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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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beadlavada

Rotation Diet

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I have a rather storied medical history, the Reader’s Digest version being that I was confirmed via biopsy as having mitochondrial disease (adult onset). Because a significant portion of my symptoms are systemic and GI-related (multiple dietary intolerances), I recently began to suspect that my issue began in the GI tract and could be fixed.

I have been following a strict rotation diet since March 1st. I avoid: gluten, corn, soy, dairy, nuts, beef, egg, ground meat (any), pork, sweet potato, rice, tomato, peach, and pear. I started avoiding gluten two years ago, and the other intolerances have just crept up over time. For the first 2 weeks of the rotation diet I also avoided fruit, suspecting candida, but I had a VERY hard time. Headaches, blood sugar dropping to the 60s, irritable, etc. Now, I am eating fruit in the AM or on an empty stomach, but I have avoided grains this whole time.

My energy levels have improved. I am doing significantly better than I was, on average, 2 months ago (when they were suspecting epilepsy and hospitalizing me), but I would think that if I had removed all trigger foods and was rotating, I would be symptom-free by now, right? Everything, and I do mean EVERYTHING I put into my mouth causes a reaction. Even plain, whole foods. Nausea, headaches, fatigue, heavy eyes, etc. It’s ridiculous. I hate food. I just wanted to be TPN’d at this point. I am SO over this nonsense.

Supplement-wise, I am taking Metagenics probiotic (60 billion organisms), L-glutamine powder (1 tsp), Magnesium, and Zinlori (zinc supplement) to try to heal my leaky gut. My functional MD has suggested a CDSA (comprehensive stool panel) down the road (very expensive and I am on disability) and a DMSA test to look for heavy metal toxicity.

I’m frustrated. Really. Frustrated. I’m exhausted and wondering just how long this is supposed to take and how we will ever figure out what’s really going on. Any input is appreciated.

Have you tried an elimination diet??? Strictly eliminating foods you are intolerance to for a period of time will allow the gut to heal. Once some healing has taken place slowly reintroduce foods and rotating them will allow healing to continue .

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I don't understand how an elimination diet would be different from what I'm doing. I'm already avoiding the foods with known intolerances and avoiding the others as they bother me. Is there another method I'm not aware of?

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My daughter is going through similar issues and wondering if you came to a head with your health problems. Any suggestions that have helped you that you can recommend? I hope you are doing better than when you last posted. :-)

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I found this great site on rotation diet http://www.food-allergy.org/rotation.html

It talks about how with leaky gut, if you eat the same safe foods all the time, you could develope more reactions.

"When you first start a rotation diet, you may have to modify the diet based on your reactions. If you find that you are reacting to foods that you previously did not suspect to be problems, eliminate these foods from your diet, at least temporarily, and replace their food families with others from the “extra foods” section. This situation is sometimes called “unmasking” because on a rotation diet the days off from a certain food allow your level of antibodies to that food to decrease. Then when you eat the food again several days later, there no longer are “masking” antibodies to camouflage your reaction to the food.

Your health is important to all of the members of your family, so take the time to make some special treats for yourself as well as for other family members. For example, make yourself a large batch of “special” pizza and freeze some. Then the next time your family or friends decide to order pizza, you will be prepared with a pizza you can eat. Freeze portions of allowable desserts for each day of your rotation cycle. When there is a birthday party or when others are having a treat, pull your dessert out of the freezer and join the celebration.

Variety is important for “mental health” as well as for nutritional reasons. It is especially important for children. Although they will be eating the same combination of foods every fourth or fifth day, these foods should be in different forms so that they don’t get tired of what they are eating. Often, changing a recipe very slightly and calling it by a different name will improve a child’s attitude toward that food.

If you eat out or travel, you may find it difficult to stay on rotation. It is better to eat a food to which you are not allergic but which you just had yesterday than to choose a food to which you are allergic. This advice also applies in other situations. For example, in the pizza illustration above, it would be better to eat your special pizza from the freezer even if it is made with the same grain you ate yesterday than to eat the “normal” pizza. "

I had leaky gut when I first came about my gluten problems and here is my two cents. First no gluten ever! And I mean not even the smallest cross contamination. Look at everything you eat or cook with. MSG is bad for me and most with gut problems. Butter seems to give me a cross reaction and is another I avoid with a passion. Replacing it with olive oil has been a turning point for me. Get vitamin testing, I take a b complex and its amazing how taking the vitamins you need can help you feel better. Probiotics are a must. Probiotics can be hard on your body at first and I started of taking a low dose for a few days then stopping for a few more days to give my body a rest. Then I could take the normal dose. When I had a leaky gut and an inflamed gut, my whole body was out of whack. I would react and could not trace back to something obvious. My stomach was very sensitive to spices, sugar, fats, tomatoes and others. I think I got some food poisoning a few times that was rough. I had to eat every few hours or I would get weak and faint feeling. I still bring food with me where ever I go and drink lots of good filtered water. Sometimes after alot of D, I also put a pinch of sea salt and few pinches of sugar in my water cup to help it absorb better.

I also would make sure the vitamins you are taking are not hurting you more than helping. I might try a elimination diet of your supplements and make sure they are ok. I also gave up my caffine habit which has helped some as well. Also, watch how much sugars you eat and how. Sugars and carbs digest faster and spike your blood sugars and stimulate your digestion. Your diet has to be balanced, you need fat, you need protein, you need vitamins and minerals from whole food sources. I'm about two years in and remember what I call good days and bad days. It was a roller coaster ride. On bad days it sometimes seemed better to not eat at all. On bad days its better to eat plain simple foods like rice or risoto. I thought I was reacting to potatoes but realized it was the butter they were fryed in.

Search this site for foods that heal, or anti inflammation diet for more good info.

Good luck it does get better. You must maintain a clean diet that is all your own. Start a food diary and become aware of what you eat and what your body is telling you. Find a doctor that is willing to listen and is knowledgeable in your own unique circumstances. Take care of yourself. Get lots of sleep, decrease stress, slow down, and take a epson salt bath.

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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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