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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

How To Overcome The 2Nd Wave Of Denial...
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I'm sure this is something everyone struggles with at some point - you're absolutely gluten free, you're feeling great, and thinking to yourself - maybe it was just some lucky fluke? How is it possible that I can feel so well now, and eating a crumb of gluten makes me so sick?

I think this is the longest stretch I've ever been without accidentally really zapping myself with gluten. I'm still getting very occasional mild DH, but no stomach symptoms, and I'm really feeling great!

With blood tests and biopsy not confirming anything (and for personal reasons I don't want to do the Enterolab tests), I have nothing but my dietary response to confirm gluten intolerance. I can't start testing myself with gluten every time I start losing faith, how do I keep on the straight and narrow? :D

So in other words, I don't have my paper confirmation I have celiac disease, but my body says I do. My mind is thinking, no way! My tongue is thinking, "Hey let's try some muffins and deal with the consequences later!".

Bleh, let me go get a gluten-free chocolate, that will cheer me up!

So my question - what do you guys say or do to re-assure yourself that you are gluten-intolerant, short of hitting yourself with gluten again in a challenge?

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I would think a diary of your daily diet and symptoms (pre and post gluten-free) would do it. Then when you start doubting yourself again you could read how much better you are doing now.

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I remember the nights I would be in too much pain to fall asleep, manage to only sleep for maybe an hour, then wake up and never get back to sleep. I remember the bloating, all the other problems I had which I'm sure everyone who's had the same issues can guess. My good friend, who is also a naturalpath is the one who diagnosed me. She also has celiacs, and when I told her what was going on, she gave me a list of things I should be eating. I followed it for two weeks. I was sleeping again for the first time in years, there was no abdominal swelling, I wasn't in any pain. I told her this, and she asked me a few more questions about my family (my mother's father's side all had stomach/intestinal issues), and suggested I continue to follow at gluten free diet, and diagnosed me. Running into things I didn't realize had wheat, like certain sauces that have sent me through a relapse, if you will, have reminded me that there's no way I should ever go back to wheat/gluten, clearly I was doing a lot of damage to my body. Even if you don't feel the pain, there's still damage being done. Be really careful. It's tempting to fall off the wagon, so to speak, I miss the cereals I grew up with, but nothing is worth the pain I went through. Not even Cinnamon Toast Crunch, which was my favourite.

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I haven't been lucky enough to be symptom free long enough to doubt it. I am just too sensitive. Things are getting better though. I'd just think back over all those gluten reactions that you had previously and stop doubting yourself.

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I remember the days of borderline anemia, canker sores, chronic fatigue, and running for the toilet with D all the time. All of that is gone now. That's enough to keep me on the straight and narrow.

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I can eat dairy now. I don't have daily headaches, bloating or alternating C/D anymore. My skin is a lot clearer and I'm not getting weird mouth sores. I don't have strange food cravings or hunger pangs every 90 minutes, and I'm not waking up in the middle of the night dreaming of food. I'm not exhausted, sluggish and fuzzy-headed all the time. A year ago, none of that was true. I keep reminding myself how awful I felt just a year ago and how limited my diet was becoming thanks to the gut damage...and how much I've obviously healed since then. That's enough for me to keep on the diet.

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I have gone through my 5th or 6th stage of denial. There are times that I still think... "it won't hurt me..." I've been gluten-free for 6 years now, with only an occasional accidental gluten intake. Those few times have reminded me why I don't want to eat it. I spent too many years of my life feeling like crap and not knowing why, or thinking it was normal. Not any more. Be strong. Your body will thank you. Good luck.

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oh i totally understand denial and going back and forth on gluten... and wanting a diagnosis to motivate myself..

but if you really have DH- then that's more than enough proof to knock u out of denial- only Celiacs have DH.

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I been gluten free almost two months, and heck I have had a couple denial times. (Though I swear my husband has had more). But considering I have been sick non-stop for a year and a half before going gluten free, and before that I always had skin problems too, I just have to stop for one second and think.

