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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 FREE Celiac.com 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 Celiac.com Store.

This Place Is Wonderful
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7 posts in this topic

I just wanted to take a moment and say how much I really appreciate everyone's time in this forum. I would not have a clue how to live, how to cope, even recognize my problem if it were not for people like you. If you are reading this, then the "you" I am talking about is you. Look in the mirror if there is any confustion. :)

It has been wonderful to find this place. I was beginning to wonder if I was ill with some sort of horrible cancer that the doctors couldn't find, or some such other disasterous disease. My wife was to the point of forcing me to go to the Dr. because she was frustrated and worried at the same time with me being "sick" like 90% of the time. It got to the point that I was trying to find out some way to avoid food. If I didn't eat, I could not get sick from something I ate. The only problem with that solution is that I really don't want to die from starvation. At the same time, I didn't know what to eat because there was not rhyme nor reason to what would make me sick. It became so incredibly frustrating. I didn't want to go anywhere at all for the fear that I would be too far from a toilet. Sorry if that statement is too blunt, but, it is true.

Just finding this place has been a real Godsend. It is like, WOW! I know why I am sick!! I am not some mental case, or some hypocrondriac (sp?) or some kind of crazy knucklehead! I knew that SOMETHING was making me sick. I cannot even describe how frustrating it has been fighting with this THING that I never knew anything about. In the beginning of finding out just what was wrong with me, the Dr. never mentioned Celiac. I am not sure that it is Celiac, may be wheat gluten intolerance. I am going to order the tests from EnteroLab to find out for sure. It was really hard to convey to people around me how sick I was. Some I know thought I was just a baby. 'Get over it' is what I imagined they were saying. 'Get away from me, act like a MAN,' All of those things went thru my mind. I didn't want to go anywhere and do anything with the guys from Church or anything because I always had to worry about being sick, and running to the bathroom 50 million times an hour.

One final thing, I had it in my mind that Celiac was more of a woman's disease. I don't mean any putdown whatsoever by saying that, so please don't take it that way. I have suffered massive headaches my entire life. Some of my earliest memories from being 5, 6, 9, etc. are MASSIVE headaches that I now know are migraines. Most reasearch shows that more women suffer migraine headaches than men do. It is really a pleasure to see men here, from teenagers to how ever old they are. Because now I can see that this is not a womans ailment. You see all the TV commercials about Zelnorm, IBS with constipation, only the Zelnorm is only for women.

Thanks again for this forum. Sorry if I have droned on and on, it has just been great to find this place!

Glen

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hypocrondriac (sp?)

Hypochondriac.......close....just the "h"...I wouldn't have said anything, but I had that as a spelling word in fifth grade...only two years ago, or 2 and a half, so I still remember...lol. :P

Whenever I see those Zelnorm ads, I always think about celiac disease....since it's always misdiagnosed as IBS, etc. In addition, I don't take your comment about it seeming more prevalent in women offensively....based upon the migraine symptom, it would seem that way. Thank you for your thank yous :) . I concur...this is a terrific board........ :D:D

-celiac3270

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Hi Glen! We are glad you found this place too. Scott has done a wonderful thing by creating this website and message board *clapping for Scott*!!!!

I love this board and do not think I would have made it this far without it. THe people here are wonderful, they share and support one another. I know for sure I would not have been dx as early as I was because my GI doc thought it was IBS too but I knew it was something more than that, at one point (after losing 40lbs in 2 motnhs) I thought it could be cancer or something, very scary stuff!!!

Anyway, we are glad you are here and receiving support and information! After all we are all in this together :D !!!

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Just finding this place has been a real Godsend.
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:) I also agree with Glen... Thank goodness for this forum. I have shared so much information with my doctor which he is very greatful for.

Glen, I know exactly what you are talking about, can't go anywhere without knowing where a bathroom is, not wanting to eat anything for fear of getting sick. I do believe people were sick and tired or hearing how bad my stomach felt... until that first fateful day when I had a horrible reaction at work, then I think people started to think I wasn't being a baby, and just complaining all the time.

For everyone, Thank You, Thank You, Thank You. I have found so much useful, helpful and encouraging information here, I don't know what I would've done.

Linda :P:P:P

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Hi Glen,

I know exactly how you feel. I too feel blessed that I have found this site as I now know that there are others out there who are dealing with exactly what I am dealing with and I am not alone. I have read so many posts here that I could swear I was reading about my own life!!!! I have had flare ups that I swear I would not be alive six months from then, sure I was dying of cancer. I eventually live through them and now try to tell myself each time, "Okay Karen, we have gone through this before, this too will pass......" There are also so many people who's health mirrors my own here also, i.e. dealing with Celiac Disease, hypothyroidism, chronic anemia, fatigue, depression, just to name a few! The times when I feel I can't cope anymore (which for me is very difficult, I have four young children, including 3 yr old twins, that need my attention.....), I just have to remember the people here and the support that I receive here, even though I am a newbie, everyone makes you feel welcome here......

I am also learning so much here, it is so informative and helpful advice how to know where the gluten is hidden......

Best wishes,

Karen

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You're definitely not the only "man" on this board! I had the IBS dx for so many years, I also had to "suck it up" and deal with it. My wife seemed to get so irritated when I was too sick to go somewhere, like I was intentionally ruining her fun by being ill. Never mind that I was not only also missing out on the fun myself, but also writhing in pain. People really have no sympathy at all, do they? Now when my wife gets the least bit sick she expects me to pour on the sympathy and understanding, but I tell you that's hard for me to do. I'm a pretty generous person, but even so, I just want to say, "Now you have a tiny taste of what I have put up with 24/7 for the last 20 years!" It's like the world shuts down when she gets ill, but when I'm sick it's just because I'm trying to mess up her fun. Now that I'm gluten-free, she "tries" to be supportive, but she still complains endlessly about how the gluten-free food tastes, how expensive it is, how I'm still not 100% better yet... <_< I guess it's human nature to not understand what we don't personally experience. Ah, well. Really she's not all bad, that's just my little rant.

I agree that it has been wonderful to find this forum, and I am very grateful for it. Whenever I have had to suffer an affliction of some sort, from Bell's Palsey to Celiac Sprue, it has been an online forum that I've looked for to find the answers that doctors couldn't give me. Rarely have I found one as active, friendly, and helpful as this one.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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