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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

This Place Is Wonderful

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!



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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 :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



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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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:) 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,



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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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    • turkey
      Turkey is gluten-free as long as it is not stuffed. You can make a good gluten-free stuffing using gluten-free bread. Dry the bread first and add what ever spices or veggies you wish, but cook it in a separate baking dish because stuffing the bird with it can cause bacteria to breed. And gravy must be thickened with corn starch or potato starch instead of wheat flour.
    • turkey
      so you can't even cook without stuffing inside turkey and not get gluten? Sorry I'm not familiar with turkey and wondering if I can have it while rest of family gets stuffing? In other words is turkey gluten free?
    • Numbness, Tingling in limbs & Joint Aches
      Hi Ender, Although you didn't get a complete thyroid panel, from what I see you are hypothyroid.  Most Dr's only care about TSH and yes yours is in the range, but when mine is that high I get terrible joint aches.  I feel best with mine around 1.  Your free T4 isn't just a tad low...most people feel best with it around 50% of the range.  I think you could benefit from some thyroid replacement medication.  You should also get a full thyroid addition to what you've had done a free T3, TPOAB and TgAb.   The last 2 are antibody tests.  Hashimotos is found fairly frequently with celiac.   Low vitamin D can also cause aches.  It would be really good to have your levels checked again.  Until you are healed you may not absorb it well enough so it's good to keep supplementing.  It took me a year and a half gluten free to get mine to an acceptable level for my Dr and he's keeping me on 2000 daily for maintenence.  For the numbness and tingling my Dr had me add magnesium as I was having horrible tingling in my feet and my B12 was good.  I have to say it has helped a lot. I hope you are able to get this figured out...I would definitely start with a complete thyroid panel and recheck of Vitamin D.  Here's a bit of reading on thyroid stuff if you have time.  Hugs!
    • Positive & Increasing TTG -- questions re: testing & history
      I'm a 31-year-old high school teacher (currently on disability) who has been dealing with 4 years of major gastrointestinal problems, which resulted in major surgery for a rectal prolapse & redundant colon last August, prior to which I had lost about 20 pounds. The source of all my gas, bloating, distention & diarrhea has remained basically unexplained though ("lets trust the surgery resolves your obstructed defecation and in turn your gas... d'oh it made both  worse"  ) , and my symptoms have only gotten significantly more severe since surgery. I'm facing a permanent ostomy. I've also, for the first time in a lonnng time, been eating a lot of gluten every day... primarily out of depression and (misguided?) attempts to gain weight and keep stool soft. I've been typically slightly underweight for 10+ years. Suffered anorexia for a period 10 years ago, and since recovering have "naturally" maintained a low weight and low-wheat lifestyle (I've always been put off by heavy wheat items like bread, sandwiches & pasta, *shrug*). As a child I had crazy severe & unexplained constipation issues. I've also had strong teeth discoloration & marked enamel defects (& two missing adult teeth(?)) since childhood. Depression & anxiety have been longterm issues. I have osteoperosis, which was perviously explained by me being anorexic from 19-22. Everything changed 4 years ago upon the onset of all my (severe) classic-IBS symptoms (gas/bloat/d+c). On a low-gluten diet, TTG bloodwork came back "low-positive" repeatedly. A biopsy showed no damage, but my gluten intake at the time was limited to 2 cookies a day, or occasionally 2 cookies and a piece of pizza. Would this have been enough to show damage? I trialled going gluten-free for a few months, and didn't find a ton of relief... so assumed I was just FODMAP intolerant... however I was eating lots of oats and lactose that whole time, which I have subsequently identified as major triggers... not to mention just lots of gluten-free junk food. Wheat was obviously a significant gas trigger since this hit, but that seems typical for gut illness in general. Since my major surgery and the continuation and worsening of symptoms, I've connected with an internist who has again and again pushed me towards eating wheat as a method towards weight gain and healthy non-anxious eating. I also found that a high-wheat diet would provide the proper consistency (i.e. very loose diarrhea every day) to allow colorectal function (the surgery I had went very poorly and caused major obstructed defecation). I have not had success gaining weight, and have found my digestive system feeling assaulted like never before 24/7 by bloating, gas and discomfort, despite a relatively low-residue diet and constant elimination. My appetite has never ever been worse. I just had a fourth TTG test, and after this high-gluten diet I am now testing POSITIVE as opposed to BORDERLINE. Questions: 1) I suspect my first biopsy's gluten challenge wasn't quite heavy enough in terms of gluten content (couple cookies a day). Thoughts? 2) Could being underweight alone cause an elevated TTG? How about simply having colorectal surgery? "IBS" or the supposedly non-pathogenic gut bacteria blastocystis hominis which I've been diagnosed with? I haven't been diagnosed with any other autoimmune condition, and I'm so confused. So far everyones just shoving the TTG off on IBS/anorexia, which doesn't make sense to me at all. 3) I really don't know what to do right now. I'm 20 pounds underweight, in digestive hell, with most of my medical support still suspecting I'm merely acting anorexic. I most assuredly am not. They want to put me on a tube. I would really like to get off the gluten in order to ease my system and gain weight, as I'm clearly reacting to it and have been deluding myself for the past year trying to recover from this surgery, but I'd also *REALLY* like some diagnostic confirmation so my doctors & family all stop looking at me like I'm crazy, and that so I can act with appropriate caution/freedom in my dietary future. 4) Do my childhood experiences line up with any celiac sufferers? I've heard about enamel defects, but missing teeth or crazy constipation? Obviously osteoperosis could connect, and doesn't *really* line up with my anorexia considering I was already fully grown. 5) Is there any way to get EMA/HLA blood tests done in Canada (BC)??? It's really frustrating that my only chance for any confirmation is waiting months and months here for another biopsy, especially considering how dire the need to improve my digestion is ASAP. I imagine if I could get an EMA test & it came back positive I would just take that as my confirmation and be able to move on with confidence here. 6) Is it common for celiac sufferers to find themselves reacting to FODMAPS and/or histamines in foods while they're  still maintaining a gluten-filled diet? Gluten definitely isn't my *only* trigger right now, and that's probably a primary reason I haven't been led to eliminate it at. Sorry for all the talk & questions, but I'm in an incredibly challenging place right now, my head is just swimming and swimming, and any thoughts would be greatly appreciated!   Bloodwork Current, after six months of a heavy-gluten diet = Tissue Transglutaminase Ab IgA ---18.0 ---- <12.0 U/mL = normal
      POSITIVE -Probable celiac disease but this should be confirmed with a small bowel biopsy. [Tested by a multiplex flow immunoassay
      (BioPlex) method.] 

      6 months ago = Tissue Transglutaminase Ab IgA ---13.0 ---- <12.0 U/mL = normal
      BORDERLINE - Borderline anti-tTG. Suggest repeat if clinically indicated.Consider the possibility of celiac disease - a small bowel biopsy may be required. [Tested by a multiplex flow immunoassay
      (BioPlex) method.]

      2012, prior to negative biopsy = Tissue Transglutaminase Ab IgA ---24.0 ---- <20.0 RU/mL = normal
      Weak positive anti-TTG. Consider the possibility of celiac disease - a small bowel biopsy may be required.  
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