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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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where 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 Avalon451

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  • Birthday 09/13/1964

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  • Interests Reading, cooking, hiking, family, church
  • Location Seattle area
  1. Welcome to the boards, and don't worry about rambling. You have an awful lot to deal with, and so many of us have been through it all. Osteoporosis and osteopenia are BIG markers for celiac. Because there's so little absorption of nutrients going on through those "split and flat" villi, the bones get weakened; thus your poor little girls' fragile bones. The good news: you are going to be amazed at how much better she gets on a gluten free diet. Start looking around here, reading up on all the information that is available about how to get started... put her on 100% gluten free immediately. Sometimes it takes awhile to heal and see improvement, but some people see very dramatic improvement in a short time. It seems like I've read more about kids improving quickly, and adults take longer. Gluten free sounds horrible and hard to do-- but with all the products now available, it is much easier than it sounds to transition, especially if you put a positive spin on it with your daughter. We've been gluten free about 3 months now (my daughters are 10, 14 and 17 and are all celiac, and I am gluten intolerant) and I was surprised at how well they adjusted. Best of luck and keep coming here for more information, and vent whenever your want!
  2. Supervisor Problem

    Why don't you just eat beforehand, go, order whatever, and then play with it? Cut it up, push it around on your plate, sneak bits into your napkin in your lap for later disposal. He's paying for it, not you. If it makes him happy to see you order food, go for it. You don't have to eat it.
  3. Ugh, I feel for you. I'm in the same place. Been gluten-free for about 2 months, saw initial improvement, but back to where I was in terms of D. I know it's probably the dairy, but I just love my morning mocha or hot chocolate. I'm quite picky about flavor so I haven't tried alternatives yet-- my daughter's soymilk is so sweet it makes me gag. Le sigh.
  4. Udi's Bread Tip

    Mine goes stale/moldy really fast if I don't keep it at least in the fridge. Freezer is better if we're not going to be eating it within a few days.
  5. Is This Dh?

    The biopsy isn't painful because they numb the area first. I mean, you get the needle pinch, of course, but the rest is painless. My 16 y.o. DD had two biopsies-- the first one, taken on an older lesion on her elbow, they thought it was psoriasis, and it came out weird, so then the dermatologist thought of DH, and did another biopsy on her back, next to a fresh lesion. My daughter did get one stitch on each punch biopsy. She was all numb and had no pain, and afterward it was fine once the numbness wore off, just a little mild discomfort. Don't stress over it, it's a much better option than 3 months' gluten trial and an endoscopy! Hope you figure it out soon. Do realize that it can take awhile after going gluten-free for things to clear up. It can be two years, when you've had it as long as you think you have. Good luck!
  6. Purposely Glutened Myself

    My daughter's first DH biopsy was on a "not very fresh" lesion also, and was inconclusive. She redid the biopsy on a fresh lesion, and that one came back definitely DH. There's a high rate of inaccurately-done biopsies on DH, unfortunately. Might as well have the blood test done, too-- see if anything shakes out.
  7. My daughter was the one who was diagnosed first, because of the itchy rash on her elbows and knees. The blood tests are notoriously inaccurate for children. I would ask for a referral to a dermatologist and have the rash looked at. It may be awhile before you can get in, so many derms are booked way out, but don't have her go gluten free before then, so the testing will be more accurate. The derm will need to test right next to a fresh breakout area. The skin biopsy is so much less invasive than the endoscopy, and anyway, your regular doc is unlikely to refer you to a gastroenterologist since her blood was negative. After my oldest was diagnosed, we had blood tests on the younger two, and they were sorta positive and really positive, but we decided not to get them scoped. Good luck!
  8. Thanks for all your replies. The support here is so great! This morning she is running a fever, and tummy still hurts, but not in a nauseated way, more like there is a heavy weight on it, she says. Also pain on urination, so we may be looking at a urinary tract infection, maybe from being dehydrated. I have a doctor's appointment for her at 9:45. I'm not worried about school CC; she goes to a tiny private school, and they bring their own lunches and eat at their desks. Everybody at the school, students, teacher and other parents, are aware of her dietary restrictions, and she's pretty savvy about not sharing treats with anybody else. Also, she originally got sick the day after I used an onion soup mix that didn't have gluten in it, but was manufactured on shared equipment? So maybe that was it. Or, again, maybe it's just a virus. Sigh.
  9. Ugh, so worried and frustrated. My DD9 might be our "canary in the coal mine" as far as glutening. The girls have been gluten free for 6 1/2 weeks. Suddenly last Wednesday the 9 year old started complaining that her stomach hurt, and she was convincing enough that I came and got her at school. She lay around all day, threw up around 5 p.m., again at 8 and 9 before bed, and then slept through the night. The next day she had diarrhea and lay around some more, but started taking clear fluids ok. Friday she went back to school, though she took it easy. She seemed pretty ok by Saturday and Sunday. The idea that it might have been a glutening occurred to me, although I thought that 6 weeks gluten-free was pretty early for her to start reacting so violently. So I thought maybe it was a virus (though none of the rest of us got sick). Also, previous to the positive blood tests for celiac, none of my kids have been frequent barfers. They normally have to be really sick before that happens. This morning, Monday, she woke up with stomach pain again, and after breakfast it got bad. She has been in bed all day, and finally threw up at 4 p.m. Had some D also earlier in the day. I swear I have no idea how she could have been glutened; we have a completely gluten-free house and kitchen. The only thing I can think of is that last night, taking potatoes out of the oven, I laid a couple of them momentarily on the old pull-out breadboard (which we no longer use and my husband is going to replace; I just unthinkingly yanked it out this time) but she hardly ate any of her potato, anyway, and certainly none of the skin where it touched. Could she be showing signs of sensitivities to something else? Why would it show up now? Man, I better toughen up and get used to this; but right now, seeing her lying pale in bed and not wanting anything other than water just breaks my heart. I feel like such a terrible parent. DH is a wonderful husband and dad, but one thing he can't stand is to see me upset-- it makes him so upset-- so I can't show my worry and fear around him, and of course I don't want to scare the kids, either. I've had to pull the car over twice today to cry before I got home. I guess my biggest fear is that somehow I won't be able to figure out what her sensitivities are, how to stop them, how to keep her feeling well... she'll get sicker and sicker, end up emaciated in the hospital... you know how an obsessive mom's mind runs. I keep telling myself to get a grip. Thanks for listening to me vent.
  10. Rice

