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  1. Hi everyone I am new here and still trying to get a diagnosis for the hideous rash that I have been living with for over a year but I have started to go gluten free while I wait and I am just wondering how long it takes for the rash to clear up once strictly gluten-free? It’s only been one week and so far I cannot tell any difference But I’m thinking maybe that’s too soon to know anything? Would love any and all input from you lovely people!
  2. I was diagnosed with Severe Celiacs last November plus 2 forms of glaucoma and recently degenerative arthritis. I'm only 22 and finding all this out is exhausting and stressful, well recently I decided to take a break from the gluten free diet and ordered a stuffed crust pizza from pizza hut, a few things from taco bell and a buffet at golden corral! And I have not gotten sick! Maybe I rash but the rash was there before hand, now I'm concerned my doctor was wrong and misdiagnosed me somehow? Before I started the gluten diet I was severely sick, throwing up and couldn't eat, I thought I had cancer, can someone help idk who else to go to, is this normal? Getting sick and then not getting sick? Oh and the rash has been there for weeks doctor has no idea what it is gonna see specialist, auto immune diseases are in family, I did have pelvic inflammatory disease could that of caused something?
  3. I was diagnosed w/ celiacs a year and a half ago. I have so many symptoms possibly related to other autoimmune diseases and other possible medical issues. That it has been so hard for me to recognize that they are most likely related to my celiac's disease. 10 months ago I started having skin issues. First it was dry itchy skin. Figured related to my thyroid. They I started breaking out on my face. I thought "I have acne for the first time in my life?". They a small skin lession under my breast. I it was a burn scar from hot oil. 7 months ago my skin issues on my face started spreading and getting worse. My PCP diagnosed me with eczema. Treated me with hydrocortison. 4 months ago my skin issues got worse. Darkening of skin areas affected. Dry flaking skin. Very sore and itchy. 2 months ago my PCP gave me triamcinolone to treat eczema. Within 2 days my skin issues were gone. Only this cream is very strong and you can not use it for more than 7 days, or it will thin your skin. I stopped it after 7 days, and within 24 hours my rash that looked like acne started coming back. The next day I noticed my neck was hot and itchy. Looked it the mirror, and it was red and swollen. Looked like hives. Took a benedryl, and it went away. Yesterday, my PCP told me Dermatitis Herpetiformis, or Duhring's Disease might be causing this. This is caused by an abnormal immune system response to gluten. Diagnosed by having a skin biopsy. Treated with Dapsone, an antibiotic, and gluten free diet. My symptoms are not exactly as I have read about, and pictures my doctor showed me are a little different. Also, I have been using coconut oil to treat dry itchy skin. If allergic to it, it can cause contact dermatitis. I guess this is also a possibility. Has anyone else had Dematitis Herpetiformis? If so, what were your symptoms? What helped? Did you have a biopsy? How long did it take to go away? Did it come back?
  4. Can gluten-exposure cause elevated liver enzymes during DH rash outbreak?
  5. I’m 30 and have not been tested for any gluten sensitivities, intolerance, or celiac disease. Best as I can recall, two years ago during my first and only pregnancy to date, I began to notice a rash that would appear on my elbows, inner thighs, and knee caps. The rash comes and goes, varying in severity. Until recently, I’ve dismissed the rash, assuming it was/is hormonal or due to weather, or dry skin. I hadn’t even thought to mention it to my doctor. This time around, the rash has been present, but not very prominent until this past week. It has flared up again and is itching and burning more often than not. In addition, I’ve been experiencing abdominal muscle twitching that feels extremely similar to fetal movements. I took two pregnancy tests that came back negative. I honestly would have sworn, despite having no other symptoms and taking birth control, that I was feeling fetal movement. I’ve recently begun researching possible causes for both the rash and muscle spasms, and of course there are so many possibilities, but it seems like the locations of the rash coincide with dermatitis herpetiformis. The above symptoms are the only ones I’m currently experiencing as far as I can tell. I should probably also mention that my diet has been absolute trash until recently, as I’ve committed to trying to get back in shape and maintain a healthier life style. I don’t even know where to begin as far as making appointments, and with which specialists and so on. If anyone has similar experiences and/or any helpful advice or recommendations, I would greatly appreciate the help. Thanks. *EDITED TO ADD- I forgot to mention two other possible symptoms. Depression and anxiety. I struggle with both. I also realize that it’s possible that I’m overreacting and jumping to conclusions. Apologies in advance. I’m beyond frustrated with this stupid rash and the muscle spasms.
  6. ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions??
  7. I was getting SERIOUS hand rashes that were insanely itchy at work!! and I wash my hands ALL the time because I work at a school. I finally asked the secretary, who also has Celiac and she buys all the soap. She admitted it did the same to her and she no longer uses that soap because she researched it and the super flexible cheap plastic containers contain GLUTEN! In Plastic?! Now I've heard it all!!! Has anyone heard of this? is this bogus? Do I seriously need to go to my boss and ask her to buy different soap? There are 3 celiacs at our school but one of them never use that bathroom, they are in a seperate office.
