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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

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Almost three months gluten-free and DF and I've never had a KNOWN glutening, but I have had reactions to other things, like soda and probiotics. Identifying glutenings is what I hate the most.

So on Friday I made a huge mistake. I went over to my best friend's house and her parents cooked me a supposedly gluten-free, diary-free meal. I tried really hard to prevent them from doing it, but they're that type that HAS to be the Best Hosts Ever and so they made salmon cakes with gluten-free cornmeal, cake with gluten-free baking mix, and cornbread with gluten-free baking mix, and I felt like I HAD to eat it since it was special for me (and they're nurses so they're pretty familiar with what is gluten-free and what is not, so I decided to trust them). And all of was really, really good, and I actually ended up eating WAY too much--not just dinner but just tons of nuts and fruit and gluten-free hummus that I don't get at my house. When I say eating way too much, I mean that another bite would have made me literally sick. (This habit of overeating is itself a huge problem that I am gradually overcoming (and that people don't take me seriously about because it doesn't affect my weight), but not really the point I am making.)

Anyway, as you can imagine, on Saturday, I was not hungry at all. The only thing I had was a glass of oj and then a fruit salad prepared the day before. After that I had D and stayed away from all food for the rest of the day. I haven't eaten very much ever since and have continued to experience D and gas off and on ever since.

BUT, I also have some kind of virus, maybe the flu. Saturday night my throat starting hurting bad and now I am laid up with bad congestion and scratchy throat and fatigue.

So I have no idea whether my D and stomach rumbling is from a glutening on Friday or just a symptom of my virus. It really sucks, because I brought home some food from Friday and had to decide not to eat it in case this is a glutening (or maybe it was because they used margarine with whey in it--I am also sensitive to dairy). Or maybe the fruit had some bacteria on it or something? Who knows. This is frustrating, but it's my fault. Heck, it wouldn't even surprise me if my stomach is just really mad about how much I overstuffed it--even if there was no gluten involved.

I guess I am not really asking any questions, just venting, but if you guys did have any feedback I would appreciate it very much.

Thanks for reading!

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The margarine could be offending you, or possibly the corn. Corn was good for me for awhile and then whacked me. I have it occasionally now, but rotate it in my diet so it isn't a "staple" anymore. Hope you feel better soon. :)

I'm curious, have they called to see how you're doing?

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I don't THINK it was corn... I eat corn like, daily. Including yesterday. You could be right though...

They haven't, but my best friend called just to chat. I think they were quite sure that they avoided all gluten.

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I would not "assume" you were glutened, hon.

It was very nice of these people to go to great lengths to cook for you and if you trust they were careful about CC, don't assume you feel lousy from their cooking.

Of course, "avoiding all gluten" is one thing-- and I am sure they did not use any gluten ingredients, but a kitchen that normally handles gluten foods is still tricky business.

You are still healing! Digesting a lot of food you do not normally eat may be difficult for a gut still ravaged. (And yes, it could be the dairy.)

Also, you admit you are fighting a virus of some kind.

Could be many factors giving you the D and fatigue, etc. It will pass. Hope you feel better soon.

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Oh, I definitely didn't mean to make it seem like I was accusing them, and I certainly would never hold it against them if I was glutened. I am blown away by their generosity and accommodating, kind nature. I love those folks and nothing will change that. :)

I'm just trying to figure it out so that I can know whether I should eat or whether I shouldn't--and how soon I will feel better.

Thank you very much!

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Oh, I definitely didn't mean to make it seem like I was accusing them, and I certainly would never hold it against them if I was glutened. I am blown away by their generosity and accommodating, kind nature. I love those folks and nothing will change that. :)

I'm just trying to figure it out so that I can know whether I should eat or whether I shouldn't--and how soon I will feel better.

Thank you very much!

oh, no, I didn't think you were not grateful at all. I am sure you loved it! I was just reassuring you that they probably took all the right steps. :) I had friends cook for me recently and I was very touched by it all!

My guess is you ate too much of foods that are still tough to process.

Why shouldn't you eat? If you are hungry, eat up! :) No one can say when you will feel better--we do not really know why you feel bad. (sick, CC, or plain old celiac gut recovery)

Hope you feel better soon!!

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I don't THINK it was corn... I eat corn like, daily. Including yesterday. You could be right though...

They haven't, but my best friend called just to chat. I think they were quite sure that they avoided all gluten.

That makes me even more suspicious of the corn, but that could just be me. I haven't had a cold or the flu for 4 years even though I get exposed all the time because I work in Doctors' offices, hospitals and rehab centers. I look at it like I have a hyper autoimmune system that is waged for war. I used to get a bad cold at least twice a year. I'd try laying off the corn to see if you feel better. Corn's in as much or more than gluten, it's another adventure.

