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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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


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squirmingitch last won the day on May 21

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About squirmingitch

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    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. Well Ennis, if he did a colonoscopy on you then you did need to go through that prep (ain't fun is it?). Maybe he did a colonoscopy?
  2. This part is incorrect info. This is info. that only pertains to a colonoscopy. This is not applicable to an endoscopy. For an endoscopy, you only need to fast from midnight the night before. You do NOT have to take laxatives or miralax & clean out your bowels.
  3. An endoscopy requires fasting after midnight & the next day you get the procedure. Easy procedure as gluten-free-Cheetah Cub explains above. This is NOT a colonoscopy which would require the laxatives & so forth. A colonoscopy is used for an entirely different reason & is not used for diagnosing celiac disease.
  4. Help with diagnosis

    Ask anything anytime hon. That's what we're here for. That's what people on this site did for me when I found it & came on asking 1,001 questions. Unfortunately, by the time most people figure out they might have dh, they have taken the steroids prescribed by the doc or dermatologist. Sigh. Hey, I did. I didn't know. Yeh, some people find a little relief from antihistamines. I never could decide if I truly was getting any relief or if it was just ramping down naturally. Let me put it this way.....it wasn't enough to allow me to make a concrete statement. The rash will wax & wane & the rash can come or go frankly whenever it freaking decides it wants to. It will drive you completely batty! Just forget trying to predict it --- that way lies madness. It can & does present whether you're eating gluten free or not UNTIL all the antibodies are out from under your skin. Just so you know. Some people get relief in weeks, some it takes years & years. The rash is sensitive to the tiniest amount of gluten & I mean the tiniest! You have to be rabid about not getting cross contaminated.
  5. Help with diagnosis

    Oh you're welcome! The pictures aren't really that helpful except the elbow ones. The others I think are taken too close? I can't make much out of them. But the thing is, there are lots of skin conditions that can look like that. What matters more is the way it presents, the way it acts. I always put more weight in what people describe about the rash as opposed to the photos of it. Also when they describe what treatments have been tried for it. I was not on prednisone. I was put on Dexamethasone (I call it dex). This was prior to knowing this was dh. I hated that stuff!!! Made me bounce off the walls but it surely did take care of the rash --- rash was GONE. But the minute I stopped, the rash came back & a day or two later & it was worse than before I took the dex. What I finally had to do was taper, taper, taper, taper, very slowly off of it. Then you 're going to have the rash but it will be the "normal" (boy! that's a joke!) rash. Something else I want to mention about the biopsy. The patterning the pathology will be looking for is very easily destroyed. This is why the biopsy has to be taken from clear skin adjacent to an active lesion -- because the lesion itself destroys the patterning pathology is looking for. Scratching will do the same thing - destroy that pattern. SO when the time comes, & you're ready to get your biopsy, DON'T scratch!!!! I know, I know, but you have to control yourself. I tell people, put a band aid over it & then top that off with several layers of gauze padding. At least the you go to scratch, you encounter the padding & you catch yourself.
  6. Help with diagnosis

    OOPS! That should have said thyca.org for low iodine diet. Darn spell check changed it on me!!!! Grrrrrrrrrrr Back after I read your post.
  7. Help with diagnosis

    You want to be off oral steroids 2 months before getting a blood test, dh biopsy or endoscopic biopsy. Off topical steroids about 2 weeks before getting dh biopsy. 60% of those with dh test negative on the celiac serum panel b/c the antibodies are concentrated mostly under our skin although we do experience the villi damage like other celiacs. A dx of dh IS a dx of celiac & no further testing is needed. We do tend to have patchier villi damage though & often experience fewer, milder GI symptoms than celiacs who do not have dh. See: https://www.cureceliacdisease.org/tag/dermatitis-herpetiformis/ Here's how a dh biopsy is properly done. If they take it ON a lesion then you're screwed b/c that is NOT how it's done. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ Just like for the celiac blood panel, you must be eating gluten every single day for the previous 12 weeks for the dh biopsy. It surely sounds like you have dh & you really should get a dh biopsy but you can't right now b/c you took all those steroids. Oh & btw, you don't even know how much I hate to tell you this but almost all of us get a rash backlash from hell when the steroids wear off. NSAID's tend to make the rash flare. High iodine intake is like throwing gas on a fire as far as the rash is concerned so you might want to go low iodine for 2 weeks or so & watch it thereafter when you eat large quantities of high iodine foods. See thyca.org for a low iodine diet (minus the gluten parts).
  8. Almost Glutened by a Raven !!