  8. I am new here and looking for help and answers. Thanks in advance for any help you can give. Despite frequent testing I've not been diagnosed with celiac yet but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a child, when I had extensive gastric issues, followed by chronic fatigue , a rash and depression as a teenager. I am 41 now and have a number of illnesses, most of them autoimmune: Hashimoto's hypothyroidism Psoriasis Likely autoimmune atrophic gastritis (under investigation) Pernicious anaemia (low B12) Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs Migraine (three a week) Chronic fatigue syndrome Hypertension Fatty liver Metabolic syndrome Familial hypercholesterolemia Obesity Investigated for celiac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward. I have many other symptoms as yet unattributed: Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes Circular rash on chest Flaky rash on scalp Poor balance Poor positional awareness Clumsiness Weakness and muscle loss Foggy thinking Very poor memory Confusion (sometimes debilitating) Occasional panting / shortness of breath Anxiety and paranoia Persecution complex Restless legs Tachycardia and palpitations Sleep disturbances Debilitating intermittent ankle pain Aches in every joint and muscle Muscle stiffness Mouth ulcers Dry eyes Cold extremities Poor circulation Pins and needles Pain in calf muscles when walking more than 200 yards Total hair loss on lower legs Constipation / diarrhoea Blood in stools Pale complexion Moon face While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything. The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy. In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free. I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar. I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.
  9. Pinkdaisygirl

    Confused and frustrated

    Hi all! I've been reading stuff on this forum for about three years now and I have to say thank you! This is an amazing site and has answered so many questions. I was diagnosed by a chiropractic physician a few years ago with celiac disease so I have no official celiac doctor and am extremely frustrated. I have read a few other posts about this too. I seem to be getting more and more sensitive as the days go on. I have celiac disease and also dairy allergy and seem to be allergic to tapioca and Shea as well. But I'm not sure what else. This year I have developed a rash that appears to be dh? It's itchy but when i scratch or even touch it it feels like it's on fire! But it acts and looks different depending on where it is on my body. Started in the middle of my chest - yep super uncomfortable and then spread to my upper back. Both of those areas cleared up but it had also spread up the back of my neck and even into my hairline somewhat. Seems like every time it starts to go away then it suddenly gets worse. I have changed my shamooo, my conditioner, my soap I use in the shower, no more hair products everything. I'm so frustrated. I can't figure out what it may be that makes it not want to go away. I use wintergreen rubbing alcohol on it a lot bc that seems to help it dry up faster. Also I do use essential oils a lot instead of medicine. They are pure and natural oils and shouldn't contain any gluten as nothing is added to these particular oils. I'm wondering if maybe the oils are irritating it? Or is there anything else that you all may know of that could be keeping this rash active? I use All Free and Clear laundry soap, I switched to Naturelle brand shampoo - no conditioner right now (very dry frizzy hair ATM) no hair products. I was using plain glycerine soap - yuck! And am going to try kirk's Castile soap tonight. Any suggestions would be greatly appreciated. Anything to help the rash go away, stay away, feel even a tiny bit better, anything. Thanks.
  10. Hi All, I just joined here hoping to get some answers and/or pointers in the right direction. My youngest daughter, late twenties is confirmed Celiac. My Oldest has pretty severe Gluten Sensitivity, she's also late twenties. My youngest gets severe stomach issues with the slightest exposure to gluten including cross contamination. My Oldest also has stomach issues but has had a rash that took a year of extreme avoidance of anything Gluten to clear up. I had a rash the looks like photos I've seen of DH and my oldest said it looked like the famous "Gluten Rash". I had a biopsy done, results did not indicate DH. The Dr just indicated a non-specific type of Allergic reaction. Two things. 1) In my mind, regardless of if the rash is DH, it would seem to me that given that Gluten Sensitivity and Celiac can cause all sorts of health problems, it seems reasonable to me that my Rash could still be a result caused by gluten sensitivity even if not specifically DH. I don't have any stomach issues or other symptoms of Celiac or Gluten Sensitivity that I'm aware of. And to be honest, when I eat products that are certified Gluten Free to replace similar foods that would normal be wheat based, I get gassy and/or bloated at times. Any comments on this? 2) I'm about ready to go out of my mind with this Rash. I'm still learning, following advice of my celiac daughter to completely eliminate Gluten from my diet. The rash started to clear up and then returned and appearing in new areas. I have been avoiding Gluten as best I can for months. I'm also trying to avoid any personal care, laundry soaps, etc. that would contain Gluten. When I go out to eat (which I've started to do much less), I try to avoid gluten as best I can. I suppose I could be getting some cross contamination. As far as getting this rash under control and getting some relief, I'd read that Dapsone has been used to get DH under control for server cases, but that it takes a long course as well as continuing to remain gluten free. My Dr says that Dapsone is a very harsh Antibiotic and has lots of side effects and does not recommend it. I'm going to be visiting my doctor again to see what can be done about the rash. I intend to stay gluten free, but I've got to find something that will help and also explore the possibility that the rash is not necessarily related to gluten. I've tried several different types of lotions on it and get anywhere from no effect to the rash gets worse. Afraid to put anything on it at this point but the skin gets dry and itchy. As far as tests, I'm not going to go through hassle and expense of getting tested for Celiac or Gluten Sensitivity since the only treatment for that really is to get off the gluten which I'm already doing. So to get to the bottom line here, does anyone have recommendations of lotions or other treatments for the "Gluten Rash" (assuming it's what I even have) that if nothing else can help ease the itching and hopefully shrink it up and/or stop the spreading? And yes, I know that some lotions have gluten in them so I'm avoiding those too. Help!
