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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

A Diet Without Grains?
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13 posts in this topic

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Lockheed    1

I am not a fan of eliminating a whole food group from your diet, but I'm seriously beginning to wonder if I would feel better if I just avoided grains entirely. I have celiac's so no wheat rye barley. I also react to oats, amaranth, millet and spelt. I recently seem to be having issues with rice also. I thought for a long time maybe I just needed more excercise and more water - although that helps me on the physical fitness spectrum, it doesn't help the severe digestive issues I'm having. Has anyone else eliminated all grains? How do I do that safely? Is there some research out there about this? Or am I just crazy?

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Katie B    13

Hi Lockheed - check out the Specific Carbohydrate Diet. I'm on the low FODMAP diet at the moment and am limiting my carbs per serving and spacing them out...

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srall    112

There are a lot of people here on a no grains diet. I'm on week 3 or 4 right now. I'm not keeping track. Initially I was going to test it for 6 weeks, but after the first week, after the INTENSE cravings died off, I realized this would be permanent. I had some residual issues, mostly joint pain that must wouldn't resolve just (wheat) gluten free. I blamed coffee, wine and night shades. Well, I've been drinking coffee with cream, drinking wine (not everyday) and eating tons of potatoes with my morning eggs and I have ZERO joint pain. None. Nada. Zip.

I'm not doing a specific diet. I'm trying to eat very balanced and make sure I'm getting a lot of fruit to make up for the carbs. I do notice when I over eat fruit I don't feel well. I feel the best with a piece of meat and a veggie. But I already knew this.

I think it's worth trying for a month or so. I waited for spring because our winter was so harsh I didn't have the resolve to start something new. Plus I knew it would mean a lot of trips to the grocery store. I will repeat, the first week was almost unbearable. I could not believe the cravings for carbs (muffins, oats etc) would go away. I was preparing for 6 weeks of cravings. But within two weeks they were over. I think you'd get a lot of support here if you tried it.

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Spelt is a type of wheat, so you'd definitely react to that. You might also be reacting to cross-contamination during harvesting. A lot of the grains on the market are at risk of being contaminated, so you may just need to switch brands. If you're early in the diet, you might simply be having problems digesting grains, which should pass as you heal.

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sb2178    100

Millet particularly often has high contamination levels.

Oats cause reactions among a portion of celiac patients.

I second eliminating, then reintroducing in limited amounts. Sweet potatoes and such can substitute for carbs. Soaking grains overnight also helps digestion in some folks.

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Lockheed    1

I'm sorry, I should be more clear. These are items I eliminated from my diet 8 years ago. I've been gluten-free for a while and I really pay attention to being gluten-free. But really.. I think I'm starting to have an issue with rice... like the same kind of issue I have when I get something with gluten. And it doesn't seem to matter the brand or type or source. And I'm thinking if I add rice to the long list of grains that I already can't have.. then perhaps I should consider eliminating all the grains together. Maybe I just can't tolerate grains. And I really don't miss the illness that came with eating most carbs. I do miss fast food french fries (the cross contamination on those has gotten to be enough in the last couple of years to set me off).

Further, I've always wondered about the celiac's diagnosis. I don't present with the leaky gut syndrome or the immediate severe illness that occurs for the tradiational celiac model. My reaction is the exact opposite - everything just stops functioning including me. So maybe the end result is the same as a traditional celiac in that we both have severely damaged intestines and malnutrition resulting from not absorbing vitamins and nutrients, but maybe it's not really the gluten that I'm having the issue to. Maybe it's something broader that includes glutens?

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Lockheed    1

Hi Lockheed - check out the Specific Carbohydrate Diet. I'm on the low FODMAP diet at the moment and am limiting my carbs per serving and spacing them out...

Okay so somehow naturally I'm really close to a low FODMAP diet and those foods don't seem to give me an issue. I'm going to look into it further. Thanks for recommending!

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Pyro    1

I've read that celiac covers all grains and the gluten diagnosis has been a mistake. Remember that quinoa and buckwheat aren't grains.

BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

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Woolygimp    1

I've read that celiac covers all grains and the gluten diagnosis has been a mistake. Remember that quinoa and buckwheat aren't grains.

BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

I've started eating grain free because I have Sjogrens (an autoimmune condition) and celiac disease. After over two years on a gluten free diet I wasn't getting better...

Eating grain/dairy free has really been a big improvement for me, I feel like I have a lot more energy, my Sjogrens has died down a lot, and I feel much less inflamed.

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Grain free wasn't hard for me. It was hard to feel full, though. Grains give you that bulk feel in your stomach. I recently reintroduced white rice and although I feel full, my C has returned - not as bad as when I had a lot of different grains in my diet, though. Thinking I need to go grain-free again. Bummer.

I was on a strict SCD diet for a year and now I eat a much less restrictive diet, but mostly whole foods. SCD doesn't restrict from NO carbs, just complex carbs that are harder to digest.

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cassP    175

I'm sorry, I should be more clear. These are items I eliminated from my diet 8 years ago. I've been gluten-free for a while and I really pay attention to being gluten-free. But really.. I think I'm starting to have an issue with rice... like the same kind of issue I have when I get something with gluten. And it doesn't seem to matter the brand or type or source. And I'm thinking if I add rice to the long list of grains that I already can't have.. then perhaps I should consider eliminating all the grains together. Maybe I just can't tolerate grains. And I really don't miss the illness that came with eating most carbs. I do miss fast food french fries (the cross contamination on those has gotten to be enough in the last couple of years to set me off).

Further, I've always wondered about the celiac's diagnosis. I don't present with the leaky gut syndrome or the immediate severe illness that occurs for the tradiational celiac model. My reaction is the exact opposite - everything just stops functioning including me. So maybe the end result is the same as a traditional celiac in that we both have severely damaged intestines and malnutrition resulting from not absorbing vitamins and nutrients, but maybe it's not really the gluten that I'm having the issue to. Maybe it's something broader that includes glutens?

you might want to test out the rice. ie: some fodmap lists include brown rice as being problematic. maybe you should see if you react differently to brown or white rice. i too feel much much better if i avoid all grains in my diet- but if i have basmati white rice 2x a week i feel just as fine.

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I eat a low grain diet. I also avoid regular potatoes. For me, it's not because I react to them (besides gluten ones of course) but because I need to keep my carb intake really low to manage my insulin resistance.

BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

I do find this balance tricky sometimes. I discussed what I eat with a dietitian and she thinks so long as as I eat fruit and drink milk (I have lactose free milk) then I'm getting enough carbs. But I do have to watch it, especially if I'm being particularly active.

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