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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


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About Tina76

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  1. Thanks everyone for the advice, I checked out the blog and it was so informative! I've definiately not been that careful and will have to be once I get back on gluten-free. As advised, I've had the blood test ordered and scheduled it for early July to get enough gluten back in me in the meantime. Since I've never been 100% off Gluten and I was only "mostly" off of it for two weeks, i hope that I still have plenty in there to show up by then. The thing is, I think I take a long time to truly get miserable from it. The joint pain is definitely at its worst again, and the constipation is back. I am constantly bloated and retaining water again. BUT, (gladly in a way) I don't have any of the brain fog I had before and I was kind of hoping I would have a definite sign from my first few pieces of bread like stomach pain, but nothing like that. I have so many symptoms, but really none of the classic ones like stomach cramps and diarrhea. So once again I am doubting that I even have this ...yet I am so hoping that this is the cause of my joint pains because I will gladly give up gluten forever if it fixes that problem. As for the test, i fear that it's not the correct one either. He ordered Gliandin AB IGA. I looked it up and can't really tell if that's the correct one or not, or if it's only one of the ones needed? I figured if it's not correct I can always have the rest done later, but I hope that that test is at least a good clue? Tina
  2. Ahh so I WAS kidding myself, I had a feeling Well, I guess that could also be a good thing, because I am actually seeing my family doctor on Tuesday and will ask for the blood test. So I have been "mostly" gluten-free for about two weeks now, and getting an appt for lab tests usually takes a couple of weeks. So 2 weeks of little gluten and the next two weeks of full gluten again, that should give me an accurate result right? And can a family doctor run these tests, or do I have to see a gastro doctor? Has anyone had problems with doctors just flat out refusing to order them? I want to be as prepared as possible because the last time I told him about my joint pains and incredible itching, he just said "hmm, that's odd". He looked clueless, whereas I was already suspecting Gluten back then but didn't say anything. I don't want him to run a whole lot of other tests first, I want to start here and rule this out. Or preferably actually get diagnosed with this because it's the only condition that explains my symptoms that does not require heavy medication...
  3. Hi! I have started eating gluten-free almost two weeks ago, and only feel marginally better, if at all. I don't seem to go to the bathroom as often and my constant dull headache is gone, but the joint pains are nowhere near where I hoped they would be by now. One day I felt TONS better, I could actually get up without much pain, and I thought I was onto something, next day it was back to feeling 80 yrs old. I have definitely not eaten anything that contains gluten (reading labels, making sure nothing is even processed on shared equip) but I will admit I felt funny about going as far as having my own condiment jars or butter containers, so I still used those and tried to just stay away from the areas where i saw crumbs. I know, that's probably dumb and completely counterproductive, but I guess I thought that cutting out 99% of gluten would at least show major improvement? I have also not really looked at where I am making my sandwich (Udi's)and instead of wiping down the counter after my husband used it, again just tried to find a spot that looked crumb free. I know it's dumb, but without knowing for sure if I have gluten intolerance, I feel weird being so "picky" about everything and asking everyone to not use my jars and such, even though I know they wouldn't even mind. I guess I'm afraid of finding out gluten wasn't the issue afterall and then everyone did all this stuff for nothing. Long story short, I'm not really getting anywhere like this right? Maybe I should eat nothing but watermelon for a week to see if it gets better. I find cross contamination so difficult, it's like wheat is everywhere once you're aware of it. Might be easier to just go over the top with it for a while and stay a mile away from it... I guess my question is, is cross contamination bad enough to still cause ALL of the intolerance symptoms? Maybe I am underestimating this.. Tina
  4. What wonderful people you all are. Thank you so much, from the bottom of my heart, for taking so much time to tell a stranger it will be OK. You have given me back much hope that I can help him with this afterall. Yesterday I really had lost all hope. To top it off, I watched some comedian on TV who, out of all things, made fun of Tourette's and how he was waiting to see a "polite" Tourette's, someone who blurts out nice things instead. I was watching this with my husband and brother in law (who does not know) and let me tell you both my husband and I got dead silent. It was NOT funny obviously and it made me realize in an instant what other parents deal with that have children that struggle with soemthing, or even people who deal with something themselves. Anyway I just went to bed and had nightmares all night long about TS. Needless to say this morning did not start out well, as soon as I "remember' this "issue" in the morning my day gets a little gloomier. With that said, your posts made all the difference. Yes, I do have these myself, and I did not need medication, this is also something i have told myself all along, but it was nice to hear it from someone else! I was so against medication anyway, I don't think it is something I can consider. The side effects have me too scared. I like to leave medication for truly life threatening things. Again - thanks for putting things back into perspective for me and telling me your stories. It has helped so much to hear about good outcomes...and knowing that 3 days means nothing at all yet!!
