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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Barbie Wickham

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About Barbie Wickham

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  1. DH Photo Bank

    MendyLou and RainJane, I got relief within 72 hours of starting the Dapsone, 50 mg a day and a strict gluten-free diet. After a month, I dropped dosage to 25mg a day am almost completely free of rash. Only a few bad, stubborn blisters on my bottom. Best of luck to you.
  2. Possible DH - It is driving me crazy

    MeToo & Squimingitch, I too had many biopsies & cultures that came back negative which I now know is because they were not performed properly. I wholeheartedly agree on NO to the cortisone shots, I had two big loads, a week apart, and initially my rash started to get better, but, within 2 weeks, it came back with a vengeance and a life of its own. I then went on a 6 month treatment of oral prednisone (60 MGs a day) and it did nothing for the rash, only caused me more side effects and was horrible to taper off of it. I would avoid steroids at all costs if you can. Even the topical cortisone creams. The Dapsone has been a wonder drug for me. I’m aware of all it’s side effects and do hope to get off it soon. I started at 50mg a day and 3 weeks later dropped to 25 mg a day. I’ve tried completely stopping it twice, but within 2-3 days the Rash returns and I cannot handle the pain and itch (after feeling such relief!) that I will stay with it a few more months. And of course, I’m gluten free for life. These pics were from my all time worst, probably a week before I was dx’ed by our very caring family Doctor, (on his own time over the weekend) - I then had a Gluten blood panel test and a proper skin biopsy which both confirmed his diagnosis - so much for the dozens of “specialists” I saw & spent so much money on, all the time for light therapy 4x a week, the many medications for misdiagnosed diseases, Scabies, excema, herpes, psoriasis, spider bites, impetigo and several other “guesses” or even the “Sorry, I just don’t knows!”
  3. DH Photo Bank

    I am a recently diagnosed & confirmed Celiac with DH. I had the Rash for 1 1/2 yrs with my bottom being the worst, then my elbows, hands, wrists & top of knees. I started 50 mg of Dapsone a day (I too am allergic to Sulfanomides, but my pharmacist & Doctor researched the molecular components of Dapsone and both felt it would be ok to try and see if it would cause me an allergic reaction, they felt it would not, and thank goodness I tried it as I did not have any reaction, only some relief after 48 hrs) and I also went immediately to a gluten-free diet. I am about 6 weeks post diagnosis and I am about 80% cleared up. I’ve reduced Dapsone to 25 mg a day and am strict about eating gluten-free. I will try to post some more pictures, this site limits to direct posts so I’ll also try to use photobucket. So far all of the pictures posted here look exactly like my rash and the descriptions of itch, weeping & popping blisters... sound like my own words. So very painful and the itch is just cruel! I never really found any topicals that really helped, GoldBond with Lidocaine was good, Aquaphor (instead of Vaseline) was also good when sores dried up, and prescription Alvecyn (gel or liquid spray) helped to dry up and debride my skin. I lived on ice packs. Hoping everyone finds help and some relief from this intense, life robbing disease. You can see the fluid filled, oozing & bloody blisters that never would heal until I was dx’ed and confirmed as a DH Celiac and started Dapsone and gluten-free diet.
  4. How Soon After Eating Gluten Do You Have Breakouts?

    Hi SugarSue, I find that after accidentally “glutening” myself, I first feel the itch about 4-6 hours later and then within a few more hours, a bump will start to form, either on my hands or fingers, or my worst area, my bottom. My bottom has almost completely healed, however, it is still discolored all over with a purplish tone, almost like a slight bruise underneath my skin. (See pic) From what I’ve read and from my Drs opinion, it is from the last 2 years of eating gluten and it’s the deposits still lingering in my dermal layer. I read it can take 6 months to 2 years of a strict gluten-free diet to completely rid your body of these deposits. They consist of the “IGA” and several other lettered terms I don’t exactly remember all of them correctly. I am amazed at hidden gluten in our foods...soy sauce, dressings & sauces, and especially in candy... red licorice, gummy bears etc. & some chocolates. Chapsticks, too, can contain gluten. I must be vigilant about label reading before I just pop anything in mouth. When in doubt, I toss it out! (Out of my gluten-free part of our pantry!) It must be hard to monitor your sweet 7yr olds daily eating... but after a few mishaps and the rash and icky feeling returning, it’ll help us all reinforce knowing exactly what we’re ingesting! Best wishes to you all.
  5. Pre-Diagnosis Dr Experiences/Tests

    Wishing you and your daughter a speedy recovery. I think going gluten-free and feeling better is a good sign in which way to go. For all the negative test results I received, the full Gluten Panel bloodwork finally showed I was sick from gluten and with my family history of Celiac Disease it all made sense. The biggest proof for me though was my body responding so quickly to a gluten-free diet and watching the rashes and blisters fade away and no new ones popping up. I did choose to take a low dose of Dapsone, 25mg a day, and I feel it has given me a jumpstart to help my damaged immune system fight the existing deposits in my body. Best of all to you and your daughter!
  6. DH exacerbated by sweat?

    My fingers went from little bumps to huge fluid filled itchy blisters that would pop, refill, pop again and then would finally scab over. Almost like a burn blister. Just an incredibly painful experience. I so hope you get a proper dx and you’ll be amazed how quickly you will begin to heal & feel better!
  7. DH exacerbated by sweat?

