I was shocked as I try to lead a healthy life ... exercise, eat well, etc.   15 months ago (March 2012), immediately following a nasty bout of flu, I developed  An intensely itchy/burning rash that has been present constantly ever since. It began on upper chest, then went to my back and buttocks and now has slowly spread to limbs and neck. Raised liquid filled bumps appear that bleed profusely and repeatedly after being scratched and do not heal for months. Nothing soothes these lesions. Frequent headaches on waking Frequent lower abdominal stomach aches after eating  An very occasional feeling of discomfort in my left side (?kidney) Over the last 15 months I have eliminated using, or used only infrequently: all known allergenic foods scented soaps, shampoos, moisturizing lotions showering only twice a week (chlorine?) and because it hurt! contact with pets dyeing hair fragrances laundry soap (rinse things x 3) multi vitamins alcohol     I have had multiple tests over many years and have been advised to avoid eating many foods, and I do. Anaphylaxis is a frightening experience and I've had two incidents some years ago.   Just a few days ago, on the morning of May 7th after a second sleepless, crazy irritable, itchy-all-over night within a week I realized what the culprit was. Both evenings I had eaten a double helping of fresh home made King Arthur bread! Poisoning myself with "goodness". How could I be so naive?    With all the other things I am allergic to I had forgotten that in 1991, the allergist I saw he must have told me to eliminate wheat from my diet because it's one of the things he underlined on the sheet of things I should not eat, but he didn’t emphasize it or I would have remembered. I found the information in my file when I was gathering all my notes together for my appointment to see my allergist next week.    So over the last couple of decades I have not been eliminating wheat from my diet and unfortunately for the last year or so we have been baking all our bread at home and consequently eating more than we normally would because of how good it is.   After finding this forum and reading many of the threads, I now know what I am dealing with.  My symptoms and visible lesions suggest Dermatitis Herpetiformis.   Upon realizing this a couple of days ago, I completely eliminated gluten from my diet.   All these years searching for an answer ... I now have hope that my quality of life will be restored and that maybe some of the damage already done to my body can be at least halted if not reversed. The photo in the top right of this page could be me!   I have an appointment with my allergist next week and I plan on going along with notes and photos. I don't want a biopsy or tests ... just a plan of action going forward. Nutritionist maybe? I have a feeling that I will get a lot of help here. Sorry this post is so long ... it's been a long journey!    Best I could do for a photo is this link. It shows a small area of my body that is affected:    
  20. My son was born in June of last year and he seemed normal at birth. After the second month we had a terrible bout of thrush that was treated with antibiotics and antifungals for both of us. After the treatment my son started having stomach distension, horrible foul smelling mucus stools and diarrhea  screaming fits, heartburn and red spots on his skin. This continued to worsen until he was awake around the clock with screaming, having to be held upright, swelling so large his stomach wouldn't fit in pants, and constant mucousy stools that were so foul my husband and I threw up once changing him. His skin went from small red spots to larger boil like lesions that he constantly itched at. He also was getting covered in cradle cap. We took him to the doctor almost every week and they said it was colic/reflux/or possible FPIES. We continued an elimination diet (breastfeeding) until we removed all dairy, soy and soy derivatives  and gluten. The gluten removal made a HUGE change. After 6 weeks he stopped having mucosy stool and stomach swelling was gone 1 week after gluten removal.    His skin continued to be a huge problem and almost all of his upper body was covered in large boil like itchy lesions. He would get them on his neck, arms, genetails, face, arm joints, leg joints and buttocks. At this point we saw a Dermatologist who diagnosed him with DH. She was certain that was the problem. (As we had suspected). Since we had been gluten free, she suggested we go Corn free. That made a HUGE difference. Even the small amount of corn in mustard would make him sick. After that we still had some outbreaks but found some people on this site removing iodized salt to stop DH. We tried that and within 48 hours his skin was almost completely clear.    So after this long introduction, the question is what steps to do to be officially diagnosed with Celiac? Our regular doc can't do it because we removed gluten before the blood test so he needs a positive test to Dx. We were sent to UNC's Children's Hospital and the head of PedsGI said that "babies can't get Celiac because there is no way to have gluten in breastmilk". He also refuses to accept an infant with DH even though we have 2 other derms confirming it and a positive biopsy. We have been sent to 5 allergists to look for "allergies". Each doc there says it is Celiac and sends us back. How do I get this officially diagnosed and what kind of follow up care should I be asking for?