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IrishHeart- Thank you. I ate a few gluten-free pancakes, we will see how this goes.

Marilyn R- Perhaps I should try that again. I have experimented with staying away from nightshades and corn but have never come to conclusive results, except that it seems like they don't bother me. I would really miss corn though. :(

I get sick once or twice a year as well. The weird thing is, 5 of my friends were sick over spring break (two weeks ago), and even though I spent time with all of them, I never got it (rare for me). I owed this to my super-healthy diet of mostly fruits and veggies, with very little sugar intake. Then after my increased sugar intake last Friday I got sick the very next day, which makes me think maybe my immune system was weakened and that is why I got it.

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My advice - don't worry about it. You know you have a bug, and with that, all bets are off.

When/if you are glutened/milked, and you react clearly, you'll know it and it will suck. Unfortunately it will happen soon enough.

I hope you feel better soon. Wondering what's going on is no fun and a virus is just yuck.

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I get sick once or twice a year as well. The weird thing is, 5 of my friends were sick over spring break (two weeks ago), and even though I spent time with all of them, I never got it (rare for me). I owed this to my super-healthy diet of mostly fruits and veggies, with very little sugar intake. Then after my increased sugar intake last Friday I got sick the very next day, which makes me think maybe my immune system was weakened and that is why I got it.

Or you may be like me and have a sugar sensitivity. Gives me most of my same symptoms. Sugar (beet and cane), honey, agave, xylitol, raisins, dates.

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Desperate

I just wanted to say how I admire your earnest effort to do the right thing for your health AND your gracious appreciationof some good friends' efforts to host you.

I am into this gluten-free about 2 mos and have glutened myself maybe 3 times (not real sure) thru carelessness and once, thru what I can only describe, as a major senior moment. I so empathize with the corn issue. I have no reason to believe I have issues with it... I love it and would miss it terribly.

Just this last few days I have noticed a huge improvement in the I tense itching from DH and a little less joint pain. I am so cautiously optimistic!

Please please keep us posted as I would love to hear of your progress and how you are coping. :-)

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Just give yourself some more healing time, hon!

This is a long, slow road to recovery and sometimes, we still get "regular stuff" :) --nothing to do with gluten/celiac--like upset tums, viruses, headaches, colds.

It may or may not be other foods, grains, fruits, or whatever....it's still early and you ate a LOT of goodies. You can make yourself nuts trying to figure all that out right now. (many of us have been there/done that)

FWIW, I feel like heck today myself :huh: (too many shrimp, I had a cocktail and I ate waaaay too much carrot cake with buttercream frosting Sunday...oy! :rolleyes: These are foods I do not normally eat on a day-to-day basis)

Hope you're feeling better by today! :)

Best wishes, IH

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If it was me I would likely think I had been CC'd despite my hosts best intentions due to the fact you got D. One has to go to a great deal of trouble to avoid CC.

You could gently enquire sometime (without being snide or accusing) as to just how far they went cleaning and getting a new chopping block and the like and keeping their hands clean from gluten. You don't want to have to go through this again... You need to let them know in the friendliest way possible.

Maybe even invite them over to dinner and then explain and show them what you had to do to make your house gluten free. They might actually be interested if they are the caring folks you say they are. Just remember to have them wash their hands before eating or helping with the food just in case...

Provide them with a guest towel too. I learned this one the hard way! I got glutened from using the same towel my brother did. ( I washed my hands and then wiped my hands and face with the towel. D soon thereafter!)

If you say nothing they might invite you over for another dinner thinking all was just fine! And then repeat of story.

I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend.

Sugar too seems too have been a culprit. Often eating sugar can lower one's immune system. Recently it was just declared to be a toxin I think (help me here folks?? I was told this but didn't see the reference myself).

I even react to store bought gluten free flour. I hear there may be the sulfites in most of the packaging... which the absorbs into the flour--which can be enough for some folks to react. Plus CC is often rampant in packaged flours at the best of times.

When I am going to make a baked goodie, I now grind my own rice flour and have found many ways to make that work. I often like putting in some blended chopped peeled yam or blended peeled chopped white potato and/or some arrowroot (from the local supplement/herb store) to help the flour bind since I don't use eggs in my cooking any more.

I am also starting to use well washed, dried soaked cooked and then cooled beans and put say a cup of them into the blender too. Its way better on the digestion than the dry ground bean flour. Plus again no sulphites or potential CC.

