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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.

Question For Those Who Are Grain Free
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21 posts in this topic

I am going grain free because of symptoms not resolving. I am very allergic to corn and now I am suspecting rice. I am not sure if the rice is CC with corn from the enrichment or cleaning process or what but I do know that I am reacting.

Those of you who are grain free, why did you go grain free and did it help?

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When I went gluten free a year and a half ago, my diarrhea improved significantly. However, a year later, I still had problems

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The gluten-free grains were not working for me. Some quinoa products gave me horrible stomach pains, which I subsequently learned was probably due to the saponin coating and it not being thoroughly rinsed off. The rice breads and pastas were ok but made me feel groggy after eating, which I think was due to high carb high glycemic content and the resulting insulin spike. Research and this board led me to the paleo diet and after reading Cordain's book I decided to give it a try. I am about 5 months in and feeling great, my numbers on my last comprehensive metabolic panel and lipids were all solidly in the normal range. Even lost my "spare tire". Very labor intensive though. It seems I am always in the kitchen either washing vegetables or chopping or cooking or washing dishes (or eating). Good luck.

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I went grain free about 3 wks ago as an experiment to try and eliminate some overall inflammation and heal a leaky gut.

So far, my stomach/intestinal issues seem to have subsided.

I am losing weight.

Having less intense cravings for junk food.

And my adult acne has cleared up.

Feeling pretty good and may continue eating this way. I went gluten free about 15 months ago after being dx celiac. Casein free about 2 months ago when I noticed it affected my acne. Now eating "primal" so no grains, sugar or legumes.

Before I would have thought I would starve to death, but I am learning there is all kinds of healthy, non-inflammatory foods that I had ignored for years!

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I am going grain free because of symptoms not resolving. I am very allergic to corn and now I am suspecting rice. I am not sure if the rice is CC with corn from the enrichment or cleaning process or what but I do know that I am reacting.

Those of you who are grain free, why did you go grain free and did it help?

When I initially went gluten-free I was fine with other grains (rice, corn, millet) and pseudograins (quinoa, buckwheat, amaranth). However, after a CC issue a few years ago, even after eliminating all sources of gluten, I could not gain weight and still felt overall very fatigued and ill. Eliminating grains (and other problematic foods) has resulted in a complete turn-around in my health.

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I've been grain/dairy/legumes/sugar/alcohol free too. Felt really great and was never hungry. But sfter losing 14kg/30lbs, I had to stop, can't afford to lose any more weight.

Does anyone know a way to be on this diet and not lose weight? I really would love to go back on it.

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After cutting all grain:

I sensed that my energy level increased. My mood is better, atleast when I am not having withdrawl symptoms. I feel strong. Some numbness I had might be going away. My gums are toughening. I believe I am losing edema. My body feels firm instead of sqishy. I am losing inches in my abdomen, but maybe not losing much weight. I recommend trying it. One can use almond and coconut flour. I found information about it on the Gluten Free Society website.

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I've been grain/dairy/legumes/sugar/alcohol free too. Felt really great and was never hungry. But sfter losing 14kg/30lbs, I had to stop, can't afford to lose any more weight.

Does anyone know a way to be on this diet and not lose weight? I really would love to go back on it.

Even eating rice (my only grain), I have been losing weight like crazy. Now that I'm where I want to be, I have started eating more ice cream (!) to try to stop the weight loss. I know you can't do that because you are off sugar. I think the only way to stop losing for you would be to eat more meat. I have done that too, and between ice cream for breakfast (Now THERE'S something worth getting out of bed for!) and some homegrown beef I got from a local rancher, I have stayed at 133 pounds for a month now.

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After a year gluten free, I had lost the massive improvement I'd experienced when first gluten-free, and was going downhill. We're doing a slightly less strict version of the Whole 30 diet, so no sugar, grains, legumes, or alcohol (I didn't drink anyway, so that part is easy at least). I was miserable for the first week or so, but then my energy picked up, and I'm definitely experiencing improvement. I hate it because I just don't like meat that much, it's pretty limiting (but I'm also doing a rotation diet along with it, so that adds to the limiting), and I miss chocolate. But I feel better, so I'm sticking to it and hoping that at some point I'll be able to add other things back in.

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It helped me. I can't really say when since it's been a continuous process with some grain here and there.

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I went grain free because eating anything containing grains was making me very sick, for various reasons. I had to avoid other foods, too, but I have tried to reintroduce grains a few times, very carefully sourced, and it still makes me sick again.

I'm growing some in my garden to see if small amounts of homegrown grains might do all right.

If I don't keep grains out of my diet, my body goes wacko. With corn I get constipation with rapid weight gain (10 pounds in a week kind of gain). I get severe insomnia, anger and anxiety problems and joint pain. With the other grains, I get diarrhea with weight loss, and then all the other issues I get with corn, but lesser in severity, IMO.

These symptoms with grain have, I think, always been there, but they've grown worse since going gluten free. So going grain free has had a very positive affect on my health.

Does anyone know a way to be on this diet and not lose weight? I really would love to go back on it.

I'm not sure, to be honest, but I know what worked for me:

First, I got tested for other allergies via testing and an elimination diet. Grains make me lose weight rapidly, but it turns out a couple of allergens - which I didn't even know I was allergic to because I don't get hives - make me lose weight like crazy, too. When I stop eating the allergen, I stopped losing weight. When I ate grains, they could keep this weight loss at bay, so the loss was more noticeable when I went off of them.

