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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 wanted to share what has cleared up my DH rash within a matter of days -- a histamine free diet. (gluten free too of course). You can search online for various diet plans for specific foods to avoid and what to eat. I had been gluten free for over a year, then ate what I thought was custard, only to realize to late it contained cake. That brought on the worst DH I'd ever experienced and nothing offered even the slightest relief. I work in the field of holistic health & wellness and am very much against taking powerful antibiotics. Dapsone, also prescribed for leprosy and HIV patients, didn't make sense to me. I'm a certified Nutritional Therapist, my first thought was the "leaky gut" diet plan, but my rash was still flaring like crazy. (The "leaky gut" foods are nearly all high histamine foods.) Then I started to connect the dots-- rash, histamine response, etc and realized the histamine free diet made sense. Which meant everything I ate that I *thought* was healthy & healing was causing my elevated histamine levels to go even crazier. (I've always eaten clean--my daily diet was about avocados, yogurt, bananas, lentils, cheese, sauerkraut, oranges, tomatoes, etc--- all high histamine-impacting foods!!). When I replaced the histamine containing, histamine releasing and DAO blocking foods, I felt relief within 24 hours. In 48 hours the angry redness had nearly disappeared. On day 3, I must have said 100 times "OMG I'm not itching!!". I had been taking supplements (L-glutamine, quercetin, caprylic acid and PABA) which I know are helping my gut, but the histamine-free diet instantly helped the horrible DH. I wanted to test this and I ate 1/2 a banana (a histamine food) and my skin felt prickly within minutes. I hope this offers someone some relief. If you're doing everything right yet not finding relief, consider the histamine-free diet.
  3. I was diagnosed with celiac disease four years ago (through a biopsy and blood test). I immediately stopped eating gluten and have followed a rigid gluten-free diet ever since (I sometimes eat at restaurants and cafés but am always careful when I do). Around the same time (i.e. four years ago) I started having occasional rashes on my tush. I had previously had rashes on my elbows and knees that were thought to be eczema. The progression usually goes like this: an itchy red bump, followed by a raised yellowish blister (also itchy), spreading to a more diffuse pink splotch, finishing with a dark red scab, and then healing. I have always noticed that this usually occurs symmetrically on my body. Eventually it started appearing on my knuckles and fingers, and occasionally on my back and stomach. About a year ago it started to appear fairly intensely on my scalp. At night the itching (especially on my backside) wakes me up. I went to the GP several times and received a variety of possible diagnoses (rarely with any degree of certainty): eczema, fungus, scabies, herpes. I was swabbed for herpes three times with negative results each time. I was prescribed a variety of creams and topical steroids, none of which really worked, except that the steroid (Eumovate) does reduce the itching. More recently I've been using an essential oil mixture that also seems to help the itching. I occasionally get periods of remission, often when I travel, and most recently when I had the flu and my skin cleared up completely for a week. I'm never able to really identify anything different in my diet during these periods of remission. At one point the herbalist put me on the Gaps diet, which I did for a couple months with limited success. My questions are these: 1) are there other people here who have adopted a strict gluten-free diet but still have DH? 2) my GP told me that even though I have been gluten-free for a long time, a biopsy of my skin would still give good results, because I have active symptoms. Does anyone have experience with this? I'm open to any other advice and information people would like to add. I've been reading this part of the forum and have already learned a lot. Thanks
  4. Hey guys so I have had this rash going on for a few months and my doctor just looked at it and said she didn't know what it was and to just use a steroid cream. The cream only works sometimes and generally just stops itching and the blisters from getting bad but never clears it up. I have questioned gluten sensitivity in the past because every time I eat it I immediately get hiccups. Anyhow my rash is on the sides of my ring and middle finger about 2 inches long. It starts as little clear water pockets under the skin and is incredibly itchy. Then it turns to red scaly and peeling and the blisters become raised. Does this sound like something anyone is experienced? Any suggestions for how to get my dr. To look into it more? I'm just nervous because last visit she charged me 800$ to tell me she didn't know what it was and send my home with a prescription that doesn't even work really. Thanks so much in advance!