"Hey Karen, (That's my real name, I didn't want to advertise it on the forum, but I am feeling a little more comfortable now.) don't eat that! NO! Don't do it! Do you remember how you felt before when you ate all that junk? Constantly down with stomach issues, or getting sick so easily. And look, your skin problems are gone. You don't spend so much time itching your scalp or with red legs and arms and just about everywhere you can think of. Yes you still have dry skin, but now you can actually stand to put lotion on. And as for your health in general, you have lost almost all the weight you gained in the past year. You have more energy. You love cooking again. So don't ruin it, you really are better."

Mostly my doubt comes in the form of, "Really? I can't eat that because wheat flour was in the air when it was made?" But my sickness is testament that cross contamination is a huge issue for me.

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Thanks for all the responses! You guys really encouraged me :)

I do have a diary pre-gluten-free, and it's so funny seeing all the "Oh my word, I feel so sick after eating xyz, I think it might be xyz..." entries, where "xyz" is the latest food I suspected might be killing me.

It was always the toppings *on* the pizza/pasta/roll/sandwich, not the wheat itself ;)

Was really feeling down yesterday, after my mom phoned me to say she had made my "gluten-free" christmas cake. I gave her a recipe and approved all ingredients carefully. And then she mentioned she "just" added some brandy, and a bit of orange juice, and some glazed cherries.... "And it's so delicious!". Thanks mom, but I probably can't eat it now.... Crossing fingers that I don't react to brandy or the cherries :(

I often get the feeling - if it's delicious, I can't eat it. Sometimes I stumble on an awesome gluten-free recipe that I can tolerate, but generally delicious, spice-heavy, tasty food upsets my stomach. Hopefully with healing it'll get better.

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It was always the toppings *on* the pizza/pasta/roll/sandwich, not the wheat itself ;)

Hehe, before finally nailing it down I thought the cheese on a pizza was making me sick (even though cheese by itself wouldn't), well no maybe it was the tomato sauce (even though tomatoes by themselves didn't cause problems). Well what about the problems I'm getting from peanut butter sandwiches? Obviously it's a peanut issue (even though honey on toast caused same problems). Oh great now I'm seeming to notice that brownies are also causing this very same issue I'm getting from the cheese/tomatoes on the pizza and the peanut butter on the sandwiches, must be an additional problem with chocolate. Finally ran out of additional ingredients to blame it on while I had started keeping a food journal and finally saw the thing they all had in common.

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Hehe, before finally nailing it down I thought the cheese on a pizza was making me sick (even though cheese by itself wouldn't), well no maybe it was the tomato sauce (even though tomatoes by themselves didn't cause problems). Well what about the problems I'm getting from peanut butter sandwiches? Obviously it's a peanut issue (even though honey on toast caused same problems). Oh great now I'm seeming to notice that brownies are also causing this very same issue I'm getting from the cheese/tomatoes on the pizza and the peanut butter on the sandwiches, must be an additional problem with chocolate. Finally ran out of additional ingredients to blame it on while I had started keeping a food journal and finally saw the thing they all had in common.

This was me, totally! lol....Since I did know people who couldn't eat dairy, or tomatoes, or chocolate, or nuts -- so definitely one of those HAD to be the problem. Right? :lol: um.. yeah. :rolleyes:

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Hehe, before finally nailing it down I thought the cheese on a pizza was making me sick (even though cheese by itself wouldn't), well no maybe it was the tomato sauce (even though tomatoes by themselves didn't cause problems). Well what about the problems I'm getting from peanut butter sandwiches? Obviously it's a peanut issue (even though honey on toast caused same problems). Oh great now I'm seeming to notice that brownies are also causing this very same issue I'm getting from the cheese/tomatoes on the pizza and the peanut butter on the sandwiches, must be an additional problem with chocolate. Finally ran out of additional ingredients to blame it on while I had started keeping a food journal and finally saw the thing they all had in common.