  5. Yes, I am definitely still in the phase where I am shocked that my son might have a disorder. I tell myself that it's ok, there is much much worse he could have, it's "just" tics. Then I see him ticcing and I literally want to cry. It's probably pathetic on my part and my husband can deal with it much better than I can. Before i was told about Tourette's they didn't bother me so much. I figured he just has what I have, they'll go away, or he'll learn to surpress them like I did. (which I haven't really, but I can NOT do it when people are around me). Now that I have learned that this is a condition for which there no cure, but just ways to improve it, that's a tough pill to swallow for me. I feel like I have gone from this very bright son who has always been so healthy and never got anything but "he's doing perfect, mom" on his annual checkups, to a child who will have to deal with a life long disorder. His school told me that if he has that (TS), that it needs to be treated ASAP or it can get so out of control that he may need to be in special ed. I don't want to whine about it, I really don't. I am just really stressing over it and try to not let him see it. And now that I know what this is, I get so much more aggrevated by it. It's all I hear when he does the "hm" sound, it's all I can do to not leave the room because I just want to tell him to stop it already, but I know he can't. I am trying to go all natural with everything right now, haven't looked into non food things yet though, so that's a great tip. I will get him different shampoo and tooth paste. I thought I was onto something yesterday because he had such a great, calm day and barely any tics, and today he was ticcing lots and was also really on edge and yelled alot. this in turn of course gets me all worried again because I am starting at square 1 all over again. I don't know how long it takes for tics to reduce IF a food is triggering it, but this is day 3 and I have yet to notice much improvement overall. Seems to me that gluten, dairy and sugar is not the cause afterall. Or am I not giving this enough time? Would allergy testing help him, would you suggest that? I would like him to get allergy tested for all foods (the 100 food panel I read about, not just the most common 8) and seasonal allergies, but not sure if his pediatrician will order those tests if I request them for his tics? Can he even deny ordering them though? Sorry for rambling. It's been a really rough day. I know I can't rush this and finding triggers can take forever, and they may never be found. I was just hoping to at least rule out the foods since I can only fully control what he eats during the summer. I know he would never stick to a plan once back in school. He's too forgetful/absent minded for that....
  6. Thank you all so much! I just looked into the GAPS diet, phew, it looks intense...but the good thing is I have the summer to work on his diet. Much easier than trying to do it while he's in school with snacks and lunches getting traded between friends. I will look at the feingold website too. I must admit that I am a "bit" crushed because I read so much about tics being completely cured from changing the diet, and here it seems more like a great improvement while not ever being fully cured. I had a feeling I was kidding myself and that those were probably like hitting the lottery. I mean, it's one thing to cut out an offending food, that's simple enough. But when things like stress set off the tics, that's nearly impossible to cut out. You can lessen it and avoid stressful situations, but let's face it, such is life. I can keep him away from the TV at home for example...but if he's gonna have tics everytime he goes to a movie theater then...sigh..it's a little overwhelming right now to be honest. The good news is that I have tics myself (although my mom never had me seen for it, I don't think she ever thought anything of it and i was fairly good at making them subtle) and they come and go, and I even had vocal ones at least once that I can remember (the same "hm" sound my son makes). And yet I never seemed to get it really badly so that gives me hope that my son won't get worse either. They're bad enough already, I can't imagine them getting even stronger. Kids would probably just flat out point fingers then :-( But, unless I am totally kidding myself and grasping at straws, I think I have already noticed slight improvement today on day 2 of no gluten/dairy/sugar. He had to come inside for not following the rules when playing outside with his friends, and that's something that would have caused a major meltdown before, as in door slamming, screaming, crying etc. Today it caused him being upset, and constantly asking when he could go back out, but no more than that. He seemed really calm when he was watching TV, his tics in his face were a good 80% better I would say. However they were pretty bad again during dinner (it was just rice though, I don't think that could have set it off). At least I think/hope I'm on the right track, if I can reduce them by 90% and make them still be there but hardly noticeable, I would be ok with that. It'd odd that it stresses me out so much because I have known people in my life that had tics, one guy I knew would constantly swipe his hand over his face, as if to wipe something off, no less than every 5 secs. I thought ok this guy has quite the face wiping habit, but I never associated it with an actual problem, or even tics..heck, until my son's school mentioned Tourette's I never even knew that tics were a condition. So when i saw someone with tics I never thought anything of it. You'd think it would therefore not bother me now either, obviously I have them myself and I live a normal life. But i just stress when it comes to my kids, I don't want them teased... Thank you all so much. This is a great board!