  21. I was diagnosed with Celiac about 3 months ago. I never had any symptoms, and was only diagnosed because a family member was. As soon as I found out I went gluten free.   Two Saturdays ago (9 days) I had a little to drink, and not thinking about it, ate two burritos on flour tortillas. The next morning, I had a large, red, raised rash on my left inner thigh that was very itchy. After that, small itchy flesh colored bumps have appeared on my left forearm, my lower back, and my genitals. New bumps are starting to appear on my right inner thigh. I am not really sure if it is getting better, but if it is it is taking a long time.   I read up on it, but I'm not sure if this is dermatitis herpetiformis. I am at college away from home, so I can't really go to a doctor, and I know the on campus clinic will not be helpful.   Anyone else experience similar symptoms? What can I do to speed the healing process up? How long will this rash be here?
  22. I am a 39 yo female & I have struggled with "acne" on my back, neck, scalp, face, and lesions on my abdomen, legs too (many of the lesions being symmetrical) since I was 14. Only the past year, in researching gluten did I discover this condition called dermatitis herpetiformis. It has been a horrible thing to have to deal with since all along I thought I had severe acne andI have spent $$$$s on product & MD visits without any relief. At the end of last summer, I decided to give a gluten free diet a try. My skin is nearly healed completely. I am so relieved. While my DH, which is what I believe I had, was more like acne - the pustules would crust and weep and take weeks to heal. I have also experienced swollen itchy eyelids & raised, pink flat rashes on my neck & back of my thighs over the years - which appear more like the DH pics I see on this forum. I am so irritated with all of the doctors I've seen that didn't help me. A while back I even had a derm do a large biopsy from a lesions on my back, but of course he didn't even mention DH. I am pretty adamant about not going back to gluten merely for testing. I think my 14 yo might have it too. She is breaking out just like I did at her age. I see my doctor in Feb and I really want her to give me Dapsone. My daughter doesn't want to be tested. So- since my skin cleared on a gluten free diet, do you think this is DH? Or am I just allergic? Any thoughts or suggestions on my story is appreciated. Thanks.
  23. New to the forum, I greatly appreciate the current posts and everyone's help with mine! I will try to be brief, but I think some explanation is needed. HOWEVER, I will ask the question first: Will my DH benefit or worsen from using clindamycin phosphate topical gel? I was prescribed this by my dermatologist (who claims I have perioral dermatitis... a label for “we don’t know” in my opinion) to use for 1.5 months. Backstory: After recently seeing a naturalist/herbalist, I believe I have a gluten, and possibly dairy, allergy. After much frustration from doctors diagnosing me with adult acne (I’m a 25 year old female who has never had more than a monthly breakout) and perioral dermatitis, I believe that my past severe anemia, poor health, and worsening face rash that started after eating raw vegan (detoxing) for a month has a logical, definite cause: GLUTEN. For 4 months now, the DH that started on both sides of my chin and mouth has spread to my nose, in between my eyebrows and forehead and has gotten worse. I have treated it with cortisone and a prescription cortisone, but the rash comes back worse after use. I have been eating gluten and dairy free and supplementing with herbs and vitamins for only a week (although with traveling and eating out, I don’t think my diet has been without wheat contamination), and I am aware that this treatment takes time.... but I am at my whits end. Makeup seems to make it worse, but I am too insecure to leave the house without makeup on... which barely conceals the rash when it is at its worse anyway. Call me shallow, but I’m starting to get depressed and extremely stressed out... which I’m sure makes it even worse! Vicious cycle, much!? I wasn’t going to use this antibiotic topical lotion, however, I don’t know what else to do and I am trying to stay away from prolonging use of the cortisone. Has anyone had experience with this lotion? Is there another topical lotion I could get prescribed? Thank you!