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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?  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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megsybeth

If You React To Oats What's It Like?

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I know about 5% of celiacs can't have oats, even when not contaminated. I've had a couple cases of stomach cramping after eating oats but I don't want to be in that 5%! I've only been on the gluten-free diet for about a month so there have been lots of pains and issues here and there along the way. But last week I made some delicious raspberry oat bars and had cramping and D. Today I just had a bowl of oatmeal for breakfast and had cramping and a feeling that worse might be to come. Both times it was BRM oats.

So is the reaction to oats quick, like to lactose? Or is it something that would be delayed? Also, is this something I might get over?

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With me, the reaction is very much like my reaction to wheat gluten. It isn't something you get over. It is genetic just like celiac disease. You can substitute sorghum, millet, rice, etc. It's not so bad.

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Everyone will have different reactions. Oats hit my gut hard, I feel like cement is slowly moving through me, I get dizzy and stupid and feel terrible for hours. Gluten affects me differently, but then again I may have an additional oat allergy--no idea. Theoretically it should affect you the same way gluten does, or not at all.

I assume you're eating safe oatmeal, from somewhere like Bob's Red Mill; otherwise cc can be a problem, too, and then you're reacting to oats AND gluten.

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My reaction to gluten-free oats is : pain across my shoulder blades ( upper back) much like a gallbladder attack and burning in my gut and later lower abdominal pain,

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Same as gluten for me. C for 2 or 3 days with pain and then D. You could try eliminating oats for 6 months and then trial them again. Give your gut some time to heal and then see if they work for you.

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Very similar to gluten - go down and form a great big brick of a lump. Bloated up, headache, constipation and depression - in fact, may have mentioned on here before that I think they make me cry (I know that sounds stupid) but they make me miserable and teary :unsure: !

The gluten free version has the same effect - maybe not quite as bad, but no good.

Won't be bothering to try them in the future.

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My specialist told me to avoid all oats.

Where did you get the 5% number from? Not accusing at all, I just want to know where you get your info. When I looked into it it seemed like 1 study would show most celiacs have oat issues, while another study showed that nearly all of them didn't.

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I had stomach cramps!!! But then I read you are supposed to avoid even gluten-free oats for the first 3-6 months of being gluten-free then reintroduce them.

I reintroduced them 4 months after being gluten-free and I have not had a problem with gluten-free oats since.

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Similar to gluten reaction. Can't imagine it's something you'll get over. In fact, it might get worse.

richard

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I get intestinal symptoms from oats--diarrhea, cramping.

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Thanks, everyone. I'll definitely avoid them. Cavernio, I think I've seen 5% a few places. I'm pretty sure Peter Green's book was one of them, the most recent edition. I guess it's not so important. If it's 80% and I have issues or it's 1% and I have issues, it's better to avoid. I'll also have my son avoid

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I am one of the unlucky few who cannot tolerate even gluten-free oats. They make me sick the same way gluten does. Bummer!

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Hi,

I am having a gluten reaction I cannot track down, so am visiting gluten-free oats to see if maybe I am having trouble with them. I read the posts here and really must tell you that some of you are giving up too easily. Some foods will give you symptoms the first few times you eat them after not eating them for a while. Oats, beans, apples, nuts you all have your lists. But if you consistently eat them, and are sure they are not contaminated, often you get used to them and the bloating, serious gas issues, diminish or go away completely. Just plan ahead so maybe not plan on being in Church or a meeting right after eating them! 

But I am having the rash problem, too. I am so used to stomach problems, sometimes I don't know if I was glutened, but boy, the rash is a sure sign! Can't even sleep! FYI Along that line, I was reading up on mangoes, since I love them so much, and found people get terrible allergic reactions to the skins, trees, and they are related to poison oak or ivy, and cashews. One lady had to go to the hospital and besides Benadryl, they put her on Pepcid. I can't take that because of heart issues, but there is another prescription I take as needed for reflux, and it did help the gluten rash...it took the edge off so I could focus on something else. It was not a brain killer like Benadryl. I don't know that Benadryl even helps, but I think the reflux med did. So, if you all have a reflux medication, you might try it for the gluten reaction. Try it at least twice and see what you think. I stayed on it for about 5 days.

One more tip I discovered for cross contamination that I have not seen elsewhere: pet food! My son was feeding his cat and not where I told him too...he had dry cat food crumbs all over the place! And he used to have Cheerios until my last serious attack. Discovered his cereal dust all over, too. So, cat food goes out and we no longer bring any gluten food into the house ever again! It has taken me 4 months to get better and I am still not sure which discovery may have been the culprit. The rash is better, but I am still not back. I discovered the Gluten factor when I was 55 after contracting pneumonia and couldn't eat! I actually felt better! Well, hope these tips help someone. You all have helped me for a long time.

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. I read the posts here and really must tell you that some of you are giving up too easily. .

I can assure you (that for me) that is not the case .

