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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.

Cross-Contamination Realities- Grits
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6 posts in this topic

I've posted another question here,I'm basically just trying to figure out if I'm in the super sensitive Celiac category, should I act like one for a little while, or if I can relax since this is all so new to me.

I had grits this morning from a cafeteria and it occured to me I should see what the gluten-free community says about grits even though it's made from hominy. Most people seem to worry about cross-contamination.

I don't feel anything with the grits, but I did feel nauseated when I ate a cold cereal, which was listed less than 20ppm of gluten. I've had steel-cut oats, no problem. (I've avoided all other oats with little effort.) I felt sick from Chinese food, and decided to give it up. There is no doubt that I don't tolerate caramel color at all, even from a single cough drop.

The great thing is that I know what to look for now. Should I go to the paranoid level and try to eat all fresh foods that I prepare or are from a reputable gluten-free source?

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It seems to be a matter of preference in the beginning. IMO, there's two ways you can go:

1. Go super gluten free from the beginning, eating only whole, fresh foods or reputable gluten free grains. Then when symptoms resolve, slowly add foods back in and see what you tolerate.

or

2. Go gluten free with whole foods and gluten free products, and then if things do not resolve, slowly take things out until you stop having reactions.

Right now, it sounds like you're probably following a slightly risky gluten free diet, not quite as gluten free as #2. Some examples.

Steel cut oats, if they aren't tested to be gluten-free, are a huge risk. They are almost always contaminated (to the point that scientists thought for a while that oats had some similar proteins to wheat, when it was just cross-contamination).

Chinese food (like fried rice) often has soy sauce added, and soy sauce has wheat as an ingredient. Unless you made it yourself with gluten-free soy sauce, of course.

Grits might be cc'd (many tolerate them fine) but if you didn't discuss your dietary needs with the chef at the cafeteria - avoiding gluten cross-contamination - then that's a more likely cause of gluten cc than the grits themselves.

So as to what to do, I guess I'd say you should decide what matters more, at this point. The diet challenges or the symptoms challenges. For me, the symptoms were so debilitating that the diet challenge of going super gluten free was better than living with the symptoms. My father was the opposite.

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If you're in the US and don't tolerate carmel color, it's not a gluten issue. It's made from corn or the package has to declare wheat.

I agree with T.H. that you really don't quite have the diet right yet. You have to get certified gluten-free steel cut oats. Bob's Red Mill makes them. Chinese food is always a no-go. Even if you order a dish without the soy sauce (which is usually made from wheat and soy) it will be CC'd from the seasoned woks. I worry less about grits, although you can never be 100% sure about gluten CC with any grain.

I don't think eating fresh foods you prepare and sticking to tested gluten-free grains is "paranoid". I think that's the celiac diet. I rarely eat out, and if I do it's at a restaurant with a gluten-free menu. For bread, I buy brands like Rudi's and Udi's. I get my flours from Bob's Red Mill, who tests for gluten.

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I've posted another question here,I'm basically just trying to figure out if I'm in the super sensitive Celiac category, should I act like one for a little while, or if I can relax since this is all so new to me.

I had grits this morning from a cafeteria and it occured to me I should see what the gluten-free community says about grits even though it's made from hominy. Most people seem to worry about cross-contamination.

I don't feel anything with the grits, but I did feel nauseated when I ate a cold cereal, which was listed less than 20ppm of gluten. I've had steel-cut oats, no problem. (I've avoided all other oats with little effort.) I felt sick from Chinese food, and decided to give it up. There is no doubt that I don't tolerate caramel color at all, even from a single cough drop.

The great thing is that I know what to look for now. Should I go to the paranoid level and try to eat all fresh foods that I prepare or are from a reputable gluten-free source?

Chinese food has been off my list for a long time. Too risky. Even "wheat free" soy sauce usually has some wheat! Ugh!

Eating in a cafeteria that is not committed to be gluten free is dangerous. The chef can stir one pot of gluten with a spoon and use the same spoon in another "gluten free" pot.

The same goes for tortillas in Mexican food places. I ask them to use a clean pan to warm up the corn tortilla and NOT to put it on the stove where they warm up the flour tortillas.I ask them to wash their hands or change their gloves. I about drove a man crazy last weekend trying to explain what i needed. I didn't get sick, so he did a great job. I get so frustrated sometimes in ordering, especially if there is a language barrier, that I almost cry. I didn't use to persist because i was embarrassed, but not anymore.

The longer you are totally free of gluten the easier it will be for you to sort out where it is hiding. Also, as you find the other things you are allergic to, it will get easier.

Some candy is made on conveyor belts that have gluten on them and they don't have to list that because it is not an ingredient. I don't eat any candy except for dark chocolate without dairy or nuts made in a facility without gluten. I don't eat cough drops.

I got really tired of accidentally getting glutened by eating a product that wasn't really gluten free, so I'm rarely eating them anymore. My episodes of getting sick have diminished to an exposure only once in a very great while. My digestion is back to normal and no more pain. This site with everyone's helpful ideas is what got me over the hump. Good luck. You'll figure it out. Be patient with yourself.

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Some candy is made on conveyor belts that have gluten on them and they don't have to list that because it is not an ingredient. I don't eat any candy except for dark chocolate without dairy or nuts made in a facility without gluten. I don't eat cough drops.

Can you substantiate this, please? I believe it's a rumor and no manufacturers have said anything about belts with gluten when we have written and asked about CC.

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Thanks, everyone. The caramel color is still an outstanding issue. There seems to be some disagreement, I just know that when I eat caramel color products, I get terrible indigestion and a swollen throat, so quickly that I could easily connect it to caramel color. But on the other hand, I do recall sometimes having a cola and not being bothered and just wondering if I was just having a "good" day.

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      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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