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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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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.

Sick From Same Food Eaten Before With No Reaction
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10 posts in this topic

I was diagnosed in November of 2010, and went gluten free the next day. I saw immediate improvements, but I am still often sick. I did a cleanse recently-Revitalix/Detoxitech, and felt a million times better, and had no diarrhea for a couple of weeks after.

But now it's back. I was sick one day last week and it was horrible, now I've had diarrhea two days in a row. I had the gluten free meatloaf I had made a couple nights agp (ate that night without being sick) and a pasta salad (gluten-free obviously, that I had also eaten with no problems) and was super sick yesterday, I wanted to eat the same thing just to confirm that's what it was and it wasn't a freak occurrence, and I was sick again today. It seems to happen a lot where if I eat something once then have it for leftovers the next day I get sick the second time but not the first.

I'm wondering if anyone has ever experienced this? Or am I crazy? i'm so frustrated, and can't seem to narrow things down. I just want to feel better. Sometimes I wonder if this is just normal in the first couple of years after going gluten-free...

I would appreciate any help that is offered.

Thanks! Blaire

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I suspect it is one of the lesser ingredients in the "new" gluten free food ingredients. You might try keeping a food journal. Before starting a gluten free diet you probably didn't eat a lot of xanthan gum, guar gum, tapioca, millet, teff, sorghum, quinoa, or any of the other flour types for substituing. You may also be intolerant of other ingredients or cross-contamination from kitchen utensils.

Keeping a food journal may help you find the source of the tummy troubles.

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Thanks very much for that. I haven't change my utensils yet, that's a good idea. I keep thinking it's not necessary for me to do all these little things. But keep finding out that yes I do need to be that careful.

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some things i just need to eat in moderation. i'll be fine eating (say, peppers for example) a little one day or in a meal but if i have leftovers for lunch the next day i will have trouble digesting them - for some reason?? i don't know why. but if i eat something different, 'safe food' lol (<tuna sandwich on udi's!) in between then i am fine eating it again later - same exact stuff. my theory is that my intestines are not healed all the way so i hafta take it easy on them. tomatoes, same thing, i can eat a little even with the skins on and raw - but if i overdo it my guts let me know! dairy, soy, even potatoes and bananas. keeping a food journal is an excellent idea. and if all else fails, i go back to what i *know* will not make me sick to "reset" my system. if it gets too out of control, i will fast for a day and begin adding 'safe' food. but i don't like to unless i absolutely have to because i am still trying to gain weight! good luck :)

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I had to track down a cross-contaminated bottle of vanilla in my kitchen when I first went gluten free. Like your situation, a little bit was fine a second helping of the same dish and I was sick.

I was suspecting the colander rinsing the gluten free pasta.

A non-Celiac friend of mine was getting sick after trying some gluten free stuff, best I can figure she can't handle xanthan gum. :blink: Here I was making a gluten eater sick with gluten free stuff. :ph34r:

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I find that sometimes I can eat a small amount of something once and not notice a reaction. Then, if I continue to eat it over several days it starts to bother me. Or, it could be that it takes two days for you to notice a reaction. My son is like that. I notice the next day and he notices the day after that. That confused us for a long time. A food diary is a good idea. Keep track of the brands too, some have more cc than others. It can also be from opening a new package. Since you posted here in the super sensitive area, why not avoid those processed gluten free foods completely. That's what super sensitives need to do. It's a lot more work cooking, but worth it for how much better you feel.

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Sounds like good advice. I will restart my food journal...

When you say avoid the processed gluten-free foods and make your own, where do you draw the line? buying rice pasta would be ok still wouldn't it.? What about something like rice tortillas? I never buy the muffins or bars, and actually just bought my first pack of glutino chocolate vanilla cream cookies--I lasted since November without cookies, figured I earned a pack. From reading other posts it sounds like it's not uncommon to react to Chex, which I have bought a lot of recently...and had wondered about. I guess that would be something to avoid too. I would think baking my own items would be fine too as long as I'm careful, I haven't made myself sick so far that I've been aware of.

And utensils, getting my own plastic ones would be best? And a glass cutting board? More costs!! I live with my boyfriend who does eat gluten, but he is very careful and conscientious, I just might have to tighten things up in the kitchen to make sure we aren't sharing tools, and cupboards? (my stuff is currently on a top shelf, his on the bottom ones).

You guys are really great help, I should have joined sooner to get this support. It's so nice to know that I'm not the only one who struggles, the doctor made it seem like I just have to stop eating gluten....just like that, and I'd feel better. Not the case as I'm learning still.

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Sounds like good advice. I will restart my food journal...

