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      • Frequently Asked Questions About Celiac Disease   09/30/2015

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


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    About Dan300

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    1. Dan300 added a post in a topic Hiding Dh Possible?   

      I totally agree, seems to work out how much, how long, that's why people over 60 test out so high, Dan
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    2. Dan300 added a post in a topic Hiding Dh Possible?   

      Is your husband having any other symptoms ? or just skin problems. while there are many serious complications from Celiac desease , some people are just gluten intolerant with no villi damage and have only skin DH as a problem . It is important to find out if it is celiac disease , and also if it is , a GFD is the only way to treat it as no topical treatment helps. As far as doctors and dermatolgist are concerned , most won't think of celiac or DH even when you tell them that's what you think you have. I would'nt volenteer that I thought it was DH, all you can do is see what they come up with. Me I went thru 25 years of embarrasing skin problems, after 5 doctors I gave up and went to the VA as I thought it might be Agent Orange from Vietnam. they said no it was'nt cloracne, just don't scratch!! any way last year I came across DH symptoms (thank you and told the VA I thought I might have celiac disease. they said it was so rare that it could'nt be. the VA here uses Loyola Univ. hospital doctors and derms. As they took a second biopsi last year I asked if they were taking it next to the lession? they said no as that was too expensive and would only do that if they thought that's what it might be . the lab report came back with no infections, they did'nt know what else to do and diagnosed me with nurotic excorations !! I gave up with them to and filed for an official Agent Orange claim. I'd be surprised if his doctors came up with celiac disease/DH, but it is important to find out. hope things work out, Dan
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    3. Dan300 added a post in a topic How Big Is This Iceberg ?   

      sorry, I'm new to this and tried using spacing and paragraphing but when I add reply it condenses it all together, thanks Dan
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    4. Dan300 added a post in a topic How Big Is This Iceberg ?   

      Thank you everyone for responding,,,my family is suportive and trying to help me with gluten free food at family dinners, I did show them the DVD "Unlocking the mystery of Wheat and Gluten intolerance" by Thomas O'Bryan. so they are awhare that It's something to watch out for but they or I did'nt have any Idea how serious this is. I did'nt say anything about my grandson as I did'nt want to say I told you so. I'll give it a couple of weeks and see what happens. I know official celiac disease is now 1% and maybe 2% over 60. I remember 15 to 20 years ago that my friend at work had his young daughter was having these serious stomach intestinal problems where she could'nt eat some kind of foods and was in and out of hospitals. did'nt know what the condition was at that time, just felt sorry for them and the problems they were having. in the past while shopping at whole foods I noticed the gluten free products and thought that a lot of people must be following one of the hollywood diets. last december I was tested for sleep apnea and started Cpap, any Darlindeb 25 had posted on the cpap forum and mentioned celiac disease so I looked it up on the web and they showed skin problems as one of the symptoms, I had been looking for my skin condition on the web for a log time and that was the first time something looked like what I had. I know every cronic disease might not be caused by Gluten but from what I've been researching it maybe. doctors should be testing for this or at least telling their patients about the possibility if nothing else is helping so they could try a food elimination diet!!! now I think I'm seeing it every where . my mom came to live with me a while back, she ended up dying of complications of type II diabetis at 68, she had nuerapathy and was always going from Imoniom AD to doculax, she also had skin lesions on her shoulders and was obiese, my sister has been fighting thyriod problems, my oldest son 38 has been fighting depression bipolar problems for years, one of my lady freinds (short stature) has been diagnosed with ostopiena, she was taking ostomax but it made her feel worse. one of her neices is fighting bipolar. another lady friend has ruhmatoid atheritis pretty bad witha noticing bloated stomach and had stomach surgery last winter, I think ulceritis colitis. Her sister (both short stature) has the D&C problem,,, with her younger son 33 having severe IBS problems and her older son 40 had to move back in with her as he has MS and has to use a of my aunts died of ALS as did a coulpe of my other of my daughter inlaws has a sister with MS.......and last week I saw one of my buddy's wife at the grocery store , in the past I had noticed that their son who was 5 or 6 at the time looked about the size of a 3 year old........she asked how I was doing I said better since I went on a gluten free diet because of my skin and that I might have celiac....she said that they took her son to the doctors because he was so small and that he was also having stomach problems,,she said the doctors said he did'nt have celiac as his test were negative.(can you believe that) I said look I'm not a doctor but these test come back negative alot of times,,, told her to please do her own reaserch on celiac and gluten...... this past week with her son , my grandson and my lady's 40 year old with MS has really got me agrivated with the medical profession.........I know there may be other causes for all this but at least gluten should be on their radar sceen,,,,,,,,,,Dan
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    5. Dan300 added a topic in Celiac Disease - Related Disorders & Research   