    Jane, my rash didn’t go to the bloody, pressure filled blisters until about a year in. They would get filled with so much fluid they would pop on their own, especially my bottom area and elbows. I hope for you you get a proper dx quickly as I found with each passing week my rash worsened and basically took on a life of its own! Of course, I was poisoning myself daily with Gluten, building up more and more deposits, which just lead to more breakouts. And each breakout got steadily worse, leading to the bleeding and deep scabs that lasted for weeks. I wish you a speedy dx and a quick recovery next month. Do keep us posted on your progress. Happy Holidays.
  8. DH exacerbated by sweat?

    Jane your fingers look exactly as mine did! So very painful, I remember feeling like I had broken a glass and shards were stuck in my fingers and hands....
  9. DH exacerbated by sweat?

    Those elbows look very familiar! I had that rash for a little over a year and a half, and with each break out, the blisters would change, worsen in appearance and the itch got insanely itchier. The only topical product I found that helped a bit, was GoldBond lotion or liquid spray with Lidocaine.... Drs had me then just use Aquaphor (the Vaseline jelly type ointment) So, yes, I’ve read too that blood tests can have false negatives & positives. However, my Dr ordered a complete blood work up and then added a special Gluten panel order... I gave about 6 vials of blood for all tests. I was having so many vitamin deficiencies and off the charts inflammation levels throughout the year & 1/2... it all made such sense when we looked at all my symptoms & also the positive bloodwork. He told me I lit up not like a Christmas tree, but like the entire tree lot. It also made sense why all biopsies and cultures kept coming back as “unknown uticaria” The specialists were taking samples incorrectly. What should have been a somewhat easy diagnosis turned into just a nightmare. All the misdiagnosis (scabies 3 Times, spider bites, excema, herpes and 3 Drs flat out just said I don’t know, try another Dr.) and the heavy medications prescribed (methatetrix, Otesla, shots of cortisone followed by 6 months of oral steroids, the anti fungals and the parasite pesticides!) I was a mess! All unnecessary and many were very harmful to my overall health. Since I’ve not had many stomach problems, my Dr. & I decided to just go with the gluten-free diet and Dapsone and see how I responded. Incredibly within 2-3 weeks the Rash was gone from everywhere except for my very worst area, my bottom. I may have some intestinal testing done next year to be sure there’s no damage there. So between the positive blood test and diet changes are working so well, I’m convinced I do indeed have DH. It’s also genetic and I have 2 first cousins with Celiac Disease. I’ve also learned from people here and the great information site provides, you must still be eating gluten for tests to be accurate. I can’t imagine eating the poisonous Gluten to further confirm DH, so I chose just to go with Diet and Dapsone. I hope you get proper results next month and on to a rash and itch free life! Below is the picture my Dr found on his own time, on his “weekend” research... he was so excited he phoned me and had me come in first thing that following Monday morning. That picture looked exactly like me! I am his first case of DH in over his 30+ years of practice.
  10. DH exacerbated by sweat?

    You might want to give a try to Aquaphor, (the jelly type, just like Vaseline) instead of the Vaseline. I had several Drs tell me it is much better for your skin than petroleum based Vaseline. I found it protected the rash and blisters really well, but I also felt like my skin was able to “breathe” easier than with the Vaseline... Best of luck to you with your upcoming diagnosis!
  11. DH exacerbated by sweat?

    Victoria- In reference to my previous replies to Jane, Squirming Itch & Cast Iron Tummy, I’m trying to upload a few more pics of my ever changing (& daily worsening of my DH rash). Site only allows small uploads... I think the iodine is not just bad for the Celiac Disease but your Thyroid Gland as well, it’s not intended as medical advice, just a read observation from this wonderful forum. Best of all to you, wishing you all a healthier and therefore a Happier New Year in 2018!
  12. DH exacerbated by sweat?

    Jane, oh I feel for you... I can’t imagine even trying to exercise at the height of my unyet dx’ed DH.... just getting dressed was a dreaded experience for me. The symmetry and bilateral rash and blisters were big clues to my Hero of our family Dr. (not the dozens of specialists I saw!), along with rash on the pressure points of my body... hands, elbows, tops of thighs and the ultimate worst area, my bottom. I posted some pics prior to this, in reply to squirming itch and cast iron stomachs posts... I’m going to try to add a few more pics here, (site only allows a small upload for each reply). I hope your provisional Dr appt went well and your questions were answered. I’m 2 months into a gluten-free diet and a 25mg daily dose of Dapsone . Every time I try to stop the Dapsone I suffer a new breakout, so I’ll continue until my immune system gets stronger. I had my Thyroid gland surgically removed almost 40 yrs ago due to Hyper-Thyroidism and a very large goiter. I then quickly went to Hypo-Thyroidism, (Graves Disease) and have since taken Synthroid daily. I’ve read Thyroid problems are quite common amongst Celiacs and/or Celiac DH patients. Best wishes to you of a correct diagnosis and good health to you (and all of you reading this post) in the upcoming New Year!
  13. DH exacerbated by sweat?

    A picture is worth a thousand words!
  14. DH exacerbated by sweat?

    Such a horrid rash, I ended up wearing my hubbys soft cotton boxers, also turned inside and waistband rolled over to prevent the raw rubbing. And yes, no way was a bra in my wardrobe! Good ol seamless cotton tanks, not the bra strap type, was the best I could handle!