OMG me too! It must be the alfredo sauce. It's too rich. OK, marinara sauce is too tomato-y. Nevermind that I don't react to tomatoes. I'll just order some of the wonderful grilled meats at Italian restaurants and skip the pasta. Whole wheat cereals have too much fiber for me to tolerate and pastry and burgers are clearly too rich or perhaps the burger was undercooked (never suspected the bun). Funny, I don't have problems with rich food now. ;)

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Was really feeling down yesterday, after my mom phoned me to say she had made my "gluten-free" christmas cake. I gave her a recipe and approved all ingredients carefully. And then she mentioned she "just" added some brandy, and a bit of orange juice, and some glazed cherries.... "And it's so delicious!". Thanks mom, but I probably can't eat it now.... Crossing fingers that I don't react to brandy or the cherries :(

Brandy is gluten-free and it would be unusual to find it in cherries.

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OMG me too! It must be the alfredo sauce. It's too rich. OK, marinara sauce is too tomato-y. Nevermind that I don't react to tomatoes. I'll just order some of the wonderful grilled meats at Italian restaurants and skip the pasta. Whole wheat cereals have too much fiber for me to tolerate and pastry and burgers are clearly too rich or perhaps the burger was undercooked (never suspected the bun). Funny, I don't have problems with rich food now. ;)

Haha- yep!

I was sure I was intolerant of peppers. Never mind that when I made something naturally gluten-free with peppers in it, I had no problems. I usually ate peppers on pizza or pasta, so it must have been the peppers. And my lactose intolerance was just getting worse with age. That happens, right? Lactaid pills don't work for everyone, right? And lots of people have trouble digesting cabbage and broccoli when they get older (never mind that I was only 31 and it was sudden onset). Oh, everyone gets headaches every day after lunch. Migraines are really common, right?

It was amazing how many justifications I was willing to make to overlook gluten.

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I'm sure this is something everyone struggles with at some point - you're absolutely gluten free, you're feeling great, and thinking to yourself - maybe it was just some lucky fluke? How is it possible that I can feel so well now, and eating a crumb of gluten makes me so sick?

I think this is the longest stretch I've ever been without accidentally really zapping myself with gluten. I'm still getting very occasional mild DH, but no stomach symptoms, and I'm really feeling great!

With blood tests and biopsy not confirming anything (and for personal reasons I don't want to do the Enterolab tests), I have nothing but my dietary response to confirm gluten intolerance. I can't start testing myself with gluten every time I start losing faith, how do I keep on the straight and narrow? :D

So in other words, I don't have my paper confirmation I have celiac disease, but my body says I do. My mind is thinking, no way! My tongue is thinking, "Hey let's try some muffins and deal with the consequences later!".

Bleh, let me go get a gluten-free chocolate, that will cheer me up!

So my question - what do you guys say or do to re-assure yourself that you are gluten-intolerant, short of hitting yourself with gluten again in a challenge?

Were you gluten-free when you had the tests that were negative? That could cause it. I was newly diagnosed in June and my GI said that she thought that I had it for decades. Right now I'm concerned about the damage that may have already been done to my organs. The vilii in my duodenal is nonexistent. If you're feeling better without eating gluten than follow what your body is telling you. I also agree with keeping a food diary. And remember, we're all in this together and are here to support those muffin cravings!

Loey

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I do have a diary pre-gluten-free, and it's so funny seeing all the "Oh my word, I feel so sick after eating xyz, I think it might be xyz..." entries, where "xyz" is the latest food I suspected might be killing me.

yep - me too :) funny, i did actually cut out pre-packaged foods almost first of all. (plus, they're overpriced and pretty tasteless) and eventually my cooking became all fresh/basic ingredients, fresh herbs, etc. the only huge mistake i was still making was including the gluten. it made switching to gluten-free a whole lot easier. still missing my pizza. udi's bread saved me :) and redbridge lol :D

hang in there!! my sister came for a visit and told me how much better and healthier i looked from the last time she had seen me (and was worried sick about how terrible i looked!!) pre gluten free. i can't see my improvements myself by looking in the mirror each day, but she could definitely tell - this is the real deal!!

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