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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 Libbyanne

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  • Birthday 02/11/1983

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  • Gender Female
  • Interests Dogs, Dog training, Reading, Writing, Running, Researching Gluten intolerance!
  • Location Des Moines, IA
  1. State Fairs

    I live in Des Moines and am pretty new to this but you might check out the Central Iowa Celiac Connection website: Barb Huyette is the head of the group I think, and I know she has contact info somewhere on the site, I just don't have the time to look for it right now. When I have some time I'll browse and post what I find. If you find out anything please reply to me - I would LOVE to know what I can eat at the fair!!! Libby
  2. I had a similar experience - although I never really had any gall bladder attacks. I would have sharp pain under my right ribs - especially when I would laugh. I also remember having very bad D and nausea a lot. I went to doctor after doctor until one doctor finally did the HIDA scan - before that they had done an ultrasound and since there were no stones they ruled out gallbladder. The HIDA Scan showed that my gall bladder was functioning at a low level so they figured that's what was causing my problems. I had it removed and my advice to anyone I talk to today is make sure that is the cause of your symptoms before having the surgery because the recovery is not fun . I had horrible D, and nausea for a few months...everything went straight through me. I continued to go to doctors who all said this could go on for a year (A YEAR!!?). I had an endoscopy done and the result was "acid buildup" well I was also throwing up a lot so that would explain the acid... Anyway, I recently went gluten free even with blood work coming back negative for Celiacs. I had my results from that endoscopy sent to me (done about 2 years ago) and it doesn't come out and say that they tested the biopsy for Celiacs but it does say "Crypt to Villous ratio is about 1:3 or 4" I know that is the normal ratio but I don't know if that means they actually tested, or maybe it means they wouldn't have to?? I've been meaning to call that specific doctors office and ask (the hospital didn't know the answer) but haven't gotten around to it. If anyone has any insight I would love to hear. Anyway, after discovering that gluten-free diet solved all my problems I began thinking back to this surgery and wondering if the two are related so it's nice to hear that it's being researched. I wish I could have seen Dr. Joseph Murray (in the article posted by nasalady) since I was at the University of Iowa when all this happened!!
  3. I never used to get headaches at all, but growing up both my mom and my older sister would get horrible migraines. After going gluten free (something I decided to do on my own even though in previous years blood tests have been negative) I've noticed that a headache (not a migraine though) is often one of the first reactions I have after being glutened! This is usually preceded by stomach pains and followed by extreme - want to put my head on my desk and sleep - lethargy, and brain fog. Neither my mom or my sister have been tested but my mom tried the diet when I started (which was very helpful for me ) and noticed improvements in many areas. So, IMO headaches/migraine are definitely connected. Oh! And...for any Dr. Oz fans out there..I learned from him about the Vagus nerve which runs from our brain to our stomach - So it's not unlikely that the migraines could be connected to digestive problems...
  4. So what do I do now. Do I just suddenly tell people I'm gluten intolerant? I know I'm going to get flack for trying to compair with my DS even though I really am not like that. What I really want is some sort of diagnosis from a doctor. I know this won't change anything but I feel that it would give me some peace of mind and put some weight to my words. So I will be trying to find a doctor who will listen to me. Do I go straight to a GI specialist or do I just find another general practitioner? Should I call my old doctor and ask for a copy of my test results? I can do that right? I don't even know what test he ran. Speaking of which, since I have been mostly (I would say ~95% of the time) gluten-free, what test can they do that would answer anything? Will the dicyclomine really help? Seriously what should I do now? One upshot to all this is that I now feel vindicated. All the times I've sat on the couch or in bed and told DH that I feel sick now makes sense. Since he's the one who has pushed me to look into celiac disease for myself I'll forgive him for not believing me back then.
  5. Startling Realization? Subway Bread.

    Thanks for posting this question, r0ckah0l1c. I was questioning the legitimacy of my gluten intolerance as well after I had a sandwich from a place called Jimmy Johns - which uses plain french bread. I remembered it never bothered me before, so when I decided to go back on gluten (to get tested) that was the first thing I ate and I didn't seem to have any reactions to it. I also remember realizing, right before my self-diagnosed gluten intolerance, that the plain, french, white bread at subway didn't bother me as much as when I would eat the 9-grain Honey Oat bread. I too started doubting whether or not Gluten was the culprit...and I'm still dealing with it..sometimes I know for sure and other times I wonder... Honestly, I'm a little frustrated right now and wish I could have a straight diagnosis so I would know how careful I need to be, or if I need to keep looking for the problem. I too, like many others, would like the diagnosis so I have more credibility when telling others I can't have gluten. I've requested to have all my previous blood work sent to me to see what my levels were when they tested me for Celiacs last year. Maybe that will help me decide whether or not to go back on gluten in order to be tested again (pretty much went back to gluten-free after my moods went haywire again from a 3-day gluten challenge). Ugh..thanks for letting me vent...
  6. Thanks for the info, Karen. I'm not sure I'm up for 3 months...especially during swimsuit season . I've requested to have all my lab results sent to me so I guess I'll start by making sure they tested me correctly and go from there.
  7. Hi Darkhorse! Any chance you can update us on what you decided as far as going back to gluten or if you've had your tests? I am in the same boat - been gluten free for 3 weeks but recently started to add it back in so I can get tested. At first I was excited to eat pizza again (I hadn't made it far enough to bake my own gluten-free pizza yet) but now I find myself avoiding gluten foods because of all the reactions I have. I very much want an answer but I also want to know how long I need to go back on gluten for! It's especially hard after I've told people around me that I'm not eating it and if they see me eating it I feel like they will disregard me as a hypochondriac who just wants attention . That is so far from the truth...I just want to know for sure so I can stop worrying that it might be something else AND like you I would like my sisters to get tested as I see a lot of my symptoms in them...
  8. I have been tested for Celiacs before (maybe twice) via blood tests but was always just told the tests were negative. I never saw my actual results so I don't know if they were high or if they tested for everything necessary. After dealing with "IBS" problems for years (and now realizing all the other problems I have that are related - nightmares, vertigo, mood swings, hunger, brain fog, etc.) I stumbled upon an article discussing Gluten Intolerance and decided to give the gluten free diet a shot. I felt better instantly, in all areas, and stuck with it for three weeks. My doctor is still pushing for a colonoscopy to rule out Crohn's but I've decided if I'm going to do that I would also like the endoscopy to test for Celiacs. My question is ... since I was gluten-free for three weeks, how long would I have to go back on gluten in order for the test results to be accurate? Also, if I wanted to try the blood test again first, or even have them test for Gluten Intolerance first, would the time "back on gluten" be the same for those tests?? I'm pretty miserable when I'm eating gluten so I'm hoping I wouldn't have to do the full 3-month gluten challenge that I keep hearing people talk about, but I do want the results to be accurate. Any advice is appreciated. Thanks!
  9. Thanks so much for sharing!!! When I told my doctor I thought I was gluten intolerant he basically scoffed at me and said "well there is no way to test for that". I think it's time for a second opinion...
  10. Oops. Mixed Up Doritos