    You could be reacting to them. Potatoes are part of the nightshade family, and some people don't do well with them. Nightshades include potatoes, tomatoes, peppers, and eggplant. It seems like I've read on here that some people with celiac find they have other sensitivites, too, nightshades included. You might want to try cutting those out and seeing if it helps.
  11. Those sound like scary symptoms. I hope you get some answers on Monday. I just wanted to say that the flashy vision thing reminds me of my ocular migraines. Is that the same thing as "silent" migraines? I was surprised as anyone to find out that ocular migraines are really migraines, but they don't always hurt. Mine start as a blurry spot in the center of my vision-- can't focus or read because the center is blurred out-- then it spreads in a ring formation out to the edges of my vision. The edge of the line is blurry/flashy. It makes me disoriented for hours afterward. There is more information online, with descriptions, etc. They normally don't last long (20-40 minutes, maybe?) but they leave you feeling disoriented and stressed. My GI doc said that they can be associated with celiac.
  12. I thought the same thing: by the time the nutritionist could see us, we had already been gluten-free for 6 weeks. However, I saw her anyway. She is the nutritionist for Seattle Children's Hospital, and she was very well informed. This was last Tuesday, at our follow up with the GI doc. I started off telling the nutritionist that I had already done tons of research and had 3 cookbooks. So she just skimmed through the material, pointing out what we might find helpful, and she did have some very good information about local gluten-free suppliers and restaurants, as well as reams of online info, current "safe" lists, etc. Then she just sent it all home with me to refer to when needed. One new thing I learned: she said that any time it said "Manufactured on shared equipment with wheat" that it was an absolute no for us. I mean, I kind of knew that but thought that maybe this early on, the CC wouldn't be enough to bother us. However, my youngest was quite sick that day, vomiting and D, and I think now it might have been from the onion soup mix I used in a recipe the night before, which had no gluten in it but stated that it used shared equipment.
  13. Yup, although when I said she had two biopsies, what I meant was that the first one was on her elbow, on a lesion that was not particularly new. The dermatologist thought it was psoriasis. When it came back unreadable because of the damage, she started suspecting DH. The next biopsy she did was on a new lesion on DD's back. She told me that she was supposed to take one directly ON the lesion, then right next to it on clear skin, like 1/4 inch away (so two samples) so that the lab could compare them side by side, knowing that they came from the same area. One would be too damaged to read the fluorescent dye, the other would show the subcutaneous damage before it erupted. I hope more dermatologists become very familiar with the proper technique and the rate false negatives can be brought down.
  14. Couldn't hurt to call and ask for the full celiac panel, including the genetic marker. You shouldn't have to wait for a month; they can order the tests. Be specific and tell them you need the FULL panel (somebody here with more experience than I will know the ones to ask for right off the top of their heads-- I have still have to google it ), especially since the test can be false negative. But if their blood shows up very obvious for celiac, you'd be kicking yourself for not checking that first with an easy blood test. Don't go gluten free before then, or before you get the results back, in case they are way positive and the docs want to do the biopsy to confirm. There again, there are so many posters I've seen on here who are regretting not getting their children officially diagnosed, so that the public schools have to make accomodations for them regarding food, etc. when they get to school age. On the other side of that coin, my younger two tested fairly positive on blood after my oldest was diagnosed, but we didn't have them scoped. Mostly because they really panicked at the thought of going through a scope. So we are just assuming they are all three celiac. I may regret that later, but we've been gluten-free for over a month now, and we're not looking back! Best of luck to you, hope you figure it out for your little ones!
  15. Can you see a dermatologist to have your rash biopsied for DH? That is how my daughter was diagnosed celiac. They would need to biopsy a current, active lesion-- on the lesion, and then right next to it on the clear skin. It can be hard to get a good biopsy unless the dermatologist is familiar with the procedure (ours is, but it still took her two tries). A postive skin biopsy for DH is as good as a positive endoscopy biopsy for celiac diagnosis. I feel for you with the horrible itching. DH rash is supposed to be the worst itchiness known to humans. Not unusual for my daughter to wake up with the sheets bloodied because she was scratching her knees. I hope you get some answers (and some relief) soon!