When you say avoid the processed gluten-free foods and make your own, where do you draw the line? buying rice pasta would be ok still wouldn't it.? What about something like rice tortillas? I never buy the muffins or bars, and actually just bought my first pack of glutino chocolate vanilla cream cookies--I lasted since November without cookies, figured I earned a pack. From reading other posts it sounds like it's not uncommon to react to Chex, which I have bought a lot of recently...and had wondered about. I guess that would be something to avoid too. I would think baking my own items would be fine too as long as I'm careful, I haven't made myself sick so far that I've been aware of.

And utensils, getting my own plastic ones would be best? And a glass cutting board? More costs!! I live with my boyfriend who does eat gluten, but he is very careful and conscientious, I just might have to tighten things up in the kitchen to make sure we aren't sharing tools, and cupboards? (my stuff is currently on a top shelf, his on the bottom ones).

You guys are really great help, I should have joined sooner to get this support. It's so nice to know that I'm not the only one who struggles, the doctor made it seem like I just have to stop eating gluten....just like that, and I'd feel better. Not the case as I'm learning still.

Make sure your boyfriend brushes his teeth before kissing you if he has been eating gluten or drinking beer. The main thing sto replace and get dedicated gluten-free only are: toaster, cutting board, non-stick pans with scrathes, plastic spatulas and thigns if they are scratched, wooden spoons and the pasta strainer.

I also wanted to mention that reactions can be delayed by as much as 72 hours after you get glutened (it's different for everyone) so keep that in mind when you journal your food and reactions. You can't always blame just the food you ate that day, you sometimes have to look to what you ate the day before to track down where you are getting cc'd.

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When you say avoid the processed gluten-free foods and make your own, where do you draw the line?

It's sometimes a bit of trial and error to find that out. In studies, it varies. A recent one had most people just mildly ill with 50mg of gluten a day, but safe on 10mg. However, one member of the study had a complete relapse on 10mg a day.

Pretty much, that means we're on our own, trying to figure out what is safe for us, sigh.

A first step can be to check out your gluten-free products - if you are in the States, especially, not all gluten-free food is made the same. Some have a 20ppm concentration, some a 10ppm concentration of gluten, and some have 5ppm. Not all gluten-free food is even tested for gluten here, so that's one thing to make sure of: buy gluten-free products that have been tested for gluten.

And since gluten-free products actually HAVE gluten, even though it's a tiny bit, the more products you eat, the more gluten you get. I have wondered if that is sometimes the reason for that 'good once, bad twice' issue that happens to so many of us. If you still have some of those possibly contaminated foods left? Maybe try to freeze them and have them another day, when you haven't had them so recently.

It may just be that the second time, it put your over your gluten threshold, as it were. If that's the case, you could try them another day, when you haven't had other processed gluten-free food, and they may be just fine.

Re: how gluten free you have to go?

I know some who just switch to products that are made in dedicated gluten-free facilities or which are tested for gluten, and that's been enough. I know some who drop all grain based gluten-free products like tortillas and cookies, and go to whole grains, fruits and veggies, vinegar and a few condiments, and that's been enough.

Then there's the extreme end of the spectrum that's like living decades ago - that's where I'm at. I have an oil, a salt, some dried beans, and one grain (still checking that) - that's all my processed food. Otherwise, it's fruits, veggies, and meat from farmers that I have interviewed to check on their mulches and fertilizers and compost to make sure none contained gluten grains. The food can't have been washed with soap or have coatings or sprays, usually, either.

It's pretty crazy. I used to be a mom who took the kids out to McDonald's or Carl's Jr's at least 2 times a week (*cough* maybe more, on the bad weeks, LOL). Now? I'm doing things like making vinegar from apples that I let ferment naturally without anything added. Growing my own herbs. Everything is from scratch.

Let me ease your mind a bit, though. I know of very, very few people who have to go to that extreme. There seem to be a slowly growing number who have had to drop almost all processed foods, though, so if you're still sick and eating processed grain products, you might want to go that extra step. Hopefully that won't be necessary, though. :-)

Oh! One last thing. If you want to calculate how much gluten you're getting a day from your gluten-free processed foods, to kind of keep track, as it were? See how much you have on the days you seem to get sick, for example, here's how you do it.

1. Figure out how many grams you ate - usually, the serving size will list it in grams, so you can figure it out with that.

2. Convert this to kg (if it's been a while since you did this, just move the decimal 3 places to the left. 3g = .003kg

3. multiply the kg times the ppm of the food (usually 20, 10, or 5). That will tell you how many mg of gluten you just ate.

If you ate a whole box of something, like a frozen meal? You should know that you will probably get a little extra food, and therefore gluten. The penalties for short weighting a product are severe enough that most companies add a little extra to make sure they are over the weight listed on the box.

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There's another thing I thought I would mention too...if you are getting sick from the left overs of food that didn't bother you the first time, maybe your storage containers are cc'd? Plastic is pourous, so if you're using containers that were previously used for gluten..it'll get ya. ;)

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