  11. Has anyone else experienced problems with CSVV (Cutaneous Small Vessel Vasculitis - commonly known as Hiker's Rash) and Celiac? I am celiac (confirmed by EGD), strictly gluten-free and also recently diagnosed with CSVV which I understand is also an auto-immune issue. The CSVV has been getting progressively worse this summer and I can't find much info about it. Anyone else have this odd lower leg vasculitis that is often triggered by exercise (here's an image from the internet of typical presentation)? Have you found anything that helps? Thanks for any feedback !
  12. Hi, I have been getting strange rashes on my body for a couple of years now. I'm 25, if that matters at all. They are sometimes worse than other times, and they seem to be happening more frequently. They seem to flare up every couple of months or so, but I always have random tiny itchy spots that pop up randomly in between these flare ups, They are insanely itchy, and then usually form papillae and then almost burn. They are usually symmetrical, but one side is usually worse than the other. I don't usually get it on the outsides of my elbows and knees .. It's actually usually on the inside of my elbows and backs of my knees. I don't have terrible stomach issues, but I still am not perfect in that area... I, in general, usually feel terrible.. In most of aspects of my health. I have thyroid disease, and am treated for it. I have bipolar disorder and extreme anxiety lately... Here are some pictures of the rash that broke out this time. They usually start small and just get bigger and bigger over a couple of days. I just have been having so many health issues lately, these rashes being one big part of it. I was so excited to get to the doctor and finally figure out was wrong with me at my one year check up, and after testing for lupus and RA and a normal full panel... Nothing came up. I am desperate. I have a six month old son and I can barely keep up now.. Let alone when he is a toddler! http://tinypic.com/r/m2an4/9 http://tinypic.com/r/1xx6jt/9
  13. Hello everyone. I had my DH skin biopsies today and the medical assistant said it would take 5 weeks to get the result back. That seems excessive- has this been everyone else's experience as well? Thanks for your help!
  14. About a year ago I had been having a lot of digestive issues off and on for several weeks. I was tested for Celiac by blood test. I had gone off gluten for a while, but when I found out I had to be eating gluten before testing, I went back on. I was only on for about 1-2 weeks before they did the blood work. Here are my test results: No serological evidence of celiac disease. TISSUE TRANSGLUTAMINASE AB, IGA Result: 1 Reference Range: <4 U/mL IMMUNOGLOBULIN A Result: 158 Reference Range: 81-463 mg/dL Then I had an endoscopy due to mucus issues I was having, but the doctor didn't biopsy for Celiac while he was in there. I took myself off gluten and red meat last fall. I'm not sure which one helped, but I quit having the stomach pain. So a few days ago I attended a wedding and decided to eat regular food at the reception. I had both red meat and gluten (2 dinner rolls and small piece of cake). The next day I had the old stomach pain. Then the day after that I developed a stye on one eye and a small rash (no blisters, just bumps) on the other side of my face. Since I indulged in both red meat and gluten, I have no way to be sure which one caused me a problem. I periodically get a blistery break out on my right hand and have had it break out on my forearm. But it is never widespread and is always in the same area. I get an occasional bout of a bump or two on my face which is not a blister but does tend to ooze a little liquid sometimes. I also get itchy underarms with little bumps but no blisters. When I was a kid, I used to break out with a red rash behind my knees, which I was told was an allergy, but never was told to what. What I would like to know is if any of this sounds like gluten intolerance? I'm not sure that I would consider myself Celiac and I'm not wanting to go back on gluten to be tested. Would it be worth the money to do the DQ2 and DQ8 testing? Thanks. Kathy
  15. Well, I'm new to the forum- and thankful to have found it! I wanted to be able to share my story with someone who would understand, as my family of origin doesn't really understand or "get it." (I do have a supportive husband, but he doesn't really understand it fully, either.) Well, where to start? I've just finished a rough 14 days of constant diarrhea when I ate anything. I'm talking about ever 15 minutes I was in the bathroom- around the clock- for the first 9 days, and then finally it subsided a bit and while I was still dealing with the bathroom issues, they weren't as frequent. At the same time a lovely rash showed up and I had horrible bloating and cramping. It was miserable. I finally figured out that I had been glutened; I don't know how or where as we keep our entire home gluten free, but it had happened. It was awful. I wouldn't wish it on anyone. Thinking about it, my stomach is gurgling and churning. Yuck. It happened right after a really high stress situation - some acute stress, and some a bit more prolonged, but it all coincided. During this most recent episode, I went to our chiropractor for an adjustment, allergy testing, and some supplements to get me through the horrible ordeal. (I am a natural healing practitioner and utilize these methods first and foremost for myself/my family.) He specializes in nutrition, and I asked him based on the testing if he saw anything unusual or that raised red flags. His response was that I really should never have gluten containing anything again, and that I most likely will need to avoid dairy for a long while while I am healing. I asked him about celiac testing, and his response was that if I wanted to put my body through being on gluten for 12 weeks, I would then be able to go and be tested, but that