For myself one way to tell the difference between a simple allergic reaction (I have many things I am allergic to--which includes most medium to high salicylates and amines from aged foods) is to have some baking soda in water chased by more water and see if I feel better or not.

If I feel better from taking the baking soda I know I am more than likely dealing with an allergy or sensitivity of some sort or other. If that is the case I then take a benedryl knockoff (the ones with the clear capsules).

I also find taking an epsom salt bath provides a good deal of relief. Maybe also have a vegetable smoothie (I use lettuce, celery, parsley and either a whole or half peeled apple.) I find it a great pick me up!

Otherwise if its just CC to gluten, you have to ride it out!! Maybe even take charcoal capsules at the beginning to absorb the toxins before they knock out so much of your villi.

And/or it could be simply a bug. I certainly have had the experience of having what started as a CC reaction to gluten ends up being an actual bug due to the shock to my system from the CC. Now after being glutened I try to make a practice of just staying low for around 3 days recuperating rather than push myself and get seriously ill.

Good luck--hope you feel much better soon! And let's imagine the bug (if it is a bug) will fly away quickly!

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Thank you, IrishHeart! My stomach is feeling so much better today, even if my head cold is not. I had some delicious stir fry for dinner and all seems to be well. I think moderating my eating is key, and that's something I should have realized a looong time ago. Good luck with your own wellbeing! Buttercream frosting sounds like it was worth it though. ;)

yolo - That is so very helpful, thank you! I hope I won't have to go completely sugar-free, because I still use small amounts in my baked goods and I am suspicious of artificial sweeteners. I will just have to greatly moderate for now. I use my mom's oven, in which she bakes glutenous things very often, and I've never noticed any reaction to it. But I will keep my eye out for all of those things. I really appreciate the good advice. For my goodies lately I have been using a mixture of millet and rice flower, often with some cornstarch (I don't want to give that up!!). Using beans and potatoes sounds like a good idea though.

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Sorry, just had to mention that this comment "I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend" is not substantiated. (No medical or scientific articles to back that up.)

It's been questioned before. No offense to the OP, she's given me good advice before, but I personally do not agree with the oven advice. I'm very sure it it irrevelant. :angry:

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Sorry, just had to mention that this comment "I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend" is not substantiated. (No medical or scientific articles to back that up.)

It's been questioned before. No offense to the OP, she's given me good advice before, but I personally do not agree with the oven advice. I'm very sure it it irrevelant. :angry:

I react to food from shared oven too. It was the only intolerance I discovered while keeping a food diary, only at that time I brushed it off as total nonsence.

Unfortunately my body don't need any scientific evidence to get sick. It even goes further than that and gets violently ill from grain products that are scientifically proven harmless to celiacs.

I'm sure the oven advice is irrelevant to most celiacs, but not all of them and unless you try it you cannot know which of the group you belong to.

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I react to food from shared oven too. It was the only intolerance I discovered while keeping a food diary, only at that time I brushed it off as total nonsence.

Unfortunately my body don't need any scientific evidence to get sick. It even goes further than that and gets violently ill from grain products that are scientifically proven harmless to celiacs.

I'm sure the oven advice is irrelevant to most celiacs, but not all of them and unless you try it you cannot know which of the group you belong to.

Thanks Pac for substantiating the experience of at least some of us here.

If this experience is so rare, why is it that at certain chain restaurants like PF Chang's they now use dedicated ovens for the likes of us?? And why is it that my bf and I and another friend of ours all have suffered from eating food made in ovens also used for baking gluten??

IMHO a lot of what we experience has not even been begun to be researched by doctors and scientists. It is not from lack of opportunity, it is from lack of funding as well it seems as an overall bias against doing research on this subject called celiac and severe gluten sensitivity, not to mention other food intolerances. In addition IMHO there is the sacred cow factor. What could be more sacred than an apple pie or a big mac or a hot dog bun or pizza or a chocolate cookie for instance--and then to have to go further and really study the vagaries of cross contamination of gluten with some of us more sensitive folk, well dear ones that is generally not even on the page. Eventually someone famous enough will spur on or pay for this kind of research. For now I am not holding my breath.

It is my wish that certain folks here were a little kinder in their discourse. It makes me question my participation on this site, when here I am just trying to help someone consider all the possibilities, just as some have for me in the past. The original quester appreciated my comments. Why cast stones or get angry?? It simply is not needed. We are a community here to support each other IMHO, not bully each other or wave pointing fingers.