  5. hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994). In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood. I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic. I very rarely drink. I went for tests and the doctor was baffled. He said I should lose weight. He said it was likely fatty liver disease. That was 2008. For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight. How could toast give me a stomach ache? Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb. One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs. Later that afternoon, I felt like someone had literally poisoned me. This was now 2011. I decided to not eat or drink anything but almonds and organic cold pressed apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor. I refused to eat gluten to get the test. I decided not to eat gluten and I got better. I then started a job in China. I learned how to say things like "no soy sauce" since it's made from wheat. I got so much better. I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water. After a couple of days, I got that shakiness, suddenly, lying in bed. I was astounded, cause I had only water and oranges. Then I remembered that I had taken two Advil, in the gel cap form. I looked on the Internet, and sure enough, the gel caps contained gluten. Wow. Even that small amount in two gel caps set it off. I was very vigilant. Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns. I couldn't resist. I guess I thought, well, it's been a couple of years gluten free, let's see what happens. I ate one and a half huge bakery hot dog buns on impulse. Big mistake. I got so, so sick. I was sick for 6 weeks with various symptoms. Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc. This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies. I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac. He humoured me and gave me the requisition anyway. It wasn't too late! One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test). If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac. The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease. I got so much better living in China. I occasionally slipped. I then went back to canada for a year. I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms. Finally after 6 months I cut out dairy. I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten. I finally did and the DH cleared up. Then back to China. I would go back to Canada twice a year for the time off from spring and summer holidays. It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip. i went for an xray but it didnt show anything. it really killed me to get that pain in my leg and then in my hip. i would cry out and have to sit down. i started riding my bike to work in china cause it was painful to walk very far. I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America. One day about six months ago I made cookies for my students. I wore gloves and was very careful. Before this, I wouldn't even be in the same room with flour. But nothing happened. Then I tasted a cookie. Nothing happened!! The next day, I ate a whole cookie. Nothing happened!! I began to think there was something to the theory of North America and roundup. I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China. I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring. Very strange. So. I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother. I ate only organic yogurt. Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had. My hip was suddenly shooting pain and I cried out and limped to the couch. My mother asked, what did you eat? I said, nothing! Only organic yogurt! Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while. Then back to China, where I was able to eat normally. No pains, nothing. I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine. Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students. Instant reaction! Spleen pain! I had heard that sugar cane was as bad as flour for being drenched in roundup. Now I was convinced. It was definitely stuff from Canada that was the culprit. Only farm products. Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup. Now I know exactly what I can eat and where. I love the food here, and it's safe. There are exceptions. They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction, I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before. A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness. I react much worse to Canadian chocolate. But there is a huge difference between food here and food there. A very painful difference. Hard to figure out, but I think I have. so here's my theory, roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease. If you stop eating roundup completely, you will heal with a healthy diet. If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm. Now I believe him. I wish I'd been able to piece this together a bit earlier. Since 1994, many diseases have hugely increased. That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and many diseases. sorry for the novel but I just can't keep this all to myself, I'm like the canary in the mine. But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body. Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body. So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps! Stay away from farm products! I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc. I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it. I don't really want to go there, I just know what I know and I'm sharing it. this is just the short version but I've tried to include important info. Anyone else have a similar story in any way?
  6. Okay. Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative. I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today. The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back. I'm just confused right now... shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way. how can the blood tests be negative and the biopsy not? if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy? It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.