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Hi,

I am having a gluten reaction I cannot track down, so am visiting gluten-free oats to see if maybe I am having trouble with them. I read the posts here and really must tell you that some of you are giving up too easily. Some foods will give you symptoms the first few times you eat them after not eating them for a while. Oats, beans, apples, nuts you all have your lists. But if you consistently eat them, and are sure they are not contaminated, often you get used to them and the bloating, serious gas issues, diminish or go away completely. Just plan ahead so maybe not plan on being in Church or a meeting right after eating them! 

But I am having the rash problem, too. I am so used to stomach problems, sometimes I don't know if I was glutened, but boy, the rash is a sure sign! Can't even sleep! FYI Along that line, I was reading up on mangoes, since I love them so much, and found people get terrible allergic reactions to the skins, trees, and they are related to poison oak or ivy, and cashews. One lady had to go to the hospital and besides Benadryl, they put her on Pepcid. I can't take that because of heart issues, but there is another prescription I take as needed for reflux, and it did help the gluten rash...it took the edge off so I could focus on something else. It was not a brain killer like Benadryl. I don't know that Benadryl even helps, but I think the reflux med did. So, if you all have a reflux medication, you might try it for the gluten reaction. Try it at least twice and see what you think. I stayed on it for about 5 days.

One more tip I discovered for cross contamination that I have not seen elsewhere: pet food! My son was feeding his cat and not where I told him too...he had dry cat food crumbs all over the place! And he used to have Cheerios until my last serious attack. Discovered his cereal dust all over, too. So, cat food goes out and we no longer bring any gluten food into the house ever again! It has taken me 4 months to get better and I am still not sure which discovery may have been the culprit. The rash is better, but I am still not back. I discovered the Gluten factor when I was 55 after contracting pneumonia and couldn't eat! I actually felt better! Well, hope these tips help someone. You all have helped me for a long time.

I have seen threads  addressing  pet food as a CC issue ,, that is why many of us feed our pets gluten free food.

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I was also told by my dietician to keep off them for 6 months and then reintroduce them slowly which I will be trying this week :)

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I react to all prolamins except rice:  sorghum, corn, oatmeal included.  My reaction is most of the usual symptoms plus strong neuropathy returns and burns in my legs, it's quite an exacting indicator.   You can look at the research of "oats AND celiac" on pubmed.com.  I do know corn comes in hundreds...thousands....of wildly different seed genetic mixes of proteins, so it may be that some types of oats are ok for most of us, and that others aren't.  The labs running the experiments on oats, buy their oats from a special medical/scientific supply house, and it may be those oats are fine for celiacs, as a lucky coincidence, while every other oat variety and new crossbreeds...like goes into our cereals...are never tested but are toxic. 

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Hi Lenore,

 

Welcome to the forum! (qouth the raven) :)

 

Yep, pet food can be a problem.  Them cats like to eat and then lick their fur all over so they basically are gluten coated fur bombs.  Have you read up on dermatitis herpetiformis (DH)?  That is a rash some people with celiac disease get.

 

Anyhow, good to have you here, we can use the company! :)

 

Hi,

I am having a gluten reaction I cannot track down, so am visiting gluten-free oats to see if maybe I am having trouble with them. I read the posts here and really must tell you that some of you are giving up too easily. Some foods will give you symptoms the first few times you eat them after not eating them for a while. Oats, beans, apples, nuts you all have your lists. But if you consistently eat them, and are sure they are not contaminated, often you get used to them and the bloating, serious gas issues, diminish or go away completely. Just plan ahead so maybe not plan on being in Church or a meeting right after eating them! 

But I am having the rash problem, too. I am so used to stomach problems, sometimes I don't know if I was glutened, but boy, the rash is a sure sign! Can't even sleep! FYI Along that line, I was reading up on mangoes, since I love them so much, and found people get terrible allergic reactions to the skins, trees, and they are related to poison oak or ivy, and cashews. One lady had to go to the hospital and besides Benadryl, they put her on Pepcid. I can't take that because of heart issues, but there is another prescription I take as needed for reflux, and it did help the gluten rash...it took the edge off so I could focus on something else. It was not a brain killer like Benadryl. I don't know that Benadryl even helps, but I think the reflux med did. So, if you all have a reflux medication, you might try it for the gluten reaction. Try it at least twice and see what you think. I stayed on it for about 5 days.

One more tip I discovered for cross contamination that I have not seen elsewhere: pet food! My son was feeding his cat and not where I told him too...he had dry cat food crumbs all over the place! And he used to have Cheerios until my last serious attack. Discovered his cereal dust all over, too. So, cat food goes out and we no longer bring any gluten food into the house ever again! It has taken me 4 months to get better and I am still not sure which discovery may have been the culprit. The rash is better, but I am still not back. I discovered the Gluten factor when I was 55 after contracting pneumonia and couldn't eat! I actually felt better! Well, hope these tips help someone. You all have helped me for a long time.

 

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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