    Oh my gosh! You are so right; you would have driven yourself crazy trying to figure out how you had gotten glutened. I'm glad you saw it happen & were able to retrieve it before the doggies could get it. Now that the danger is over; it is a funny story.
  9. Welcome to the club you never wanted to be a member of. First & foremost, there are NO dumb questions especially when you are brand new to all of this. The learning curve for the gluten free diet is quite steep and you will make mistakes. When it happens, don't dwell on it & flail yourself; just learn the lesson & move forward. The best place for you to start would be to read our Newbie 101: This will help you tremendously!
  10. Need some help

    If the rheumatologist ordered a celiac panel then he ordered a celiac panel b/c as Ennis stated, there is no such thing as a non celiac gluten intolerance test. So the rheumy was saying you have celiac disease. Yes, you really should get an endoscopic biopsy so you will need to see a gastroenterologist. YOU NEED TO CONTINUE EATING GLUTEN EVERY SINGLE DAY UNTIL THE ENDOSCOPY IS DONE. Yes, it sounds like you have dh. As long as you have a celiac dx then you do not need to get a separate dx of dh. DH IS celiac disease & the prescription is the same --- a strict gluten free diet. Be glad that the rheumy knew what he was doing & ordered a celiac panel for you. Keep that doctor! Also thank him for saving you a mountain of pain. I had joint & bone pain so severely that I was positive I would be in a wheelchair for life in 6 months time. That was just before I found out it was all due to celiac. All that is gone now.
  11. Possible dh

    Yes, large lesions are possible. Yes, they leave scars -- colors range from purplish to tan to white - they will all fade away eventually. Eating out is like playing Russian roulette. Follow the suggestions given by apprehensiveengineer in this thread.
  12. DH help

    You are certainly welcome! I hope you find some answers.
  13. DH help

    OK, this is what I know...... Stress can & does exacerbate many if not all skin issues & that covers the gamut from acne to hives to eczema to dh. I think climate could have an effect, sure. I know with my dh, when it rained or got real humid, the dh would itch a lot more & seemed to be more bothersome. BUT I have heard (not had personal experience) people with other skin conditions say humidity really makes things worse for them. I have also had people say that really dry air does bad stuff to their skin issues (people who live in places like AZ). Also if I got sweaty, my dh would be a pita. Yes, mostly bilateral/some unilateral happens with dh. I will also say that I have read medical texts that say eczema can present bilaterally too. 60% of those with dh test negative on the celiac blood panel. If you want to get a dh biopsy then the same rules apply as do for a celiac serum panel & that is you must have been eating gluten each & every day for the prior 12 weeks. A dh biopsy is taken ADJACENT to an active lesion. It is NOT taken ON a lesion. They take it on a lesion & the pathology is going to say arthropods or some such nonsense. The patterning the pathologist is looking for with dh is destroyed by the celiac antibodies themselves at the site of the lesion. This is why the biopsy is taken on clear skin adjacent to an active lesion. Also the pattern is easily destroyed by scratching so if you want to go get a biopsy then don't you dare scratch! Nearly impossible to do. What I tell people is to put a bandaid & over that, some really thick multiple layers of gauze padding. You go to scratch & you encounter that padding & it triggers you to be aware & not scratch.
  14. DH help

    I can't say for positive but I rather doubt it would go completely away for 2 whole years even though you kept eating gluten. I'm not a doctor but it seems like the stress was a really big issue since you say in Central America you totally de-stressed.
  15. And get a new doc; one that has experience in celiac disease b/c the present one sure doesn't. We call IBS the I Be Stumped diagnosis. IBS is a symptom NOT a diagnosis. In other words, it's a big fat cop out.