  7. To Forum Members, I recently was doing research in PubMed about low stomach acid and came across intriguing old research that details it's presence in/with a Celiac and DH diagnosis. see this link https://www.ncbi.nlm.nih.gov/pubmed/3992169 Here is the abstract in it's entirety. Scand J Gastroenterol. 1985 Mar;20(2):133-40. Gastric morphology and function in dermatitis herpetiformis and in coeliac disease. Gillberg R, Kastrup W, Mobacken H, Stockbrügger R, Ahren C. Abstract "Gastric acid secretory capacity was evaluated in 116 patients with dermatitis herpetiformis by means of the pentagastrin test. Endoscopic gastric mucosal biopsy specimens were obtained from both the body and the antrum in 90 of them. Forty-eight patients (41%) had a maximal acid output less than 10 mmol/h, and 30 of them (26%) were achlorhydric. The frequency of achlorhydria increased with age, and 27 out of 58 patients (47%) more than 50 years old were achlorhydric. Antrum-sparing chronic atrophic gastritis was present in 92% of the achlorhydric patients, and hypergastrinaemia and serum parietal cell antibodies were found in most of them. The prevalence of chronic gastritis of the body and of the antrum increased with age. There was no correlation between atrophic gastritis or achlorhydria and small-intestinal villous atrophy, the results of the D-xylose test, and blood folate and serum zinc determinations. The transferrin saturation index was lower in patients with achlorhydria. The frequency of achlorhydria was significantly higher in patients with dermatitis herpetiformis than in 69 patients with coeliac disease." The question is what does it mean? I see the high association between no stomach acid and DH as causal. (triggering) at 90+ percent a direct association. But the relatively high association of Low Stomach could only be casual (associated with) but not definitely triggering but possibly causing someone with Low/No stomach acid to be diagnosed as Celiac/NCGS patients instead. This research being 30+ years old it can be easily over looked. I have found treating my Low Stomach acid helped my GI problems. If it is an Esophageal pH Test could confirm your stomach acid levels. https://www.verywell.com/acid-reflux-ph-test-1742254 Is this definitive research in your mind that indeed no stomach acid is triggering this immune reaction. I was not expecting to find previous research that studied this topic. More Recent research on PPIs indicate low stomach caused by the use of PPIs can/could trigger a Celiac diagnosis. see this article about this topic. Does/Is low or even No stomach acid being confused for Celiac disease today? I would love to hear your thoughts? I share this research in the hope that it will rediscovered again and studied again to see if it can replicated in the hopes that treating one's Low/No stomach acid might help others. This does not mean you yourself will have low stomach acid . . but you won't know if you don't test for it. I think with this high association in those who have received a Celiac diagnosis further testing to rule low/no stomach acid is warranted. Share your thoughts, opinion, ideas and feedback. I start this thread to kick start your thinking? And to invite honest inquiry as the role stomach acid plays in GI health. It is (low stomach/no stomach) is known to be linked/occur in chronic gastritis so it seems only logical it would at least be casual in Celiac/NCGS patient. See this link on Chronic Gastritis and the prevalence of Low/No stomach in chronic gastritis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673514/ they estimate quoting "One may estimate that more than half of the world population have this disease in some degree and extent, indicating that even many hundreds of millions of people worldwide may have chronic gastritis in a form or other." What if the 1/3 of the population that might develop NCGS or celiac disease is just another clinical presentation of chronic gastritis? I think it what the research says to me . . triggered by either low or no stomach acid? Your thoughts and comments are encouraged but I found treating my low stomach acid helped my chronic gastritis. 2 Timothy 2:7 Please Consider what this research says and may the Lord lead you on your continued journey. I hope this research jogs your thinking. I know it confirmed mine . . but I am open to being wrong. A man/woman who corrects me is my friend. I hope this newly rediscovered research helps your thinking about how low/no stomach acid could be causing some of your GI problems forum members/friends. We are all trying to find something that works for us and why we participate to share on this forum to help others with the same help knowledge we have gained on our way/journey God being our help. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish), by the comfort wherewith we ourselves are comforted of God.” Posterboy by the grace of God,
  8. Hi all, I've been reading a lot of your posts over the past year or so, and can relate to so many of you! I'm also hoping you might be able to help. What initially brought me here was a wicked rash that started really small on my back and spread to my abdomen. At first, I thought, "Eh, it's just allergies. It is spring, after all." However, as time went on, the rash spread and was so itchy it kept me up at night. After a few months, I couldn't take it anymore and wound up at the dermatologist. Of course, she tested (and treated me for) scabies... which I clearly did not have and she could find no physical evidence of. None of the topical scabies treatments helped, although some of the steroids gave me relief for a while. She took a biopsy that came back inconclusive with a hard "maybe" on the arthropod bites. Jump to a couple of months later and those suckers started coming back with vengeance. After the several hundreds of dollars I'd spent in vain at the dermatologist, I went to an allergist. He tested me via skin prick tests for both environmental allergies, to which I lit up like a freakin' Christmas tree, and food allergies, which I had fewer and less severe reactions to. He then put me on a strict elimination diet where I could not eat a total of 16-some-odd foods, which included barley. I found that barley hides in many gluten products, so I essentially had it eliminated wheat products from my diet. After the 30 days, I slowly started reintroducing foods -- eggs, carrots, celery, etc. Then I drank a beer. Slowly but surely, the rash started coming back. I thought I'd made my big discovery. It's barley! But even mindfully not eating barley (with the exception of a couple of slips because I didn't know that some gluten-free beer still contains barley), the rash has been a constant fixture in my life for a while now. To give a bit more detail, the rash usually shows up on my back/shoulder blades. It's been on my lower back before. It also shows up on my chest and has been on my abdomen before as well. Never shows up on elbows or knees like others describe. The little sons-of-bitches are itchy as hell and will wake me up occasionally, and sometimes I even wake up with blood on the sheets. They almost look like tiny scabbed-over craters after they've been there for a while. Could it be DH despite all the testing and dieting I've done? Should I bother with further testing, or just try a gluten-free diet? I appreciate any insight!!! H
  9. Hello, I've been recently diagnosed with celiac disease, but my affliction is DH. I started getting the rash around February, was diagnosed in May, so I'm lucky it was a quick turn-around, so I've only really been gluten-free for a few weeks. The information I can't seem to find on my own however is what DH looks like when it's heeling? I only ever find pictures of what it looks like when it's flared up, not when it's healing. I'm sure I'm also accidentally gluten-ing myself over the weekends, but I'm just really new to this obviously and adjusting has been a little tough. Thanks for any advice / info you can give me; in a weird way I'm glad that if I was going to get anything, it's something that has a very supportive community and a wide variety of options and foods that i can still eat. Thanks again.