  7. Hello everyone! I have just recently discovered that I am most likely gluten intolerant. Now I am wondering if my son could have Celiac or if he has food allergies. I have read some very promising things about food allergies and neurological symptoms? Specifically, I read that once parents find the offending foods and they cut those out, ADHD or hyperactivity is cured. I read the same about tics. Does anyone here have experience with this? My son has had behavioral issues at school both years now, he just finished 1st grade. the first year was horrible, the second year we changed schools and they seem to work with him much better. They are also the ones who pointed out to me that, now that he's developed a tic (both vocal and motor) that they don't think he has ADHD at all but that it's looking like Tourette's. I am absolutely terrified of putting him on meds for it. Such strong meds on a growing system...I really want to avoid that at all cost. However I need to figure something out over the summer because he's already getting teased for it :-( Yesterday I started cutting out all gluten, sugar and dairy. Is there anything else I should cut out? I bought Rice Chex for breakfast, almond milk to go with it (unsugared version), he can have rice, chicken, and vegetables for lunch and dinner ..and whatever else meats we cook but I will just have rice on the side...and all the fruit he wants in between. If anyone has any advice, I would be so grateful! If anyone has experience with this, cured their children just by cutting out food, or has advice as to whatelse to cut out, please please, speak up! Also, when should I see a difference if it's truly food related? Tina
  8. Gosh, Anna that's exactly what I had too! That's a good way to describe it, a slight stutter. I even asked my husband if he noticed that some words didn't want to come out right. Funny how you always try to find an explanation for everything? I speak German to my son so I thought it must be becasue my mouth is confused because the mouth movements are slightly different with each language. The feeling like I was going to drop any moment, yes I had that too! I was never fully dizzy like things were spinning, but I just felt "weird" walking...I felt like I had a drift to the left, although I wasn't physically walking towards the left. I guess i just felt like I was drugged, the constant dull headache, the water retention, the foggy mind..I felt like all this water retention was swelling my brain or something. It was a truly awful feeling and that was when I called the doctor and told him I thought i was losing my mind. I felt like I was a perfectly healthy person just a couple of years ago and now I had pains and issues with almost my entire body, and the symptoms just kept piling up. It started with the itching during pregnancy (thank God I didn't take the steroids my OBGYN gave me, I knew I didn't have PUPPS!) and then the joint pain (which is now so bad that I truly know what it must be like to feel very old and stiff. I have to slowly get up and take my first steps gently because my feet and hips are soooo sore)....then it kind of stalled there with just those two things on top of the ever present swelling and bloating (but I was so used to that, I didn't even consider it a symptom anymore). When the brain fog and the balance issues started, that's when I knew, something was terribly wrong. I was so glad to see all that get so much better once off the gluten, but I guess I am quick to doubt myself...I felt like I was just jumping on the "gluten bandwagon". I by now means want to offend anyone here! But that's the feeling i got from doctors too though. Like they think it's just the hip thing to say now, that one is gluten intolerant. But would I ever be happy if this truly were my only problem. I think will have the testing done... Does anyone know for how many days I should eat gluten for it to show up on the blood test? Anna - thanks for sharing your story, it is SO GREAT to hear from someone whose experience is so similar to mine. Downright therapeutic! I'm not insane afterall :-)
  9. Wow I am amazed at how many things I seem to have that I see others on this board have! I have been tired ever since my 2nd pregnancy too. Tired in a way that had me concerned, but I always contributed it to having a demanding toddler or the lack of exercise. My muscles, especially my leg muscles are so much weaker than I remember them being, I have always been a very muscular girl, and I contributed that to the partial bedrest I was on while pregnant. I have been irritable to the point where I considered antidepressants, yet I never felt depressed, just very "on edge". I even saw my doctor just a few weeks ago and cried my eyes out, telling him I just felt so off and that I honestly thought I was losing my mind. I work appeals for an insurance company and I'd find myself reading the same letter over and over again and checking it several times because I felt like I wasn't able to read my own words...I mean I was reading them, but I couldn't comprehend them. It was really scary and I thought ok I must have MS, or Parkinsons, or Lupus, or some other debilitating disease. Another strange thing I had was that I felt like I coulnd't use my muscles in a controlled way. I was by no means twitching all over the place...but I felt like I