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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.

Falling Off The Gluten-Free Wagon
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I feel your pain. This is week 3 for me gluten free and I get so tempted to cheat. At first I was terrified of going gluten free, but once I did some research, its gotten easier and less expensive.

Here's a few things I've found to be quick and easy meals:

For breakfast: Chex with mixed nuts and dried fruit (easy on the go), cream of buckwheat, or yogurt and fruit smoothie

Snacks: flavored rice cake with peanut butter, apples and cheese, carrots with hummus

Lunch: grilled sausage with grilled veggies, meat and cheese wrapped in corn tortillas

For dinner: grilled fish or chicken and rice or potatoes.

I've had the hardest time with bread. UDI is pretty good gluten free bread. Its a little dry but tastes so much better when toasted or used for paninis. I also ordered some almond flour online and I'm experimenting baking my own breads.

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I feel your pain. This is week 3 for me gluten free and I get so tempted to cheat. At first I was terrified of going gluten free, but once I did some research, its gotten easier and less expensive.

Here's a few things I've found to be quick and easy meals:

For breakfast: Chex with mixed nuts and dried fruit (easy on the go), cream of buckwheat, or yogurt and fruit smoothie

Snacks: flavored rice cake with peanut butter, apples and cheese, carrots with hummus

Lunch: grilled sausage with grilled veggies, meat and cheese wrapped in corn tortillas

For dinner: grilled fish or chicken and rice or potatoes.

Just going to caution you: I know myself and others on the board have had CC reactions to Chex, and many dried fruits are processed in places that process wheat. And Lundberg is one of the few rice cakes I haven't had CC (or more severe) reactions to, especially when it comes to flavored. And, as I learned the hard way, watch out for the fillers in many brands of sausage--they often contain wheat.

(Not saying that these aren't all good ideas, just be careful.)

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:rolleyes:That first week or two for me was spent in a panic state. I was panicked over what I couldn't eat. I am only in week 6 but have already made some realizations. I really had to try to spend time thinking about WHY this was such a big problem for me, after all it's only food right?!

For each of us food has different meanings. For some people food is used (as it should be) to keep them alive, without it they would die for obvious reasons. That being said gluten free living could be easy. For most people, me included, food is joy. Food is used to show love, to feel love. Most of us gather around some form of a community table (even in the most remote regions of the world). Humans have for the most part lost prespective on the fact that we just need to feed ourselves for energy, and made food almost worthy of Godly status. Take a few minutes today to realize this when you watch television, read a magazine, or drive by a billboard. I am trying to learn to put less emphasis on what I can't eat, and more emphasis on other things in my life that I CAN do. Once you start to realize how powerless food is over you, I think things become easier.

I have actually developed a taste aversion to some foods that contain gluten. Sort of like the first time you indulged in too much alcohol and got ill (its been 28 years since I drank that Southern Comfort and darn it I still shudder at the thought). Glutenous (is there such a spelling) foods have actually become that for me. I don't want to be sick, and so the illness outweighs the comfort of the food (that inanimate object that has no control over you!).

You can do this Kare. Use all of the info you get here, even the stuff that you find hurtful to help you rise above this. We are fortunate to have such an opportunity to even be able to read this!Its difficult, but do-able for sure! Everyone be well! Peace to all!

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:rolleyes:That first week or two for me was spent in a panic state. I was panicked over what I couldn't eat. I am only in week 6 but have already made some realizations. I really had to try to spend time thinking about WHY this was such a big problem for me, after all it's only food right?!

For each of us food has different meanings. For some people food is used (as it should be) to keep them alive, without it they would die for obvious reasons. That being said gluten free living could be easy. For most people, me included, food is joy. Food is used to show love, to feel love. Most of us gather around some form of a community table (even in the most remote regions of the world). Humans have for the most part lost prespective on the fact that we just need to feed ourselves for energy, and made food almost worthy of Godly status. Take a few minutes today to realize this when you watch television, read a magazine, or drive by a billboard. I am trying to learn to put less emphasis on what I can't eat, and more emphasis on other things in my life that I CAN do. Once you start to realize how powerless food is over you, I think things become easier.

I have actually developed a taste aversion to some foods that contain gluten. Sort of like the first time you indulged in too much alcohol and got ill (its been 28 years since I drank that Southern Comfort and darn it I still shudder at the thought). Glutenous (is there such a spelling) foods have actually become that for me. I don't want to be sick, and so the illness outweighs the comfort of the food (that inanimate object that has no control over you!).

You can do this Kare. Use all of the info you get here, even the stuff that you find hurtful to help you rise above this. We are fortunate to have such an opportunity to even be able to read this!Its difficult, but do-able for sure! Everyone be well! Peace to all!