  10. Allthatsall

    Just diagnosed

    Hi Everyone, I was just diagnosed about two weeks ago with DH after a 5 yr battle for a diagnosis. As I am just learning, I am hoping someone can help answer a few questions and clarify a few confusions. - I have always had IBS since I was in my early 20s. But I am reading that everyone that has DH has celiac. Is this true? my Dr. Said there are cases of non celiac DH. - I keep reading about other triggers to avoid besides gluten. What other things should I avoid? - Why did my Dr tell me to stop taking Aleve? I can't find the answer to this on Google. - What are the other symptoms of DH besides the rash and itching? There has to be more and I have had a variety of issues that seem to coincide with my rash flares. Sorry this is so long and thank you in advance.
  11. Lynny

    DH Rash

    Hello, I have been told that I do not have Celiacs by two derms who did blood panels.. which is great.. however this rash i get is most definitely DH. I have studied it on so many sites and its the only one that comes up. I can not figure it being anything else. My question to you guys is can I be sensitive to gluten and get this rash from ingesting it? Not be a true celiac but gluten sensitive?? I have had stomach issues most of my life but nothing crazy, just tons of bloating and gassy symptoms. I do not have any bathroom issues.. just the skin.. Im struggling to try and figure this out before I lose my mind... Thanks!
  12. I was diagnosed with celiac disease two months ago and am trying my hardest to stick to a gluten-free diet. However, last week i went on vacation to the Dominican Republic and developed an itchy red rash on the back of one knee. I'm sure I occasionally glutened myself while I was on my holiday (though I tried my hardest) as it's incredibly difficult to not ingest it with all the buffets and language barriers. I've always been asymptomatic so I'm just wondering if it is dermatitis herpetiformis (it looks exactly like it) even though I've never had it before. Is it possible to develop symptoms when you've always been symptom free?
  13. Hello all At first I apologized for my bad English My story is long since more than two years At first I dealt with high levels of stress I was very nervous and I knew that something bad would happen After two months after a period of immortality to sleep I woke up to feel the desire to itche in the abdomen to find a pumb think or allergies tried to know the cause without finding any contrary to the sensitivity or tablet of the pill continued pill more than 3 days to go and left a slightly darker effect of the skin But a few days later the same pumbs appeared in different areas but were few One under the right armpit and another on the left armpit the pumb is in the left elbow and the other on the right pumb was on the right and left foot too I cried out, and asked my self, What is this thing? My parents told me he was probably hives I went all the pills after almost 6 days and after a long period of more than 6 months when I wash my hands after a short period began to notice very small heights on the finger was not burned at all, unlike the first appeared I thought maybe the hand lotion was the reason, and a week later I went and was no longer there A month ago I noticed a red area I knew every time something strange happened I could not imagine the stuff there was anything The red area was on the finger and remained red for a week and left a slightly darker area A month later I noticed on the back of the pumb on hand that I thought the hair was the reason, but it lasted a week to go too I do not know very much how I can be sure this may be dh or maybe something else Three months went by without any skin or even intestinal problems I live in Syria almost impossible to get a blood test or even a biopsy of the skin Even if there was a ability to get a biopsy I did not get the rash again It looks like a dh I can say with confidence that the pills at first differ greatly from the last time
  14. Hi Everyone, I am looking for any relevant medical studies, and some general support, that may help me sort out contradictory test results and follow up for my daughter. First family history: My husband presented with pediatric DH and was confirmed through skin biopsy at age 11. His younger sister had GI issues forever, but no rashes. She was given the TTG blood test seven times over many years and it was always negative, with normal total IgA levels . She final convinced someone to do an endoscopy anyway, at age 35, and had full-blown biopsy confirmed celiac with severe intestinal damage and a concurrent diagnosis of hashimoto's thyroiditis. So she is in the tiny percentage where TTG test and IGA never worked. DH's father is also now diagnosed as a celiac - after developing psoriasis and diabetes, he finally took the standard blood test at a free celiac awareness event in his 60s (TTG positive-but late in life) and later endoscopic biopsy confirmed celiac disease. His brother and multiple first cousins on husbands side are also being diagnosed as celiac (biopsy) or have adopted a gluten-free diet without diagnosis because of symptoms. (In other words...the genetic link on that side seems to