      How Big Is This Iceberg ?
      I know that Celiac disease of the gut is just the tip of the Iceberg of the gluten and other food intolerance diseases that are plaguing humanity . It wasn't until this past March that I learned about celiac disease , I thank and this forum for a great deal of what I've learned. I've probably had celiac problems for 50+ years, like being short and asked to join the wrestling team my 1st year of high school, they needed a little guy for the lightest ( 92lb ) bracket, I weighed 89Lbs !! I've had skin problems for 30+ years, been going to doctors for 25 years , kept hearing systemic dermatitis----- take these antibiotics... about 4 years ago went to the V.A. figured it might be Agent Orange from Vietnam . they said not agent orange. in May they took the wrong kind of skin biopsie again even after I told them I suspected Dermatitis Herpitiformis. when it came back no infection I asked does this mean it's an autoimune disease, they said oh no it must be your nerves , quit scratching???? In April I started my Gluten free learning curve, and after a while I realized why you need to be 100% gluten free. my D.H. is 90% better (still eat a lot at resturants ) and have lost about 30 lbs as I had become obiese thru the years,,, another symptom doctors don't recongnize. Bottom line I'm self diagnosed but I believe it's the answer as a number of other problems have also resolved... sorry about the long story to get to my question, as I have read about the many symptoms of celiac disease and Gluten/food intolerances with the autoimune problems that come with them,,,, I can't believe what I'm seeing......... I'm starting to feel that half the people I know have something going on thats related to the unrecognized "Iceberg" of a problem !!!!!!!! when I went to my son's house for thanks giving dinner I almost cried as my 3 year old grandson had a red sore the size of a pencil eraser on his face (cheek) with a couple of other small red marks a few inches away, I didn't say anything. some one else asked about it, my daughter inlaw said that he had a pimple come up and that he had scratched it... I'm starting to think that I'm getting paraniod about how big this problem really might be. How big is this Iceberg ? Dan
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    6. Dan300 added a post in a topic Dh?   

      Hi Crimson, your picture of the Iodine band aid patch test looks exactly like mine when I posted may 3rd, it would be nice to see if this is a valid test by trying the same thing with some one who dos'nt have DH , all I know is I started having skin problems 30+ years ago , been seeing doctors about this for 25+ years , in march with the help of this forum learned about DH and started going GFD in april . blood test in may were negative ( 5 weeks GFD ) and dermatologist at the VA biopsied the lesion instead of a DIF test next to it. they said the DIF was to expensive and would only do it if they really thought thats what I had !!! they blew off my Iodine test as they still had my diagnosis as nuerotic excorations , same as 3 years ago when I refused antibiotics again----- the doctor asked me if I thought I new more than him.... I got copies of my medical reports and at my june check up asked the doc about my biopsie , she agreed with my reading that it was negative for infection, I then asked her if that means if I then must have an autoimune problem, she said oh no it must be your nerves ?????? at least I got her to blood test me for nutrition vit ,minerals ect , about 10 different things. only B1 was a little low so I'm taking thiamin. also at that check up I was much improved and they still dismissed DH as it did'nt present like classic hives? symptoms . this is at Hines VA in Chicago with most of their Doctors coming over from Loyola so they should know what they're doing. now almost the end of August and I'm about 95% cleared up, last break out a couple of weeks ago and I can count the lesions I'm still dealing with on one hand , of course the purple marks take much longer to fade , this is the best I've been in along time and my friends have commented that I look better. I feel like I had to be my own Dr House to get my own self Diagnosis as they seemed to resent my research . Sorry about the long response just tired of 25 years of dealing with the medical system and since I'm almost all "Healed " up on a GFD then I must have DH & Celiac ?? thanks Dan
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    7. Dan300 added a post in a topic My Big Comeback Of 2009   