More good advice and kind support....All of you supportive, helpful people who've commented on this subject have really meant a lot to me. I think I've gained strength, and a new way of looking at things. Not that it's always going to be easy, but I think it will get easier and easier. My sincere appreciation to all!:)

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You are not alone. I think about eating the wrong foods ALL THE TIME. I have a young child, and I end up at some pot luck function (where everyone brings a dish or food) at least once a week. I just watch (starving) and politely say "I'm not hungry". It's truly awful, but it's so much worse to be sick. I broke down last week after 4 strict months of being gluten free. I kept watching all those kids eat all that junk, and we had to take some home. After everyone went to bed, I got out the bag of sunchips and ate 4 of them. Immediately, I was overwhelmed with panic wondering what would happen. I ended up hugging the toilet from both ends all night long. I will never do that again- NEVER. For each one of us, it is a struggle depending where you are on your journey. I'm sorry you are discouraged. I hope you get some help and support. For me, I still miss the food even though I know what it does to me. Eventually, I will come to terms with it. We all have to.

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Been gluten free for a year now, flawlessly. It was hard at first, I hesitated at putting ANYTHING in my mouth. You'll start to get more adventurous and creative in your cooking. Are rice cakes available to you? They saved me through the first few months. Rice cakes with peanut butter, tuna, goat cheese, cucumber, whatever else you can think of...

Yet recently I have been so close, much too close, to eating a McChicken from McDonald's. The only thing stopping me is that I know I will be so sick and it's just not worth it. I'm sure every Celiac has thought about cheating, whether or not we actually do it is a different story.

A note on the rice crispies: you said you weren't sure about them, but the killer ingredient is MALT. This is a source of gluten that I didn't know about at the start of my gluten-free adventure. IT WILL GET EASIER, I promise, but it probably will never be easy to watch other people eat yummy and convenient things while we cannot. We just have to eat our own yummy things and figure out new favorites!. My favorite saying is:

Never concentrate on what you CAN'T eat, only think of the many things you CAN eat.

It will get better! :)

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Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

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Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

I have an amazing sugar cookie recipe if you want it. I may have posted it here around Christmas time, but if you can't find it email me at d.hoholuk@hotmail.com!

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I have been gluten-free about 5 weeks. The first few days I tried some of the gluten-free products like Udis bread, pasta & pizza crust. Hated them! It was too close to when I had the "real" versions. This past week tried them again & liked them. Wasn't as easy to compare them in my taste memory. Some are better then others & I have found that its sometimes personal preferences. Still don't like Quinoa pasta but did like rice pasta.

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Eating gluten-free is a choice. If a bowl of cereal is worth feeling as you do, then how can any of us change your mind?

I must say at first glance the comment seems a bit lacking in the compassion area.

However it is really hard to know how someone's tone is intended with typed words.

I don't think they intended to discourage or to be hurtful.

For me I was sad when my diagnosis came about.

BUT I know that I can choose to live a better life doing it gluten free or I can be in pain and uncomfortable all the time.

Celiac disease has put a damper on my relationship with my husband 5+ years before diagnosis. When the bathroom is the first thing you visit in the morning and the last thing in the evening it kinda kills the romance.

It looks to me the person who "feel off the wagon" felt like she had no food options available. That is an awful feeling.

This has been a great place for me to vent my gluten frustrations please feel free to continue as well we are all in the same boat.

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Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

I had gluten free snicker doodles they were soft and they were yummy. I think made by enjoy life. I found them in the bread and cookie isle of my local grocery store

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Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

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The gluten-free lifestyle isn't easy, especially when you live in a home with other people who don't have to eat the way you do. Several years ago, when I was diagnosed with Crohns, the doctor told me I could also be gluten-intolerant. I didn't pay a lot of attention to that, as I felt dealing with Crohns was hard enough. I attributed my nearly-constant digestive problems to the Crohns. I tried, briefly, to cut out the wheat, not fully understanding there was more to it. I felt it was too hard and quit trying. Fast forward to 3 years ago. My gall bladder abscessed and ruptured. The area of my liver around the gall bladder had started developing abscesses. I was extremely ill and almost died. After I got out of the hospital, even though I still didn't think about the possibility of all of that being caused by gluten intolerance, I was very careful with my diet, leaning more towards low-carb and not eating wheat or other grains. Gradually, though, I started slipping back into old habits and eating wheat-based products and having health problems that just kept getting worse.