it likely wasn't worth it based on this most recent exposure. I grabbed my supplements and headed home. I have wrestled with his words for a few days. I have been gluten free for 6 weeks, and on a low-fodmap diet because it was assumed I was dealing with IBS issues. Something about the finality of being gluten free forever was difficult for me to digest. But it made sense. I have had issues with gluten my whole life, but they were either ignored. explained away, or they were not connected to celiac disease by medical professionals, or holistic professionals. My chiropractor (and now I) believes it started when I was a little girl: I had my tonsils removed at age 3 because I got strep at least 8 times a year, I had nasty diaper rashes often- but my mother refused to believe that I was reacting to foods; when I was a teenager I had horrible candida in my intestines and gut, I craved breads and pastas but would either be horrible constipated or have diarrhea; as a young adult I dealt with some pretty intense monthly cycles - they were either awful or non-existant, and my candida continued to rear its ugly head into my college years/into my graduate studies; when I was married and we had our first baby, I started to only eat whole wheat or sprouted wheat- and my blood pressure was sky high, but my doctors continued to tell me that whole grain wheat was good for me and that it was better than not eating wheat. I started to get a rash somewhat regularly on my body, and developed "chicken skin" on my arms from a vitamin deficiency- later that year, I saw a natural healing practitioner who said that my on-going depression and awful mood swings were likely caused by wheat but she didn't want to diagnose me yet, she just wanted me to go gluten free to see how I felt. Well, I was scared and panicked and did it for 2 days before I went back to eating whole wheat. I should have listened to her then! After out first was born, we miscarried 6 babied in 3 years. I was devastated. I thought I was broken, and no one had answers for me- except that maybe it was PCOS or maybe it was because we were following a vegan diet. I started to ponder more about what she had said a few years prior and felt it might be time to go gluten free. So, I went "gluten light"- mostly gluten free but I still made (and ate) whole wheat sourdough bread, sourdough muffins, sourdough cinnamon rolls, etc. for another year or so. I tried eating Einkorn, because I was told that people with gluten issues could tolerate it better than regular wheat. We eventually conceived again and my sweet baby girl was born a year ago. I was gluten free (with very few exceptions) during her pregnancy, and after she was born I ended up having to cut out gluten because I was breastfeeding and she would have horrible reactions whenever I would nurse her and I had eaten wheat. She was diagnosed as failure to thrive while I was still eating gluten and they ran so many tests I felt dizzy doing to every specialist they had us running off to. Her celiac panel came back positive but they wouldn't diagnose her without a biopsy and her ingesting wheat on her own for 3-6 months. I couldn't risk it with her- she was just too tiny and below the bottom 3% for growth. So gluten free is was. And I was really good about it, except for cross contamination after she started thriving again. She had gained enough weight that I thought it was okay to start eating gluten again- and being lax about cross contamination. (I swear, it is like a drug sometimes! But what is harder is that I have fond memories of my mothers homemade bread being made and rising and then eating it warm with honey and butter- and giving up having those memories with my own children was more difficult.) Finally, something clicked 6 weeks ago- well, 8 at this point. I was having constipation and diarrhea off and on, candida flare ups (which happened all along, but have gotten progressively worse with the more gluten I ate), and I was tired of feeling so tired and sick all the time. I hated being "that" mom- the sick one who couldn't ever do anything with her kids or family or friends without being wiped out for days afterward. So, I stopped eating gluten. Our house became a ZERO tolerance for gluten zone, and I started to heal. I felt nourished and not constantly hungry all the time- even after eating a meal. My sinus issues stopped. My tummy troubles stopped. My cycles that I have had were normal... and on and on and on. Then, the gluten-ing happened. (Probably from eating out at a restaurant that wasn't so good about cross contamination.) And my chiropractor meeting happened. And the rash, and all of the other things. Bottom line: I don't have an official diagnosis with a stamp of approval from a licensed physician. But I do have my chiro's assessment, and I have my own body's proof. Oh- and my birth family (I am adopted) gave me my family medical history-- that is another piece to this puzzle. Both my birth parents have bowel issues- constipation, diarrhea, bloating (she has been asked when she is due with her baby almost monthly for as long as I have known her-- for 20 years). I've been gluten free for 8 weeks now, and finally feel like I have my life back again- minus the little cross contamination crisis 2 weeks ago. So two questions- is going back to gluten worth the official diagnosis for you? and How do you handle family members who think that this is just a fad and all in your head/made up? My family thinks that this is all crazy and that there is no possible way this could come on so suddenly. It's a bit toxic to be around them sometimes because of the side comments that are made, or being reminded how awful gluten free food tastes/how terrible the texture is from them, or being told that something can't really be bread (or cake or pie, etc.) because it isn't made with wheat flour. I would love to hear you share your stories and thoughts, if you are willing to share.
