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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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cait

Rotation Diet

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I'm working with a nutritionist due to ongoing fatigue and other symptoms after removing all of my obvious triggers. I've been gluten-free since May, and removed corn, soy, and dairy after doing an elimination diet this fall. Haven't trialed oats yet since I suspect it wouldn't go well. Was vegetarian until fall, when it became clear I needed to add in other protein sources, and still haven't added in red meat. Not sure I can go there yet, and not sure how my body would react since I haven't had red meat in about 20 years. In the last consult, my nutritionist suggested doing a rotation diet to keep me from developing issues with other foods. How likely is this? I'm not anxious to make food any more complicated than it already is, but obviously I don't want to add to the list of foods I can't tolerate. I was sort of hoping that over time I could add things in rather than taking more away. Any opinions/experiences?

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I agree with your nutritionist,Rotating foods especially while healing would be most helpful.At one point my safe food list was very ,very short <_<

With healing,I have over time been able to add back many foods and most others I can tolerate as long as I rotate them.

Rotating foods like nightshades,corn and legumes is the only way I can tolerate them.

I was vegan for most of my adult life.I started having issues with legumes and sea food was out of the question (because of my DH) so I also had to add meat sources of protein to my diet. I find that ground meats are much easier for me to swallow and digest than meats that are not ground.

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I've read that doing a rotation diet is a good idea as you can develop other food intolerances if you eat them regularly. I've thought about trying this diet but can't figure out how to make it work just preparing food for one person. Good for you for taking so many other things out of your diet besides gluten. I want to try that eventually.

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I am one who should have rotated but didn't. I lost many more foods than the gluten, soy and corn that I started with because of this, particularly when I quit nightshades for inflammatory reasons. Ate too many green beans and peas, and too much citrus. I am planning on trialling some of those foods this summer.

I ate out at a gluten free lunch prepared in a house normally occupied by gluten eaters (the house-sitter was hosting), and got zapped. I am still trying to figure if it was a hidden bad ingredient for me or if it was a gluten pan or utensil that got me. There was a 'mystery" quiche that might have been the problem and it makes me concerned about my planned trial :unsure:

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I am one who benefits from rotation. It is not a situation where you have to lose the foods you have now. You can keep all that you tolerate now AND add some back. There are templates/papers that you can fill in to help keep track, otherwise I could never if I didn't have it all written down.

I should have rotated sooner, but I didn't know about it. I lost SO many foods. I don't know that we all need to, but some of us do need rotation. You are lucky to have someone who will help you and work with you on it. It is not the easiest thing so it is good to have help. But I came to it with a considerable list of avoids to start with so I struggled emotionally. I put myself on one after my allergist told me he could do no more for me and I was miserable. But I am on the lookout for someone who can help me get back on one again because I think I still need to be. I developed a few more allergies and got overwhelmed and life got in the way and I dropped it. I'd do better if I could check in with someone from time to time.

I've been a veggie wannabe my whole life but I need the meat in my diet. I too do better with ground meats, poultry and fish. If you increase it slowly and consciously, you may do well. That's what I did. It really helped with my blood sugar, weight and overall well being. I still don't love it, but my body clearly works better with it so I made my peace with what forms I could tolerate.

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My daughter and I did the rotation diet with some foods. It is tough. The worst part is that other people don't understand it. They would make fun of is. They would say things like, "Is this a dairy day?" They couldn't understand why we could eat dairy on some days and not others. And why we couldn't make exceptions for holidays. In the end, we both realized that we were sneaking dairy on other days and we weren't getting sick from it.

That being said, I do try to give us as much variety as I can with our meals. I try not to make the same things too often in one week.

It's especially tough for me because I am one of those people who is content to eat the same things day after day. But I know that I can't do that.

When my daughter was diagnosed with the IgG peanut allergy, she switched to almond butter. Now she has an IgG allergy to almonds. So I do know first hand that it doesn't work to eat like I would.

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Sigh. You all make a good case for it. As soon as we figure out how to do it, I will. I won't like it though. So there!

This seems to be bringing up all of the rage I didn't have about giving up gluten and other foods as I discovered additional issues. I've already had to cut out so many of the things I liked that the idea of not being able to have the few things I do still enjoy whenever I want them makes me furious. And it's already so hard to eat that complicating it further just makes me want to cry. I'll get over it.

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...I've already had to cut out so many of the things I liked that the idea of not being able to have the few things I do still enjoy whenever I want them makes me furious. And it's already so hard to eat that complicating it further just makes me want to cry. I'll get over it.

A lot of us go through a grieving process (or 'rage' process, heh), especially when we start losing a lot more foods than just gluten. People who don't have to do that frequently don't 'get' it.

It's hard. It's something we will have to confront many times a day, on a daily basis, for as long as this lasts (some of it forever). And it affects social situations, our cooking, our tastes, our sense of comfort - it IS a loss of something that usually matters to us, so I really think it's perfectly justified to feel upset about it.

I know I had a few crying jags here and there over foods I had to stop eating, usually on a really crappy day. But they happen a lot less now (it's been a little over 2 years for me, now). I decided I would just learn to cook awesome food that didn't use these ingredients - uh, yeah, that still needs a little work, LOL. But it feels more hopeful now, at least, rather than overwhelming and upsetting.

Re: the rotation diet - I think a challenging part of it is that it's hard to tell if you need one until it's too late, and you've just lost a food. So the better safe than sorry schtick definitely applies. I went on a rotation diet, too, but had so many problems with foods and getting sick from them that I literally got down to a handful of foods I could eat. I ate the same foods, for every meal, for 8 months - never became allergic to a single one of them.

But then with some new foods I added from food families I had allergies in, I slowly became allergic to the entire food family. So the rotation diet wasn't needed for me for my basic foods, but perhaps if I had not been trying foods in that one family so frequently, I might have avoided increasing my allergies there. Just no way to tell, I don't think.

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My personal opinion (and perhaps experience, it's hard to say) is that if you react to a food in one food family, and then another food in that same family, it's best to cut out the whole family right away, and avoid aggravating your body with all the other family members. I think you will heal more quickly and possibly regain that family of foods more quickly (if you are going to be able to regain them, that is - some of them might be permanent :( ) I am hopeful of regaining legumes and citrus, and am going to try some frresh homegrown tomatoes this summer. I really miss potatotes and all the yummy dishes you can create with them, but they can wait..... they gave me hives, and tomatoes killed me in other ways so I didn't even test what eggplant did to me after that discovery. That's still to come sometime in the futuer. And when I do, it won't be more often than every 4-5 days.:)

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • 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. 
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