be...stronger? than reported risk rates). BTW, there are also autoimmune disorders on my side (my dad has churgg-strauss, both sisters hashimotos thyroiditis) though no diagnosed gluten issues. So... my eldest daughter is seven. She had the TTG test at three (negative) and six (negative) ordered by her regular pediatrician at our request. She has ??symptoms??. It is HARD to tell with kids, and I am trying to check my own anxiety - I don't want to overreact needlessly. However, I think it is fair to say she exhibits: heightened irritability, sensory issues, strange recurring rashes on legs, face, and buttocks with no identified contact allergens, (husband says they didn't look like his DH, so ?), inconsistent (but frequent) reports of stomach pain, and inconsistent toileting issues. After a spike in these symptoms, to alleviate worry, we went to a GI celiac specialist for testing at a very well respected celiac center. The Doc recommended TTG, total IGA, DGP-IgG, and the genetic test. At age 7 she came back negative for TTG, normal for total IgA levels, and a strong positive on DGP-IgG. The range for her test - 20-30 considered a weak positive, over 30 a positive. Her results were over 100. He said based on this 'remarkable' serology result and the family history, she should have an endoscopy (multiple biopsies). However, he also told us her genetic results were negative, and her genes were incompatible with celiac disease. He followed up by saying that because her tests were contradictory we should do the endoscopy. We never saw the full genetic test results, and I need to figure out how to request them, but I assumed this meant she was negative for HLA DQ2 and DQ8 (I don't know this for sure.) Her endoscopy results were completely clean. No evidence of any damage. He calls them 'grossly unremarkable' in his lab report. He then told us that celiac disease was definitely excluded. I tried to ask about whether or not we should follow up on the high DGP-IgG result (I am concerned about other immune system implications) and he said no, and added that is could have been a false positive or it could be meaningless. IMHO, he was disappointingly snippy about it. (This totally surprised me, because we were at a celiac disease research center, and it annoyed me a bit, because in a phone conversation two weeks early he used that same test result as a strong reason for doing an endoscopy on a seven year old??) He also told me, "you can put her of a gluten-free diet if you want, but I don't recommend it." So...I would like to celebrate because she is NOT a CELIAC (yay?) but from what I understand (and if you know more please correct me !) - if she had that serology, negative biopsies, and no genetic testing they wold have considered her a 'potential celiac' and urged a gluten free diet. So.....she continues to have symptoms (inconsistent pain, rashes, toilet, sensory) that I think are not normal for a kid her age. (Example: urgent and unforeseen need to use toilet / evidence left in her underpants by the time she get there). My questions to the community: *How concerned should I be with that DGP-IgG result? Should I dismiss it as this expert suggested, given the family history? (Would you retest? Follow up with an immunologist? an allergist? Can people point me to med literature that clearly speaks to the accuracy and specificity of this test? I am confused by what I've read.) *Does anyone know of any medical lit that addresses why a kid might have an elevated DGP-IgG level if it isn't celiac disease? (I saw one study that seemed to suggest that in infants this might self resolve, but the same study pointed out that half the infants with elevated DGP-IgG and no measurable TTG results did have biopsy confirmed celiacs....) *Does anyone know of any studies that tracked DGP-IgG levels in DH patients vs other celiacs? *Does anyone know of other specific links between elevated DGP-IgG and other autoimmune disorders? *Are there other genetic markers I should check for, (including for DH instead of celiac), I should look for on her genetic report if I do manage to get a copy of it? (BTW, do you think it is worth it to try to have my husband genetically tested??? No one in his immediate family has done it because they were all diagnosed other ways.) *Are you a person that had biopsy confirmed DH and a negative genetic test? Or endoscopy confirmed celiac with a negative genetic test? (If so please please tell me you exist!) And last but not least, there are two younger sisters at elevated risk because of family history. What tests would you request for them? (I kinda want to chuck the genetic test through a window but I am trying to keep my faith in science and medicine and not be that mom-on-the-internet!) Finally -- I know I can just put her on a gluten-free diet. We are familiar with it and she already eats lots of gluten-free foods because of her dads diagnosis. However, we aren't a gluten-free household (yet) though I suspect we may be moving in that direction. The thing is, I do believe there are good lifetime reasons to have a clear diagnosis if possible. I appreciate any insights and relevant (especially reliable and evidence-based!) feedback or links. Thank you for reading such a long post!