  16. I really need some help clearing up a host of mystery symptoms I've had since July of this year.. One night I went to sleep and had a sudden onset of heart palpitations. I thought they would be gone by morning but little did I know I would still have them months later. I went to the dr. twice & received two blood tests (not celiac panels either time) - nothing. I have no other symptoms related to this other than the palps - no pain, weakness etc. I don't do drugs either and only drink occasionally and socially. They have been gradually disappearing since then but it has seriously taken months upon months. My dr told me its related to anxiety. They were the absolute scariest experience of my life and I would rather walk through hell barefoot than experience it again. Besides this I've had recurrent, severe mouth ulcers for years and my dr. did diagnose me with Herpes Simplex Virus 1 but I feel they come when I'm really stressed and know there is another reason why I'm suddenly getting them more and more often. A few days ago I developed a severe skin rash on my legs that is unbearably itchy and blistery. It got worse and now is stable but not going away. It is so bad that I haven't even been able to shave in about 2 weeks. I kid you not. For the last symptom... I used to get bad heart burn/indigestion/upper abdominal pain after eating foods such as salsas, pickles, peppers etc. Now it seems to be happening more often... First it was after pizza and now this AM I had a bagel and felt discomfort all day - burning abdominal/diaphragm, bloating, grumbling etc.. Seriously?? WTF is this? Who experiences pain from a bagel?! I just don't know what to do but want to know if this at all sounds celiac related.. Symptoms read: Heart Palpitations Mouth Ulcers Skin Rash Abdominal discomfort after eating Please help
  17. ThisGalsGlutenFree

    Diagnosing Dh Rash

    I have what may be a DH rash, but I began a gluten-free diet before my doctor recommended having a biopsy to confirm the diagnosis. My doctor’s recommendation for a biopsy was based on, in her words, a ‘low-positive’ tTG IgG result (My IgA result was negative, but total IgA was not tested). The rash has been so terrible and disruptive that I couldn't bear the thought of completing a gluten challenge to be diagnosed, so I thought I would rather wait and see if the gluten-free diet affects the rash over the next several months. I’ve been eating gluten-free for six weeks now. After a month on the diet, I felt like the rash was receding: it was flattening out, not as itchy, and it was no longer affecting my ability to function in the daytime or sleep at night. About three days ago, I noticed increased itchiness and some of the previously receding rash patches have become inflamed again. I’ve also noticed new hives and intense itching on other patches of skin where no hives have popped up yet. The rash seems to be relapsing and spreading to new areas. These are my questions: -I’ve seen from other posts that a DH biopsy can be falsely negative if a person is no longer eating gluten. But if I have active rash, how can there not be IgA deposits in my skin that a biopsy would detect? -If I am ‘relapsing’, or the rash is spreading, is it a definite indicator that I have accidentally gotten gluten in my diet? In other words, does DH ever spontaneously relapse on a clean diet? If it only relapses and spreads when there’s gluten in the body, does that mean I haven't been perfect on the diet as I supposed I was, and could probably have a diagnosis through biopsy? I’ve read that DH can be difficult to diagnose, and other skin issues can look like DH rash. I am still chasing a definitive diagnosis because I’m concerned that if the rash I have isn’t DH, I may be letting a different medical problem go undiagnosed and untreated. Thanks for reading this. I appreciate any thoughts you can offer.
  18. Hi All, This question is regarding my 2 year old niece who has been breaking out in hives as of late. I am a celiac without DH symptoms, my sister is likely a celiac but undiagnosed (gluten free), my niece's paternal grandmother and great grandmother are also celiac. So the kid is in the middle of a genetic minefield. Apparently, she has been breaking out mostly at night and wakes up in the morning with hives/rash all over her belly, back, and sometimes her arms and legs depending on how bad it is. The rash disappears pretty quickly. The first time they took her into the pediatrician and it was no longer there at that point. This morning, it disappeared as they were eating breakfast. She is left with a few random hives throughout the day, but not the all over rash. She does eat gluten, especially at school and she had a roll last night at dinner. This could be so many things, but I know very little about DH. Does it come and go that quickly or does it stick around for long periods of time??? She does have some GI symptoms (Constipation) which is leading me to ask this question.. Thanks for your help! Shellie
  19. Hi, I was recently tested for celiac markers and here are my results: TISSUE TRANSGLUTAMINASE IgG <=0.90 Index 0.13 Tissue transglutaminase IgA <=0.90 Index 1.17 Would this mean I have celiacs? Also, I have broke out in hives all over my body and they burn. They don't itch, they just burn and they have said it's Urticaria and it's autoimmune related even though all my auto immune tests came back negative, except this IgA test. Please help.