A little over a month ago, I tested positive for gluten intolerance. I took it serious. For the first 3 weeks, I felt fantastic. Then, I started not feeling so good, again. It's hard to stick with this diet when you're feeling lousy and wanting comfort food, and you haven't developed a taste yet for new comfort foods. To make things worse, I broke a back molar and can't get into the dentist for a couple of weeks. It hurts a lot, and I'm feeling really vulnerable and wanting to call it quits -- with the gluten-free stuff and the Crohns and the diabetes (yes, that's also a result of the infection from 3 years ago). I want to give up, but I can't. I have a developmentally disabled son who needs me, and I don't want to end up sick and in the hospital like 3 years ago or dead. That's why I take my insulin every day, even though I hate needles with a passion. That's why I stay away from gluten, even though I could really go for a McDonalds fish sandwich right now.

Hang tough. Falling off the wagon hurts a lot more than staying on it.

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I completely understand that for some people one fall off the wagon leads to staying off the wagon for months/years as in going back to eating gluten-containing products permanently. Surely there are some of you out there that had a relapse, one incident where you had the donut or the carrot cake or the whatever just because you wanted it really badly and right away got back on the gluten-free bandwagon???? Or is it all doom and gloom. One mistake and that's it, back eating gluten permanently? I understand it's preferable to stay gluten-free rather than give yourself that emotional (not to mention physical) hardship.

My nan was a smoker for years. She gave up smoking when my Grandfather developed angina but once in a blue moon when her sister, a smoker visited she'd light up and have a couple. Then off them again for another few years. I always wondered at her restraint not to go back on them. Sometimes I wonder if I'd be able to do the same with gluten (not that I'm planning it or anything!!!)

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I've been gluten free for a week, and I already slipped. I love cold cereal with milk, and I miss it so much! Last night, I ate rice krispies. I'm pretty sure it's not gluten free, but I figured since it's made from rice, it wouldn't be as bad as some others. I have terrible insomnia right now, and late at night is the hardest time to stay on the diet. I don't know how I'm going to do this the rest of my life. It's especially hard because here in Saudi Arabia there's no gluten free food available, and I haven't ordered anything online yet. I'm so frustrated. Just starting to have a reaction to what I ate last night. It's been about 18 hrs, and I'm starting to have face flushing, hives, and what I think is kidney pain. I started getting it lately when I'm sick. It's so not worth it! Please help if you have any suggestions for kicking gluten for good...

Also, I've read a lot about people having problems with corn. Last night, I ate some popcorn with just salt at the movies, and I started coughing a lot. I always do, and I always thought it was just because of the husks in the popcorn, but now I'm wondering if I have a problem with corn. Any thoughts?

If you need cereal then have Fruity Pebbles or Coco Pebbles. Just bc you need to be gluten free doesn't mean you need special gluten free foods only. Think of all the really good things you like (like ice cream) and keep those in the house. You can have black beans/kidney beans with brown rice or white rice and tomatoes and cheese. The is good gluten free pasta out there that you can make with turkey meat and spaghetti sauce that taste really good. Pistachios are nice snack but watch how much you eat. I started keeping sugar free jello in the fridge and choch. dove candies. Pamela's pancake mix makes a great Gluten Free pancake. I hear what you are saying and it's hard. sometimes I just want to fold and enjoy a good old fashion cheeseburger with the bun. We went to P.F. Changes the other night and it was hard for me to turn down the fried green beans. Fajitas are also good to make for lunch and dinner. Buy a good iron skillet. Good luck!

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Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

Try making your own sugar cookies. I made some with my daughters over Christmas and they were so good. Couldn't even tell they were gluten-free. I will send the recipe today when I get home.

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Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

So sorry to hear what you've gone through, and I appreciate your sharing. Don't worry. I jumped right back on the wagon, and haven't gone off since. Don't plan to ever--even more now that I've heard your story, and another. Thanks. Take care of yourself!

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So sorry to hear what you've gone through, and I appreciate your sharing. Don't worry. I jumped right back on the wagon, and haven't gone off since. Don't plan to ever--even more now that I've heard your story, and another. Thanks. Take care of yourself!

Hang in there. You will be fine.

Good luck

Jess

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Try making your own sugar cookies. I made some with my daughters over Christmas and they were so good. Couldn't even tell they were gluten-free. I will send the recipe today when I get home.

Me too! Me too!

Please?

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Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

Hi Jess (Backtalk),

Thanks for posting your story. That's one heck of a hard lesson to learn. Hopefully others who are struggling with commitment to the gluten-free diet will get motivation from your story. There have been a number of posters who find it hard to stick to the diet for various reasons. But in the end run the reason doesn't matter, when the result is pain and suffering. I disagree about them enjoying a bag on their side though. My younger brother had a colostomy and bowel re-section years ago and he didn't enjoy it at all. Another thing people might want to do is read some of the signature lines of posters on the forum. Some of them have other autoimmune conditions brought on by celiac before they were diagnosed.