could only move too fast or move too slow. It was not noticeable to anyone else...but it was again something that I thought was just because I was tired. I have been contributing every single one of my symptoms to tiredness or stress, when deep down I knew that I wasn't really THAT stressed out to cause all these issues. What REALLY freaked me out was when I suddenly felt like my facial muscles were getting weak, that's really the only way I can describe it (thats when I thought I had MS for sure). It affected my lower lip down to my chin and while it wasn't numb or paralyzed, I felt like it was "heavier" than normal and it threw off my speech and I found myself not even wanting to talk because it was such a strange feeling to use my muscles, like they didn't quite want to respond. "Luckily" my joint pain was also at its worst at that point and I thought I would give the no gluten another try. I wasn't even focusing on my issue with my jaw muscles or my muscles in general, I was only focused on my joints and checked everyday if they were feeling better or worse...when a few days into this diet I suddenly realized that I hadn't had any trouble using my lower lip to speak anymore. I had completely forgotten about it because I wasn't constantly reminded of it as soon as I tried to say soemthing. Unfortunately I was "forced" to start gluten again because I had company one week into my diet and I had promised them lasagna, and couldn't think of a way to explain why I could eat neither the lasagna nor the bread, and I didn't want it to turn into a big discussion, so I figured well I was only one week into it... and slowly I felt the joint pains worsening and the lip thing coming back. I was also getting dizzy again. Not as much as before, but it felt like it was all SLOWLY coming back again. Definitely not a sudden, severe reaction right after I ate that lasagna. But once I kept eating the gluten again, it was more over the course of many days that I just felt like I was creeping up to that "at my worst" point again. I am now day 1 into my gluten-free diet again and not sure what to do...I don't know if I should try this for a few weeks first to see how I do to be "more convinced" that I figured out what's wrong with me, or if I should just keep eating gluten and get tested first. Sounds like I should get tested though from everything I read here! I definitely don't want this to get any worse than it is already...
  10. Hello everyone! I have the following symptoms, of which some I've had all my life, but some started with my second pregnancy: - bloating. ALWAYS - retaining water. ALWAYS - stomach aches - sometimes but this feels more like ulcers to me - gallbladder attacks every now and then, not sure if that's related - headaches. not really strong but more like a constant dull headache - itchy skin (but no rash, feels like something is crawling on me). started during pregnancy and never went away - joint pains and swelling, at times severe. started right after pregnancy - either constipated or going 10x a day (no diarrhea though). no happy medium - lately I also feel lightheaded, and my mind feels foggy, to the point where I started to worry about my sanity, it was scary! but this too seems to get better instantly when i get back on track with my eating again As far as the bloating and water retention, I've had that long as I can remember, but I always thought it's from sodium (I love my salty food). But when my aunt stayed with me for two weeks and made her Austrian food which is all dumplings, gravies, and basically everything starts with flour and butter, I felt like I was 20 lbs heavier and completely miserable by the time she left and the joint pains were unbearable, and I started suspecting it was the food but couldn't pinpoint it. I still thought it was the salt but eating less salt or even no salt never seemed to fix the problem. So I tried to cut out all carbs and felt like a new person. The joint pains did not go away completely but at least got better. Then I had skin testing done, thinking that a wheat allergy would also show gluten sensitivity, and when it didn't show that, I started eating everything again and started bloating up again. Now, to me it seems pretty clear that gluten makes me feel sick, but when I told the allergist about my symptoms he said he can run the celiac panel but he sounded sarcastic, as if to say "another one who thinks she has this" and said he is sure I dont have celiac disease because I don't have the stomach aches and diarrhea. Well, the thing is that I was positive for just about everything NON food related they tested. I am allergic to almost every grass and tree and every weed they tested. And yet, although he said I am "significantly" allergic, I don't have the classic symptoms there either. I don't sneeze, have no runny nose or itchy eyes. So it would make sense to me that I don't show the "classic" signs of Celiac either. I'm almost hoping I have this...I know it sounds crazy but I feel 80 yrs old due to the joint pain and would love to find the true source. Am i crazy to suspect gluten? Yes I do always feel better when I cut it out, but then again I would probably feel better on any diet that cuts out the junk so I'm never sure... Does anyone here have similar symptoms and no stomach pains or diarrhea? Thanks so much for any input!!! Tina