  20. Hi there, I am posting on behalf of my husband. I have some questions and need some help from you guys, please & Thank you!! I want to be detailed, but I also don't want to go on and on and on. Husband was basically born with Ulcerative Colitis, when he was in his late 20's they decided to remove his colon and give him an intestinal pouch (weird, right? called a J-Pouch). He had a endoscope done a couple years after the surgery and they found that his Villi were flat. They told him to eat Gluten-Free for 3 months to see if his villi would rise again, and if they did rise, the doctor said that would mean that Gluten caused the flatness, therefore my husband would have Celiac's... He ate gluten free (he was completely miserable) and he went back for the check up and they found that his villi were still flat. Because of this, they said he had Celiacs. My husband, being stubborn, decided that he wasn't going to eat gluten-free anymore. Just being stubborn, he told himself that this Celiac's thing isn't real and doesn't exist, though, I think he was just joking... Anyways, my husband never had Any stomach issues or any problems what-so-ever to make him think he had Celiacs, besides the flat villi. Do to having an internal pouch (basically, his small intestine is now his colon....) he does go to the bathroom a lot and it's usually loose stools (TMI?) but all of this is expected from his J-Pouch, he never had stomach cramping or any other Celiac's symptoms... So he kept eating gluten, and we began to forget he was even "diagnosed" as having Celiac's. Okay - fast forward like 8 years - It's now June 2014, and in february 2014 my husband pointed out that he has a rash on his buttocks that's extremely itchy. We thought, well, that's gross, but let's see if it goes away. Then a couple days later, he has bumps and a rash across his eye lids. We thought, well maybe he caught something weird, so we decided to go to the doctor. The skin doctor tells him that he has a fungal infection on his rear end, and maybe a bacterial infection in his eye, and takes a skin culture. That comes back negative for bacteria. So, my husband takes some medicated lotions and pills and we wait it out. Though, we are never satisfied with thinking that it's a fungal rash. We go back for check ups and now the doctor says it's Eczema and gives us more medication. Weeks pass, and the rash is changing and spreading and finally, it almost 100% clears up. I start googling pictures and I come across DH (the gluten rash) and we think it looks a like! Then we are reminded that my husband was once thought to have Celiacs! Maybe we found out what this is after all! We have a final check up with the doctor and my husband asks him if this rash could be related to Celiacs, and the dermatologist laughs and says no, it's not. It's Ezcema! See! the medicine I gave you made you better therefore if it was DH, it wouldn't have cleared up. We don't know what to believe. So at the beginning of April, when we thought the rash was all gone, we see it on his eyes again, and then his neck!, and his buttocks again, the back of his knees, his ear, his neck, his elbows, EVERYWHERE. It even spread to his cheeks and his scalp. My poor baby. I basically made him start to eat gluten-free because we couldn't afford more doctor appointments. He's been gluten-free for about 3-4 weeks now and the rash is still itchy and still not going away! We scheduled another appointment with a different Derm hoping they'll test his for DH. my question is... Should he start eating Gluten again before this Dr appointment next week? How soon does he need to eat it again? Also - does having flat villi be a symptom for something other than Celiac's? Could he be misdiagnosed for Celiacs if we find out this rash isn't gluten related? His attitude has been so deflated over these past few months, and I just want him to get better. and he wants to eat Gluten so badly. I'm just tired of these doctor visits when they aren't listening to our experiences with his stomach and skin problems. Any help?advice? anyone go through this?
  21. A bit of background, very short version: (I have made other posts with the looong version) My DS (age 6) had what I thought was DH on his bum/hips/lower back. Derm said it wasn't active and come back in 6 weeks to look for changes and potentially do a biopsy. We kept feeding him gluten hoping for a flare, but low and behold it cleared up on its own almost completely. This left me stumped, frustrated, happy for his relief but confused. squirming itch, you said if it's DH it will undoubtedly return, and possibly with a vengance. So here we are: https://flic.kr/p/npNShL This is way worse than his original rash which just looked like mosquito bites. This is raised and lumpy and awful. When I laid eyes on it I felt like I had been kicked in the stomach. Then I convinced myself it was poison ivy. Until this morning when the backs of his ears were inflamed and itchy. Then I noticed a few spots on the back of one knee. Does this look like DH to you? Our 6 week follow up to the dermatologist is next week. I just called and the doctor's awesome office manager is trying to get us in on Friday.