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Thank you, IrishHeart! My stomach is feeling so much better today, even if my head cold is not. I had some delicious stir fry for dinner and all seems to be well. I think moderating my eating is key, and that's something I should have realized a looong time ago. Good luck with your own wellbeing! Buttercream frosting sounds like it was worth it though. ;)

Yes, it was worth it! :lol: and my tight jeans prove it. :rolleyes:

Glad you feel better, hon. My guess is you just "overdid it". And I do not blame you--you should see what I ate the first time my friend (a professional chef) cooked for me. Let's just say...OINK! :D

One thing you might consider is offering your friends who will be cooking for you a flexible cutting board. I bought a package of 4 at Bed, Bath and Beyond--they come in pretty colors. They can be found on the internet, too. The friends who cooked for me used it and they keep it at their house. (The other friend who also cooked for me--the chef?--she bought one herself before I came, knowing it was a necessity. How sweet is that?)

They all know to borrow my colander, too if they require it.

Just some thoughts!

Some people in our lives "get it" and it sounds as if your friends do! Lucky you!

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As the original poster sort of hinted, there's really no reason at all to be looking for a culprit here and I certainly wouldn't be grilling the hosts based on her "reaction." desperateforhealth ate too much one day, then didn't eat enough the next day, and maybe had a virus on top of that. It's really pretty much impossible to pinpoint anything given that scenario.

richard

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Thanks Pac for substantiating the experience of at least some of us here.

If this experience is so rare, why is it that at certain chain restaurants like PF Chang's they now use dedicated ovens for the likes of us?? And why is it that my bf and I and another friend of ours all have suffered from eating food made in ovens also used for baking gluten??

IMHO a lot of what we experience has not even been begun to be researched by doctors and scientists. It is not from lack of opportunity, it is from lack of funding as well it seems as an overall bias against doing research on this subject called celiac and severe gluten sensitivity, not to mention other food intolerances. In addition IMHO there is the sacred cow factor. What could be more sacred than an apple pie or a big mac or a hot dog bun or pizza or a chocolate cookie for instance--and then to have to go further and really study the vagaries of cross contamination of gluten with some of us more sensitive folk, well dear ones that is generally not even on the page. Eventually someone famous enough will spur on or pay for this kind of research. For now I am not holding my breath.

It is my wish that certain folks here were a little kinder in their discourse. It makes me question my participation on this site, when here I am just trying to help someone consider all the possibilities, just as some have for me in the past. The original quester appreciated my comments. Why cast stones or get angry?? It simply is not needed. We are a community here to support each other IMHO, not bully each other or wave pointing fingers.

I'm very sorry. You're right.

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If it was me I would likely think I had been CC'd despite my hosts best intentions due to the fact you got D.

Maybe even take charcoal capsules at the beginning to absorb the toxins before they knock out so much of your villi.

With all due respect, not to quibble, but I wish to point out that having a bout with diarrhea does not always mean it is from gluten ingestion. It can occur for many reasons: another food intolerance, too much sugar, a stomach bug, dairy, poor digestion, a medication side effect.

Charcoal tablets are used in the case of food poisoning. Many people suggest they are useful after gluten CC. Maybe so, but they act like sponges in the gut. Be careful of using these to an extreme as they will also absorb EVERYTHING else in the gut, including essential vitamins, minerals and nutrients. If you do choose to use them, be sure to drink plenty of water or you will feel really dehydrated, which is the last thing you need when you are already experiencing diarrhea.

In all of my research, I have never read that one small hit from gluten CC is going to "knock out a lot of villi". It will start the inflammatory process for sure, but it takes a long time for villous destruction to occur. Let's not scare the beejeepers out of a newbie. :lol:

Meanwhile, she knows what it is---as was suggested, she ate too much with a tender gut---and has already recovered.

Sometimes, it is just a case of the obvious.

Still healing the gut--too much to process down there.

IMHO

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I thought I might have been glutened cuz I felt like I had the flu and I had eaten something that may have contained gluten. Then my bf got the same symptoms, so it really was a flu.

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Sorry, just had to mention that this comment "I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend" is not substantiated. (No medical or scientific articles to back that up.)

It's been questioned before. No offense to the OP, she's given me good advice before, but I personally do not agree with the oven advice. I'm very sure it it irrevelant. :angry:

For the record, I do not see how any of these comments can be construed as "pointing fingers" or as "bullying." There are no accusatory or unkind words here. None at all! She just said she does not "personally agree".

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You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
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    • Sometimes when those chilly winds begin to blow, and the temperatures fall, the days get visibly shorter, what we need and what we want is comfort food. Well, look no further than this simple, easy twist on scalloped potatoes. A little ham and a bit of cheese work wonders to turn that old favorite into a meal all its own. View the full article
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