  15. Has anyone who has a DH-like rash been taking Trazodone and/or using essential oils. I had been taking Trazodone for years for sleep (loved it), then I started using essential oils and started getting a DH-like rash. I stopped using essential oils, but the rash continued. The rash started going away after 5 or so months when I stopped Trazodone. The rash has stopped. Maybe it all was a drug eruption (as lesion biopsy suggested). But with a family history of Celiac, and the pics of DH matching what I had, I'm wondering if anyone else had a similar rash from Trazodone. Also wondering if anyone ended up on this site after using essential oils thinking they might have DH, but didn't. Anyone? Thanks!
  16. Wanted to thank you all here at the forum for your messages, in the course of past two years it has been of much help and encouragement for me to read it and to know that I'm not alone in what I have been going through. I'd like to share my story in case somebody would get any benefit from reading it and in case there is anybody who can suggest something... I got first problems in 2009 when my fingertips started cracking all the time - deep cracks, bleeding, painful, etc. a continuous vicious circle. I just lived with it, it was manageable. I saw a few doctors, they said it was dishydrosis and that was it. In 2012 or so I got first eczema on my right hand little finger that then went on to grow and spread steadily during the following years and ended up to cover my entire right hand palm and moved on to my left hand little finger. At the end of 2015 I experienced first major problems that forced me to go on a strict diet (I saw an article in the internet that explained such eczemas by candida overgrowth). I stayed on that candida diet for something like two months and got a complete relief from all symptoms. The symptoms were overall fatigue, skin peeling off on my forehead, further growth of eczema on my hand, terrible itch and pain becuse of the eczema (I remember dropping on the floor in tears because of the agonising pain), and the last drop was hair loss... That diet helped and I now knew that my problem could be managed. I started reading stuff online trying to figure the connection and what was actually wrong with me. I did some lab tests, I did not have candida, I actually did not have any problems, all lab tests came back clear. I spent 2016 staying on diet on and off, balancing between flareups. I gradually started getting bloating episodes that lasted up to a week with certain discomfort breathing, walking, etc. Through experiments I figured that certain products made me feel worse and made the eczema worse. First was gluten. Avoiding gluten really helped. I could eat gluten one-two times but after several times I had a full flare up (no noticeable stomach problems though), so I started cutting down on gluten. Then soya joined the blacklisted gluten. And then came the spring of 2017 that I will never forget. I am attaching three photos to show what my hand was like. I could hardly use my hand, it would swell, burn, itch, pain. I started getting spots of eczema all over the my hand, spreading on to my left hand and it got really out of control spreading too fast. I tried going to doctors again, tried taking their medicines, all to no avail. Returning to diet and finally cutting out lactose removed the agony within two weeks. So, here I am now - intolerant to gluten, soya, nuts, any forms of sugar (including fruits), lactose. On top of that I am vegetarian (well, now a forced vegan). The reason why I am writing here is although I am strict with gluten I still get some (milder) flareups that are caused by even smallest amount of anything that's off the "diet" things. I can get a some flareup by cleaning some dusty drawers, by sleeping on a bed with dusty floor undernearth, by using spice mix that obviously has something wrong mixed in it, well and of course by eating something wrong when I get weak (and stupid).... Just to give you an idea, when I go to a store I cannot buy any snack at all that would be safe for me. All food that I take has to come from my kitchen and my pots... I have stuck to absolute diet for 3 months but within a week after I started adding some food like fruits or nuts to see if I was still intolerant to it, but I again get back to having problems... I have tried getting tested for allergy (nothing), for stomach problems (nothing), ultrasounds (nothing), blood test for clieac (nothing). Doctors here do not know the cause and do not get concerned also (the doctors just say oh if you feel you cannot take certain foods, then don't take them - duh, but when the list of those tihngs is that long?). Stomach biopsy is not done in my country (unless the patient is dying I guess). The only medicine that I take that helps me is an absorbent that is supposed to take out allergens out of the guts and is taken during poisoning (someting similar to activated charcoal). I took antihistamines almost every day in spring 2017 and I ended up always getting too drowsy for one-two days (even from the non-drowsy ones), so I have stopped taking them. The reason why I am writing all this and why I'm happy you have read till the end is that I feel disheartened and it is very hard for me to actually come to terms with this kind of diet especially because all lab tests come out clear and objectively there is no proof that I do have any allergies or intolerances or stomach problems. I'd appreciate to hear you take to it and perhaps some advice...