  22. I feel hopeless and overwhelmed I’m a 29-year-old mom and newlywed undergoing testing for Celiac/NCGS, and I’m fairly certain that my dear husband is tired of hearing about it all the time…. So here I am. We’ve been together for three years, and I have to tell my husband that I swear that there was a time in my life where I was “normal.” I’m always achy, have crazy GI issues (not great for our sex life), my skin does insane things, and I alternate between raging irritability, anxiety, and depression. Basically, I’m not much fun to be around. We can’t eat out with friends. I don’t do fun things with my daughter. My life revolves around food and my stupid body. I just want to crawl in a hole and stay there. I started my gluten trial 11 months ago after realizing that the host of symptoms that I was experiencing weren’t normal and could potentially be diet-related. I mentioned the idea of cutting out gluten to some nurse (who, in hindsight, didn’t know jack!) and she told me to go ahead, “cut it out for four weeks and then reintroduce it and see what happens.” Then I could “‘call back’ and they’d enter a gluten allergy into my file.” Yes, she seriously said that. And in my naiveté I followed her advice—little did I know that any attempt at an actual diagnosis would be thwarted from there on out. Anyways, I was diagnosed with Salmonella after eating a bag of recalled lettuce in 2010. But other than that, I’ve always had an iron stomach. Nothing fazed me. But over the past four years my health has gradually deteriorated--and this has been so gradual a process that I can’t even pinpoint any onset, and I never even realized that what was happening to me wasn’t normal. [in case you’re curious, here’s a list of some of my symptoms: Neurological—anxiety (dx); depression (dx); irritability; brain fog; and memory problems. General—chronic rhinitis (dx); chronic sinus infections (dx); headaches; joint pain; weak dental enamel; fatigue; chronic dehydration; UTIs; dysmenorrhea (abnormal periods); night sweats; and water retention. GI—nausea; insatiable appetite; chronic diarrhea (dx); hemorrhoids (dx); painful gas; abdominal pain; and bloating. Skin—keratosis pilaris (dx); geographic tongue (dx); dark circles; adult onset cystic acne (dx); dry skin; eczema; and strange petechiae like rashes that look like I’m bleeding under my skin on my legs.] I do yoga. I’m a runner. I eat organic. I don’t eat processed food. I haven’t had fast food in over a decade (literally). I’m 5’6”, and depending on my water retention, range from either 112-120lbs. I’ve always considered myself a healthy individual. But over the past few years that notion has been destroyed. It finally took my husband, my daughter, and my family calling me out on my “antisocialness” to realize that something was wrong. I would seriously rather lie on my bed or sofa in my sweatpants than go anywhere, do anything, or see anyone. My stomach pain interfered with my quality of life that much! It was like there was a war going on inside. And my previously clear skin looked like a 16-year-olds! It was humiliating. I tried everything for that—clarisonic, topical antibiotics, prescription retinoids, creams, washes, masks, birth control—all to no avail. Over time, I guess I just assumed that multiple loose bowel movements a day was normal; that the stomach gurgling, gas, pain, and bloating were just unfortunate; and that the acne was just hormonal [P.S. That went away as soon as I cut out dairy. Quel surprise!] At that point I was desperate. I did a bunch of research online, and I decided I’d try cutting out gluten like the nurse suggested. And it helped! And when I cut out dairy a few months later it was like heaven on earth! All of my symptoms either went away or started to go away. And when I reintroduced either of them, all of my symptoms came back; so I knew something was up. I’ve since learned that I can’t tolerate dairy or gluten (all grains except for rice, and especially not corn). And it’s been do-able. Not fun, but do-able. [i used to consider myself a “foodie,” but not so much anymore]. The problem is, my husband and I are pushing 30 and we want to try to have another kid soon. Since I’m nervous about having such a restrictive diet, potential allergies, or a serious disease, as well as the impact that my health could have on a child, I talked to my PCP about it and she suggested that I see an allergist and a Gastroenterologist. So I did one more reintroduction test (wheat only) just to make sure, and lo and behold, my body freaked out! Except this time I got a crazy rash that I’d never had before (which four doctors haven’t been able to visually identify). That was in February. In March I did a second reintroduction test (again wheat only). The dumb rash came back. So I went to an allergist. She did a full food allergy blood panel on me and they all came back negative. She also did a Celiac panel on me and that came back negative too (though it’s no surprise since I had only eaten one serving of gluten/day for four days, and had been gluten-free for nine months prior). My PCP told me the blood work means nothing because of that. Anyways, a little over a week ago I got sick again, only this time, it was on accident. And the dumb rash came back, except it's spread more this time. My stomach is freaking out, I’ve had diarrhea for ten days, blood in my stool for three, and am passing undigested food. Basically anything I eat goes right through me. I’m starving, dehydrated, and look and feel like death. I saw my PCP and she said I need to go in for a colonoscopy and probably an endoscopy. I’m scared, frustrated, tired, and feel sort of crazy. I’m so tired of feeling like this! I don’t know what I’ll do when the GI tells me that I’m going to have to start eating gluten again! If I could hide I would. So this is where I’m at now. I truly appreciate those of you who took the time to read this! I just know I need to stop relying on my husband as my sole support because it’s not very healthy, and my family just doesn’t understand. Any words of advice, insight, or comfort would be much appreciated! Shannon Gluten-free since May 2013 DF since Sept 2013 Grain free (excl. rice) since Sept 2013 Allergy testing (negative) Mar 2014