    Thank you for posting this! I'm new to the disease/intolerance (haven't exactly figured it out yet) and I remember a friend telling me Doritos were okay (she has 3 kids with Celiacs). So, on a binge I grabbed a small bag at the gas station this afternoon and scarfed em down without even bothering to look at the ingredients . Then, as I'm down to the crumbs I decide to take a look, mostly just out of habit now (although I need to make it more of a habit to look BEFORE I indulge) and that darn word "WHEAT" just jumps right out at me. Incidentally, a half hour later the darn chips are causing pain, nausea, and fatigue...I am miserable and at work for another 4.5 hours and then have to go to a second job at 6:00 Sorry..just had to get that off my chest. It's nice to know I'm not the only one who has made that mistake...
  11. This is my question too! I went gluten free for three weeks and still was having some of my symptoms. My doctor (who is very skeptical that I am Gluten Sensitive or have Celiacs) really wants me to do a colonoscopy to test for Crohn's. I'm not against doing this and have decided I will but I would like to kill two birds with one stone and have them do an endoscopy also to test for Celiacs. question is if I've been gluten-free for 3 weeks, how long do I need to eat gluten before doing the biopsy in order for it to be accurate. I know I've heard 3 months but does anyone know if it needs to be that long if I've only been off gluten for 3 weeks?? I don't want to have to go through swimsuit season bloated all the time but like I said...if I'm already going in for one procedure I would like to get them both done. I appreciate any advice! Thanks!
  12. Gallbladder/ncgi

    Also, (I tried to edit my reply but I don't think it worked ) I didn't have any stones either! Ultra sound was negative for stones but the HIDA scan showed my gall bladder was just functioning at a very low level. I had very sharp pains below my ribs (especially when I would laugh) I had been given every excuse from the doctors from the pain being because I wore an underwire bra to fibromyalgia.
  13. Gallbladder/ncgi

    Jen - I want to give this advice but keep in mind I am no doctor and everyone's body is different so don't only take my word. If I were you (or if I could go back in time) I would do some more digging, get some more opinions before removing the gall bladder. I had mine taken out about a year and a half ago and now that I've recently found out (or at least am under the impression) that I have a Gluten Intolerance, I'm not sure the surgery was really necessary. On top of that my recovery was long and...umm not comfortable. I don't mean from the actual surgery, I went home the same day so I was fine with that part. It was for the next 3 months when almost everything I ate literally went straight through me. It was awful . Of course, everyone's reaction to this surgery is different - I kept going back to the doctors after surgery because I was sure something else was wrong and I was told a couple times that it could be a year before I was normal again...before my body was used to not having the extra bile to break down food. Ugh. I had an endoscopy afterward too but they saw nothing except acid buildup and so they prescribed an antacid (of course I had also been throwing up quite a bit so that would explain the acid...) I've been meaning to call the hospital to get my results from the biopsy taken during the endoscopy and see if they tested me for Celiacs at that time (my blood tests were negative). Maybe you could start with the endoscopy. It's a pretty simple procedure. Again this is just my opinion. I remember the doctors making the surgery sound so harmless and very easy recovery. It wasn't until after that I found out what they were leaving out. Good luck with whatever you decide. And feel free to ask me any questions!
  14. Surprise Benefits Of Going gluten-free

    mamaesq - I'm not sure where you live but I know most Olive Garden's have a Gluten Free menu and it's good stuff! I've ordered off it twice with no problem! This link should take you to the gluten-free Menu - so you can either look it up online or, if you're at the restaurant just ask the server for their Gluten Free menu. The servers I have had seem very educated about it and always ask if I need the croutons left off the salad, etc. Hope this helps!!
  15. I've been gluten-free for a week and woke up with a canker sore this morning (had accidentally ingested gluten the morning before in my breakfast - maple syrup on gluten-free Waffles ) I can't remember the last time I had a canker sore. That is the second time I've ingested gluten on accident so far and it seems my list of reactions just keeps getting longer. This is getting very frustrating