  17. Hi All, New to the forum - I have had eczema all my life and recently havehad the mother of all flare ups, used some aveeno prduct (contains oats) to try and moisturise but seems to have made it worse. On a researching the tinterweb I came accross this link with potential gluten alergies and DH. This flare up is the itchiest thing I have ever known, worse at night, not sleeping and has pretty much made me super miserable. I am off to see the doctor today, but just wanted to get your thoughts. Although I dont know if this is scabies or DH or just bad eczema, the symptoms seem very similar to those written in other post and its good to know I'm not the only one going through this, What do you guys think - Does this look like DH to you?
  18. Hello, I need some advice. I have had a positive blood test for celiac. My doctor referred me to a GI specialist but my appointment is not until May (I live in Canada, so it is covered by OHIP but the wait times are ridiculous). I started the process of getting tested because of a rash on my elbows, knees, and bum. I have attached pictures of my knees and elbows (excluded my bum). My blood test results are also included. I am very certain that I am celiac. My question is, with the blood work and rash, would you wait until May to have an endoscopy done to confirm diagnosis or go ahead and cut gluten from your diet to alleviate symptoms? My rash is so itchy, it keeps me up at night. I have an 8 month old son who also keeps me up at night. Before I realized Celiac was a possibility, I thought I had brain cancer because of the brain fog/dizziness/memory loss. Once I googled my rash and other symptoms, and had the blood work done, it all makes sense with celiac. What would you do??
  19. I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more. Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
  20. Hi .there. I'm so tired of feelig like absolute poo every day! I'm 21 and I have horrible skin, mucous in my stool, extreme stomach upset and fatigue every day! I get confused, spacey, lightheaded, dizzy, irritable feelings constantly it seems. My whole body always hurts. And my joints. If im not constipated, I have diarrhea. Gas. Bloating. Itchy rashy bumpy skin. Plus I'm always hungry it seems. Please tell me I'm on to figuring wth is wrong with me celiac isnt good it is a horrible diagnosis but I just need some answers. . Can I have your opinions please? Thanks! I dont know if my photos are going to work . Hopefully they do... :-/
  21. Hey all, I am noticing much more stringy / mucus with my poop now that I have gone gluten free (about four days now). I know it can take a while to reverse the effects of gluten, so is this normal? To have more of that mucus than before?
  22. Hello, I have had rashes all my life, positive nickel allergy, but I avoid it. I have had both the patch test and the prick test done by an allergist last summer with everything negative, but nickel, which I knew going in. She suggested gluten, despite the fact that all blood tests were negative for celiac. I know you can be positive DH with neg blood tests and I am so sure its DH. I had a biopsy done last summer, but I was not told beforehand that being gluten free, or treating the rash with medication before the biopsy could cause a false negative, so it is completely possible that I was doing both of those things, I just cannot remember. I want to get another biopsy done but I am not sure I can afford it because I do not know if it is covered under my insurance My rash is, mostly, bilateral. I get it on my forearms, legs, butt, thighs, sometimes breasts, sometimes neck. If I treat it with topical medicine it will go away somewhat/be less itchy, but if I stop medicine for a day or so it will be awful and itchy and painful. Also, when/if the rash goes away I am left with darker areas of hyper pigmentation which I read could be a sign of DH. Does anyone else get that? For some reason I think it might get worse in the summer.... maybe I am just more aware of it because of the fact that I can't show my skin during times that you are supposed to.... I am currently eating a diet containing gluten because gluten free food is so expensive and I want a better confirmation before I spend all that money on gluten free food. I am a vegetarian and a college student, so I do not have a lot of money to be even more picky about food. If anyone has any input on my image, or has an opinion on if you think this is DH I would really appreciate it.
  23. len4ita

    DH...or not?