  23. 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 https://www.flickr.com/photos/101624582@N05/13588883273/ https://www.flickr.com/photos/101624582@N05/13588841195/ https://www.flickr.com/photos/101624582@N05/13585386044/ https://www.flickr.com/photos/101624582@N05/13585005635/in/photostream/ https://www.flickr.com/photos/101624582@N05/13585384024/in/photostream/
  24. Hi, everyone. My blood work was negative for Celiac last year, and I also had a biopsy done on my hand (palms) where I have an undiagnosed pustular psoriasis-like rash (and on the soles of my feet) and that was inconclusive for psoriasis AND DH. So I am still no further to finding out these health problems I have. I had an upper endoscopy but I don't think they took biopsies of my stomach or my duodenum. If they did, I never received a call with any results. Anyway, I'm going through a phase again of diarrhea (fluffy, weird cloud-like stools) of yellowish or light brown color most of the time, bloating, nausea and the newest issue is heart burn that is not relieved by Pepcid or Prevacid which is WEIRD for me. I have an old-ish prescription of Phenergan (from last year due to the severe nausea I had) and it's working well for my heartburn and bloating pain. I am starting to journal my food intake and I am noticing that whenever I eat something with obvious gluten I end up with this heart burn and bloating. My stomach was happy and fine when I woke up, I was up for about an hour then had breakfast. Mom made biscuits and eggs and I had an egg sandwich with one biscuit as the bread, and had a slice of American cheese on it. Within a half hour I noticed the bloating and burning way down low in my intestines, then less than 5 minutes after that I felt the heart burn appear. So I took a Phenergan. I'm feeling much better though right now it's not fully kicked in, so I still have a little bloating pain but it seems the heart burn is gone. Now here is some background: Feb 5, 2014 I quit drinking diet soda altogether. I had 3 that day by noon and around 1pm I refused to drink any more soda. I have only had water, orange juice, soy milk and 2 regular Cokes since then. I am drinking water all day with the occasional OJ for breakfast (4-8oz). About a week or so ago I noticed my PMLE (sun allergy) was horrible. It is now affecting my face first and foremost, my EYES, my arms which is typical for me but even indoors Incandescent bulbs are causing the rash on my face, and arms. That is not normal at all for me. I've been waking up with a rash all over my face, it's not super red or anything but it tends to itch. I am not noticing any swelling in my throat or anything like that. I do have rosacea and it's flared up big time on my left cheek, on the apple. Huge red blotch. So I put sunscreen (SPF 50) on my face today not long after I woke up. I have to wear my over-my-glasses sunglasses all day and until I go to sleep due to the brightness of the sun in our house, lightbulbs, TV, laptop screen cause me to have a migraine and my eyes sting and burn. I'm also having eye allergies so I've been using Zaditor which doenst work for the light sensitivity (which also causes stinging and burning) and I switched to Visine A.C. and it works better for now for the regular seasonal eye allergies. But the stinging/burning from light started prior to the eye allergies. So that is where I am at right now. I have to wear sunscreen whenever I go outside or am near a window. And even then the sunscreen doesn't seem to protect my face at all from developing the rash and the rosacea. The sunscreen is finally protecting my arms like it should but for some unknown reason it is not helping my face. So basically I am a hermit in my own home now. I am thinking I might go ahead and do the colonoscopy. But when I had the upper GI scope they didn't sedate me enough and wow it was a horrible experience to say the least. So I will tell the colonoscopy doctor and nurse that I was not sedated enough for the endoscopy I had in August (which was in Ohio, we moved to Nevada since then) so I hope they can seriously sedate me this time. I am lactose intolerant but do not have any issues with sliced cheese or sour cream that I have noticed. I can't eat cottage cheese, frozen yogurt, yogurt, milk, etc. Though I seem to be able to handle milk or cream in amounts I use for coffee every morning without having any issues. I have no known food allergies other than Kiwi and fresh pineapple. That causes burning on my lips and tongue but no systemic reactions as of last time I had those foods. If you can give any advice or anything please feel free to reply. I have a dermatologist appointment tomorrow to address the skin rash. I'm seriously thinking of going gluten-free but I live with my parents and they do not have gluten intolerances. Our kitchen would be full of gluten and skillets, pans, oven, toaster, pantry, etc would all be contaminated all the time. Thank you.
  25. I have very positive genetics for celiac and I have undiagnosed children. Yesterday, my daughter showed me that her rash she gets every winter has appeared on one wrist. The other wrist, she says will break out soon. The rash is all of the way around her wrist in about a 2- 3 inch area. I think it is imperative we have this rash checked out right away to see if it might be DH. Any clues how I can get this rash seen in an urgent timeframe? Can an urgent care center or general practitioner help? Desperately trying to help my children, D