      Hi Jim, glad to see your feeling so great ! I to started sleep apnea therapy in Jan, that helped a lot of my problems but I still had a skin problem that I was dealing with for over 30 years , went to doctors for 25 years , told take these antibiotics, don't scratch , all in my head , ect ! on sleep some one mentioned celiac and the different symptoms which lead me here with all these helpful people, started GFD end of march and 95% of my DH problems have resolved. I'm 61 years old and I'm so thankful to finally get some answers. after 8 months of research I found (net ?) a member of this forum , who explains in detail what's going on with food intolerances, he also says that god made us perfect and that our problems are caused by what we knowingly and unknowingly do to ourselves. take care , Dan
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    8. Dan300 added a post in a topic Dog Food   

      Hi , while I was researching my DH, I Googled "gluten poisoning " one study report , actually from our home page came up about the pet food gluten poisoning (melamine ? ) from china where almost 3000 cats died, but the main point went on to explain that dogs and cats shouldn't be eating gluten filler cereals in their foods as they end up getting all the same cronic diseases that we get. they said that in the wild on their natural diet that dogs could live up to 30 years and cats up to 40 years . something to think about , Dan
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    9. Dan300 added a post in a topic In Search Of Dietician/ Nutritionist In Chicago-area.   

      Hi Anne, I attended a Celiac lecture by Dr. Tom O'Bryan ( ) from Evanston , very good. also went to a celiac meeting at Whole Foods , the speaker was Deepa Deshmukh ,who specializes in celiac , from Lisle ( ) also very good. hope this helps , Dan
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    10. Dan300 added a post in a topic Any One Over 60 Living With Celiac   

      I just turned 61 , 2 weeks ago, and have had a skin problem (DH ?) for 25+ years, after 10 doctors, I had to do my own research and went Gluten free at the end of march. my lessions are healing (always took a while) and hadn't had any new break outs except for about 3 weeks ago when I had a six pack of Mikes Hard lemon aid ,Malted? (over 3 days ) and a large bag of candie ( bulls eyes, caramel cremes,,,,wheat flour) while driving back from Florida.......... broke out the next day !!! so I'm 99% sure I'm Gluten intolerant, this is after the doctors insisted that I didn't have Celiac disease . Went to a lecture by Dr Tom O'Bryan, he showed us a graph on what ages people where finially getting diagnosed ( average 5 doctors and 8 to10 years ) it showed that 25% finially got diagnosed at 60years and older.... he showed that Celiac ( official biopsi of the gut ) and Gluten intolerance are the same,,,,,,,,, just a matter of degrees and how long , and also that it can affect any organ in your body including your Brain (migraines , depression ect ) He also said that we still don't know all the DNA genes yet as a lot of people have this problem and don't have the gene trigger , I've also seen on the web reciently that "as much as 30% of the American population is Gluten sensitive" I was at a talk tuesday night at a Whole Food store, on gluten free cooking with also a certified dietitian nutritionist, as her family was from India she reminded us that 2/3 rds of the world is on a gluten free diet, some thing to think about..... I know the drug companies don't want to hear about a cure without drugs $$$$$$$ and I think that the doctors are only trained it treating problems with medications so thank you to forums and web sites like you and the intertnet we are learning on our own how the world works , no we're not doctors but knowledge is power Dan
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    11. Dan300 added a post in a topic Nsaids And Dh   

      Hi Lola, Dr Tom O'Bryan ( a Chicago area Dr ) travels around the country giving lectures to doctors and the public about Gluten intolerance, in part of it he talks about migraines where a study was done with 10 severe cases that tried thr GFD. 7 had full recovery , 2 no change , 1 refused the diet. hope this helps Dan
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    12. Dan300 added a post in a topic Iodine Patch Test   