    Hello everyone! I have been following the forum for some time now but this is the first time I registered and decided to post as I need advice from someone who has experience with DH. I little bit of history...I was diagnosed with Hashimoto's few years ago. I started following gluten free diet which I realized was not very strict at that time meaning I stopped consuming gluten, wheat, etc. but I did not exclude the foods that were marked as 'possibly cross-contaminated with gluten'. I thought that is not so important at that time. Yet I have seen instant relief in my thyroid symptoms and my antibodies flew down every month. I also stopped consuming dairy at that time. Then, after about 10 months I was craving ice cream soooo much that I told 'ok, I will just have it one time'. Bad decision. Needless to say I ended up consuming ice cream and the wheat cone they put it in many times after that and my antibodies increased, too. At that time I noticed strong headaches, lack of attention, and itchy rash that appeared on my face. I started following strict gluten free diet again, the rash started to clear up veeeeery slowly, and few months later I finally decided to visit a gastro to get tested for celiac disease. Another mistake! She told me I need to introduce gluten again to get correct results. So I did it. I had another flare up and the worst headache ever I got in my life. I added gluten to my diet for 2 weeks only but I felt I could not continue this diet so I called off my next appointment. The gastro told me I could get a DNA test to know if I am career of the HLA DQ genes. I shall note that at that time I have been already tested for food intolerances and gluten came out as positive on that panel. Dairy was fine even though cow products were on the border (and I didn't consume much cow dairy at that time, mostly sheep and goat). I did a test with 23andme and had the results analysed through one of the sites that offer additional dna analysis services. I had one of the genes (DQ 2.2). I started a strict gluten free diet and this time I made sure I did not consume any cross contaminated foods as much as I could. This resulted in slow healing of my face rash and in about 9 months my face has been clean! I couldn't believe it. I was finally able to go our without foundation outside and everyone complemented my clear skin. I never had any specific gastro symptoms I shall say so again I was confused if gluten might be the culpit. I did introduce gluten for few weeks again and finally got blood tests done which, of course, came out negative (doctors said I shall consume gluten at least 2-3 months to get it accumulated). My face was flared up again but I was so confused and I was no longer sure if it is gluten, dairy, else....sigh...I started strict gluten free diet again. Then, I went to a birthday party two weeks ago and on the next day I woke up with very itchy rash on both on my hands. It basically was a very similar pattern on both hands starting around my wrists and spreading to my elbows. I have very sensitive skin and I first thought this is an allergic reaction but I had no clue to what it might be - I did not change any cosmetics, soaps, other detergents, no new jewelries (I have nickel allergy), clothes...nothing new. Yet I started with the usual anti-allergic treatments to find out the rash didn't disappear nor become much better within few days as it usually happens when I have a true allergy. Instead watery blisters appeared and the itch was awful especially approaching the evening. The blisters were small, then they grouped into larger blisters, those blisters that 'became better' turned into a very red scale marks. Again doctors said it is allergy but it responds very bad to those treatments (almost not at all) and even now, two weeks later I still have some blisters left, my skin still itches and it has very strange red color. The rash is just covering smaller area now (not to my elbows) but it is still there..argh! Anyone who has dealt with DH (Duhring's disease), please, advise does this rash resemble what you get with Duhring's: http://tinyurl.com/yc2g2oep, http://tinyurl.com/y9b5g3vk? I start wondering if I could have been glutened on the birthday dinner and with all the dairy around (iodine!) it might have just been an added extra to provoke the rash. I am sorry for the bad photos, I did my best to take them holding the phone with one hand. I also start wondering if what I had on my face might be related to DH. The rash on my face never had those watery blisters, it was more like hives, very very itchy. I might try to find some old photos of my face rash, too. Shall I seek further diagnosis and speak about DH with my doctor? I am so confused as to how to proceed. I even did a iodine patch test last night but my skin became very red and itchy within few minutes of applying the patch so I had to take it off after an hour. My heart was racing for few hours after that and I can still feel the place the patch was applied to as extremely painful.
  24. Hayhay17

    Iodine and DH

    Hi, I have read that iodine can bring out DH more. I haven't been diagnosed with DH but I have this rash that I think is DH. It's on my chin, burns and itches (although not all the time) and has raised red bumps. I started to take an iodine supplement a few weeks back and 2 days later some tiny blisters appeared on my chin. These blisters have been coming and going ever since. I have now stopped taking the iodine supplement but the tiny blisters are still coming and going. I was just wondering if this sounds like DH? Could the iodine have been what was causing the blisters? If so, once the iodine was out of my system how long would the blisters take to clear? Thanks in advance
  25. Has anyone found something that helps alleviate dh. Besides going gluten free which seems to have made it worse each time I get glutened now. Has anyone in the world found something natural that helps of gets rid of dh? It is all over my chest and has been for years. I have only been glutenfree for a month now as I was only diagnosed a month ago, but I am concerned it will never go away. I'm very self conscious, have GAD and this really bothers me. I know I need to wait maybe a year of being gluten free, but there has to be someone somewhere who has found some sort of relief using something preferably natural. How can this be the only type of rash in the entire world that they don't have a cure or safe cream for. Why are we so unlucky? It seems like no one cares about people with celiac due to lack to research, funding and doctors working to help us. How is there not a damn pill for us yet??? Sorry to vent, but this is getting ridiculous!!!