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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.

Gluten Free Oats
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7 posts in this topic

Never had them until recently my sister thought it would be nice to make me oatmeal raisin cookies out of them... I was real sick and had stomach bleeding for the next week!

Are they really gluten-free?

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Never had them until recently my sister thought it would be nice to make me oatmeal raisin cookies out of them... I was real sick and had stomach bleeding for the next week!

Are they really gluten-free?

How long have you been gluten-free? I've just recently started using Bob's Red Mill Gluten-Free Oats and don't have a problem with it. I waited to try it until I was 9 months gluten-free. There's a certain percentage of celiacs that cannot tolerate oats, even the gluten-free kind. I think I've read 10 to 15%. I still only plan to eat it occasionally but not every day...don't want to push my luck.

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For some of us, no. A certain percentage of celiacs react to gluten-free oats the same as they do gluten. You might also ask you sister about how they were made--did she use the same scratched up cookie sheets and wooden spoons she uses for wheat flour cookies? Did she use spices (like cinnamon) or sugar that she has had in her kitchen and used for regular baking. Some people when they bake they did the measuring spoons int he flour and then dip the same one int eh bag of sugar, for example, so the sugar would be contaminated with traces of flour. The sugar and other ingredients could also get contaminated just by being out and open when she is bakign with wheat flour. Flour goes up int he air for several hours and settles on things so it's very hard to make something gluten-free in a kitchen that has recently made regular baked goods. Even if she used all new ingredients and all new utensils and put parchment or foil over her pans, if shes a frequent baker chances are good that there was hidden flour cc somewhere.

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Just piping up as one of that 10-15% who can't have gluten-free oats (best we can tell). If you have an issue with all oats and it wasn't just gluten cc, you might be helped looking up Avenin sensitive enteropathy - that's the official name for reacting to the oats, I believe. :-)

And IF you have this, I'm afraid things just got much more complicated, at least if you are in the USA. :( Unless a food is certified gluten-free by the CSA, then they do NOT view oats as a problem. Which means that anti-cc practices for gluten-free oats are typically not in place. Many gluten-free products, flours, and mixes are contaminated with gluten-free oats, sadly. Many gluten-free facilities process gluten-free oats in them and so make it not so good for oat sensitive folks.

Bob's red mill and lundberg rice, for example, are often a problem for oat sensitive celiacs, due to processing for the former and oat cover crops for the latter.

My daughter and I suspect that we may be in this category - I haven't tried any gluten-free oats yet because I react so badly to just mild cc that it frankly scares me some - but we can't have most gluten-free mixes and products.

If you're having a lot of trouble still with getting better, this could definitely be an issue.

If, however, you have been doing just fine with no trouble at all, then potential gluten cc might be more the issue, ya know?

shauna

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Just piping up as one of that 10-15% who can't have gluten-free oats (best we can tell). If you have an issue with all oats and it wasn't just gluten cc, you might be helped looking up Avenin sensitive enteropathy - that's the official name for reacting to the oats, I believe. :-)

And IF you have this, I'm afraid things just got much more complicated, at least if you are in the USA. :( Unless a food is certified gluten-free by the CSA, then they do NOT view oats as a problem. Which means that anti-cc practices for gluten-free oats are typically not in place. Many gluten-free products, flours, and mixes are contaminated with gluten-free oats, sadly. Many gluten-free facilities process gluten-free oats in them and so make it not so good for oat sensitive folks.

Bob's red mill and lundberg rice, for example, are often a problem for oat sensitive celiacs, due to processing for the former and oat cover crops for the latter.

If you're having a lot of trouble still with getting better, this could definitely be an issue.

If, however, you have been doing just fine with no trouble at all, then potential gluten cc might be more the issue, ya know?

shauna

I am with Shauna here. I tried gluten free oats (Bob's Red Mill) after I was 7 months gluten free. I reacted so bad to them. I had reflux, severe abdominal pain/gas/bloating, constipation x 5 days and a blistering rash on my nether cheeks. I refused to eat them again. I still used Bob's products on a regular basis after this though. A little after my 1 year gluten free mark, I started having issues again. This time I was having horrible reflux, a pinching/pulling sensation in my RUQ, burning epigastric region and diarrhea. First thing that came to mind was my gallbladder. Had all the tests for it and found it to be functioning suboptimal, but still not a surgical canidate. Had a repeat scope in April of 2010 and found an ulcer and imflammation from esophagus to small intestine but intact villi now. Doc said it was the ulcer causing me so much problems. I did heal it and still was having the other symptoms. In Aug. I went back because I was having sever D and fat in my stool. Doc said I was having a flare up of my celiac and needed to go on steriods. I refused. I did leave with a RX of creon (which helps a lot. I don't take it anymore) and I decided to go back to square one. This is when I realized that the Bob's may be a problem due to oat cc, and I never gave it a thought back when I tried the oats themselves. Jan this year I went to a gluten free bakery in Downtown Disney and ate a few things. I knew ahead of time they used flours from Bob's. That little experiment definately affirmed that I have problems with all of those products due to the oat cc. All my symptoms came back and I had to start taking the creon again just until my symptoms subsided. I don't even give my youngest son any oats, just because it's easier that way. He doesn't like oatmeal, but he does like it in other things but oh well, I just don't want the risk.

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Thanks, my sister used all new materials (she's terrified for me) and even self-cleaned the oven first :D

So I guess I have Avenin sensitive enteropathy - thanks T.H. for the word, it helped me read up on it more. 10% is really low! Especially for the reaction it gave me!

Roda - your story, together with all my experiences... I'm thinking of just knocking off all processed foods and going on a bare diet... At this point, it seems so much easier!

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Thanks, my sister used all new materials (she's terrified for me) and even self-cleaned the oven first :D

So I guess I have Avenin sensitive enteropathy - thanks T.H. for the word, it helped me read up on it more. 10% is really low! Especially for the reaction it gave me!

Roda - your story, together with all my experiences... I'm thinking of just knocking off all processed foods and going on a bare diet... At this point, it seems so much easier!

This has been a helpful thread. I can not tolerate any oats, so have stayed away from them for almost 10 years. Learning there is oat c.c. is so helpful. This year has been a year of setbacks,and lots of confusion. For many years I was symptom free. After getting info from members here I decided to quit eating any gluten-free products for a while. Within 3 days my symptoms were better. Every once in a while I try a product, like Nature's Gate corn flakes. (I really like the taste of them.) I think this is odd. The first time I tried them I was so excited because I didn't have a reaction. The second time, different box, a few months later, and I reacted. So, now I am just cooking well rinsed organic brown rice and whole organic beans, etc. The suggestions here about sorting them and washing them well has helped. I am back to feeling pain free again and my digestion has balanced out.

One tip: I don't tolerate most drugs so have had to try many herbs, etc. to see what might help. The combination that keeps my gut healthy now is acidophilus at night, chlorella 1 tsp. 2 times a day, and about 4 oz. of Xango juice. They all have different properties, and I can't say it will help everyone, but it has worked well for me. 10 yrs. ago I was very, very ill, in and out of the hospital, without a clue what was causing all the digestive problems. Just quitting eating gluten was not enough for me to get totally well. I also had to get allergy tested and quit eating those foods I am allergic to.

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    • Weird Reaction
      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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      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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