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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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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    • The stool and saliva test are not considered to be valid by mainstream medical.  Helpful tools, but again, not recognized by the GI Association.  You need to be on a gluten diet for 8 to 12 weeks prior and then ask your endo or PCP for a celiac blood panel.  KarenG gave you a link that explains the testing.   I certainly sounds like you should do the gluten challenge and get retested.   I am officially diagnosed, but my hubby is not.  He went Gluten Free per the poor advice of two medical doctors.  It worked though.  He saw enough improvement to make him adhere to the diet for 16 years.  He never cheats on the diet.  I need my diagnosis since I did not have GI issues at the time of my diagnosis.  I could not believe that both of us would have gluten issues. I hope you figure it out and your health improves!  
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