      Update, going gluten-free is kind of hard at first, especially when your not sure that's the problem, did have a breaded chicken sandwich one night about the middle of april and my birthday cake on may 3rd,, but even with that I had'nt had any new break outs in the last 2 or 3 weeks and I'm healing up pretty good. until this past weekend when I was driving back from florida to chicago, still had about 700 miles to go, had my fill of banannas and oranges soI bought some candy to munch on, Bulls eyes, carmel creams ? 1 serving 3 pieces = 170 calories , 7 servings per bag, after I oppenned it I then read the ingreedients, 1st listed wheat flour !!!! since I wasn't sure if I really had DH I eat them , got home ok but buy monday night I had individual break outs on my lower rt leg, on the side of my right index finger, left elbow area, top of left shoulder, neck behind left ear and several in my scalp. I guess I now have my answer, this might also have helped to as I had a doctors appointment the same day (monday) at the VA , she admitted she didn't know much about glueten intollerance, but she listened when I said I thought that I needed agI agg and agm blood test, she looked them up on her computer and had me go right down to the lab for the test. hope to have the results friday. as I'm clearing up I already know but I'd like to make it official so I can make my sons and grand kids understand what to watch out for. I'll let you know how the blood work comes out, thanks Dan
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    13. Dan300 added a post in a topic Iodine Patch Test   

      thanks Franceen for the reply, about the end of march I went gluten-free, no toast, pancakes, waffles ect and Beer!! any way the VA did another biopsy 4/09 and when they were going to do it I asked if they were going to do it next to the unruptured papual and do a DIF test on it they said no that, that test was to expensive and that the one they would do on the actual blister would check for a couple of things and if it indicated DH then they would do futher test. the doctor called me on the 22nd and said that the biopsy came back with no infection, just some irritation and that he would schedule me to come back in 3 months. I came in on the 24th to get the stitches removed by the nurse, I had her bring the doctor in as the biopsed papule was still red and raised up ! I asked the doctor if he had ever diagnosed DH before, he said about 15 times and that he was sure I didn't have it because my break outs weren't clumped together like herpies . he RX'd some more meds, anti itch pills, antibiotic cleanser, and ointment. got the shipment fri 5/1 . here is what I got Doxepin hcl 10mg caps (anti depressants) off label anti itch, Dyna-hex4 chlorhexidine gluconate 4% antiseptic (used by surgions to dissinfect thier hands) , and Triamcinolone Acetonide ointment (a synthetic Steroid ) all this when I don't have an infection ?!!!!!! anyway back to the Patch test, here is what I did this week, purchased a 2$ bottle of Iodine Tincture 2% from walgreens, yes I know they talk about using a 30% solution, don't know were to get it. active ingredient: iodine 2% ingredients: alcohol 47% by volume, deiozed water and sodium iodine 2.4% on wednesday took a med band aid used the dropper to cover the gauze pad with the iodine and applied it on my upper forearm about an inch below my elbow. about 4 hrs later before I went to bed I re applied more iodine to the same band aid. thursday morning I removed the band aid , skin had a square patch of iodine color , looked a little ruff with maybe some small bumps. put on a fresh band aid for the day without anything on it, thurs night before going to bed I put on a new band aid again with iodine. got up friday morning, as I peeled off the band aid a 1/2 by 3/4 inch piece of skin came off with it, with clear serum ozing out like my leisions . about 36hrs for this to happen I think this is a positive test for DH enless I was just reacting to the alcohol which should have evaporated pretty fast. also a side note since going gluten-free for the last 4 weeks I feel much better , lost about 12lbs (was pushing 275! ) and have not had any new break outs for this past week ( except for the self induced 0ne ) sorry about the long rant , thanks again for the help Dan
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    14. Dan300 added a topic in Dermatitis Herpetiformis   

      Iodine Patch Test
      Hi , new here 1st post, I've been reading here about DH for about a month now and like most people seem to have to find out on my own what is really wrong. I've had this skin condition for 25+ years (I'm 61 ) been to like 7 pcp's and 3 dermatologist , they want to call it systemic dermatitis and just say don't scratch and take these antibiotics ! been going to the VA because I thought that maybe it was from Agent Orange ,but they said it was'nt cloracne . more later , my main question is has anybody tried or know anything about doing a Iodine patch test for DH to react with any IgA in your skin to cause a skin reaction/blister ? thanks Dan
      • 5 replies

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