I hope you get better soon Jess!

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kare101- I just re read my reply to your post, and I must apologize. I really went after you didn't I ? For that I'm sorry. There is nothing easy about this staying gluten-free thing. I was "felony stupid" when I stopped the gluten-free diet. To show how hard staying gluten-free is, when I gave up I was not only not feeling well but I got a case Celiac Dermatitis so bad on my butt I couldn't sit. Went to the doctor to have it looked at and treated and lied my brains out telling him I was doing great with the diet. To this day I still need to use a steroid cream to keep it under control. There are so many things that you can go through and things that can happen. It's not worth back sliding even once. Damn it's hard enough for us to just find something that isn't cross contaminated. Anyway, sorry for coming down so hard on you. You WILL be fine and you will make it.Good Luck and stay Tuff.My Best, Jess

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      I never really had much heartburn before my diagnosis of Celiac and consequent dietary changes. But since then, I have discovered Udis, Van's, Canyon Bakehouse, and many other gluten-free brands. About a year ago I began eating 2 waffles every day, 7 days a week with my breakfast. The waffles I was eating were Nature's Path and Van's, both which use very high amounts of sodium acid pyrophosphate. The waffles are mostly air and carbs. Within a few weeks I began to develop recurrent, very painful heartburn that would popup constantly. My tolerance for acidic foods declined--whereas previously it would take much more acidic foods to cause heartburn, now any amount, no matter how small, would cause heartburn. And it kept getting worse with each month to the point that I began to worry about my health. I developed GERD that wouldn't go away for 24 hours after eating an offending food. The offending foods list kept growing bigger and bigger to the point that almost anything would cause heartburn and some degree of GERD. So I eliminated almost all foods containing sodium acid pyrophosphate and the heartburn and GERD stopped. I can eat tomato-based foods again with either no discomfort or 5% of the discomfort I used to experience, and I can eat foods on the offending food list again with no heartburn at all. Despite searching the internet for hours for an answer to what was causing my heartburn and GERD, I found nothing definitive and had to figure it out on my own. Did you know there is absolutely nothing at all anywhere on the internet connecting sodium acid pyrophosphate with hearburn? To my knowledge this will be the first ever post on the topic on the entire internet. Either that, or both Google and DuckDuckGo are suppressing the information. Also, did you know that sodium acid pyrophosphate is an ingredient found in almost all aluminum-free baking powder? That's what I get for trying to eliminate aluminum! I am making the switch to single-action aluminum-free baking powder soon--single-action doesn't have this ingredient, but it's less convenient to use unfortunately. I'm interested to hear if it causes anyone else heartburn as well. I'm glad to be heartburn-free and comfortable for the first time in a year.
    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Leaky gut is a condition that we have little knowledge of.  The symptoms this condition could cause are not agreed upon. Some health practitioners say it could cause "wide range of long term conditions [1], like chronic fatigue syndrome and Multiple Sclerosis. The possible cause list NHS gives is much more accurate: inflammatory bowel diseases – such as Crohn's disease infections of the intestines – such as salmonella, norovirus andgiardiasis  coeliac disease  chemotherapy medicines chronic kidney disease   radiotherapy to the abdomen (tummy) immunosuppressants (medicines that weaken the immune system) HIV/AIDS  cystic fibrosis   type 1 diabetes sepsis complicated surgery As you can see, the list includes a lot gastrointestinal conditions. Gut becomes "leaky", letting too big particles into blood system, and possibly these particles act as poison (because they are not  supposed to be in the blood, thus the possible bad effects). Now, to confirm this disease, I was amazed that this test hadn't been done before:
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    • So Hershey's Miniatures Aren't Gluten Free?
      I am really ill just now - 20 minutes after eating 2 Hersheys Milk Chocolate Miniatures - checked on the Hersheys site and the milk choc. minis are NOT included on their list of gluten-free products -and no, I am not sensitive to dairy, so that's not it.  NO MORE for me... it is not the "end to a perfect day" but it isn't fun.
    • Candida test
      I noticed after I posted this that there are some topics about this posted before.  There is a search function above.  But, if anyone has anything new to post that would be appreciated.
    • Negative tests, possible celiac?
      I had a celiac blood test around may 2015. I'm 20, male. AGA  -        35       range 0-20 TTG IgA -     5      range 0-20 I believe total IgA was normal. I have been gluten free, avoiding gluten best I could for about  2 weeks before this. On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand. I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage?   Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so.   Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms.  Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice.   I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore. Any opinions/ similar experiences would be appreciated.  
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