The second thing was to keep track of my calories and nutrients. For nutrients, there were those that grains are fortified with that I had to make sure I was getting somewhere else. And as for calories, eating enough calories to maintain my weight was easy to do with grains, but without grains, I had to pay attention more. In fact, I had to ignore most of the dietary advice floating around for proper health.

I needed more red meat and more oils and fats. Without eating enough meat, I would feel progressively worse - I couldn't get access to much meat at one point for just a week or two and I felt SO terrible. My weight drops when I don't get enough and I start to feel weak.

I'm dairy and egg free, too, so meat is my main source of calories, proteins, and fats. When I started introducing other carbs, like potatoes, that didn't make as much of a difference in my weight as making sure I got enough meat. It's been a real change, because I was never a big meat eater, ever. And now, I eat a ton of it.

Another aspect is that without grains to complete the partial proteins of my legumes, I had to either eat meat as my sole protein source, or to make sure I was getting a complete amino acid 'protein' from nuts and seeds combined with my legumes. It was difficult eating and affording the quantity of nuts and seeds required to make this work for beans very often. I still do it periodically, but meat is cheaper and easier, frankly.

I don't know that this is what would work for everyone, honestly. I don't have any cholesterol problems, nor any heart disease or high-cholesterol running in my family. That might make this harder to do, you know? But it made a difference for me. :-)

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I tried GAPS, which is grain-free. GAPS didn't work out very well because I'm sensitive to the sauerkraut (oops) but I learned that I do well eating low-starch. I find I'm more tired if I eat a lot of starchy food. I seem to do best with no more than 1/3c of cooked rice or 1/2 a small potato worth of starch about once a day. More than that leaves me sleepy and oddly enough makes my asthma worse; I suspect it just leads to some general inflammation.

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I went gluten-free and was doing well on other grains. Within one month, I began having symptoms of glutening, only they came from gluten free grains. I do not believe it was CC.

My 'dear diary' and elimination/reintroduction diet showed me that my body HATED corn and soy. Rice was iffy.

So I quit all grains, and all forms of them. Even sweet corn! Also checking any supplements for them (which really cuts out a lot of them!)

I have not lost an ounce by not having grains.

I have lost a few inches of inflammation in my stomach (swelling). Yet scales have not moved.

However, I don't have gastric disturbances any more either.

I was fairly low carb and very little processed foods before going gluten-free, so my body didn't have the 'shake up' of suddenly not having carbs and then dropping weight.

I won't even try to reincorporate grains into my diet. I don't miss them enough to bother.

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I've been grain/dairy/legumes/sugar/alcohol free too. Felt really great and was never hungry. But sfter losing 14kg/30lbs, I had to stop, can't afford to lose any more weight.

Does anyone know a way to be on this diet and not lose weight? I really would love to go back on it.

Have you tried eating more healthy fats? Coconut oil, eggs with the yolk, nuts, olive oil, avocados, oily fish, and seeds are all healthy can help keep weight on. I don't skim fat off soups/stews either, making them richer. Fruit can help add some more slowly metabolized carbs.

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Have you tried eating more healthy fats? Coconut oil, eggs with the yolk, nuts, olive oil, avocados, oily fish, and seeds are all healthy can help keep weight on. I don't skim fat off soups/stews either, making them richer. Fruit can help add some more slowly metabolized carbs.

I use coconut oil whenever possible; for stir frying use palm-oil and for salads virgen olive oil. I love Tilapia and Panga fish, great Thai recipes out there, but these are river fish. Love river prawn too. My DH indicates not to overdo on iodine-rich (=sea) products, although have never tested it. The smell of iodine turns me off, which I see as a body warning sign.

A lot of animal fat and huge amounts of meat are not an option now, my celiac symptoms indicate that my ileum (last part of small intestine) is not working well. One of them is that my bile acid is not recycled properly, damaging my colon (psyllium fiber helps greatly in protecting my colon though).

When I was on the Paleo diet before, I did eat more meat; fish and eggs than usual, but would get nausea and flatulent when overdoing it.

The weight loss was welcome, until I got to the point that continuing on Paleo would turn me into underweight and sadly had to decide to stop.

Besides the gluten and dairy intolerance, I don't have any other food intolerance or allergies. I take vitamin/mineral supplements and get B12 injections. Blood analysis showed that everything is OK there.

I guess I just need to wait until my villi are sufficiently restored; my food is better digested and I gain some weight, before I can go back on the Paleo diet again.

Have only been gluten free for 2,5 months since my dx.

Thanks for the help.

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I am thinking about trying this out. I'm not sure if I'm being overly paranoid, but it seems like any grain I eat I react to (pregnant-esque bloat, gurgly stomach..). I believe I have a leaky gut & I'd rather go grain-free now than develop more food intolerances.. hard though, because I am such a carb/baked goods kinda girl. Well, I was, I guess.

Glad to hear we can use coconut & nut flours! Guess I'm going to have to get back into baking.

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I too am going to try grain free. I have been gluten free for about 6 months now. I was doing very well but tended to lean on rice and corn. I've started feeling horrible again... fatigued, major D, achy joints, eyesight going wonky... So after doing some reading I'm beginning to suspect I need to just stay away from all grains. I'm so tired of being tired :D

Cory

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I have been grain free about 6 months. I did go through withdrawl symptoms all over again after going from classic gluten free to grain free. I am enjoying the food I eat. I use buckwheat and bean flours besides what you mention above. I hope it will help you. I am going with the idea that I should cut out as much suspicious things as possible at first. I hope to get some back later.

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I've been grain/dairy/legumes/sugar/alcohol free too. Felt really great and was never hungry. But sfter losing 14kg/30lbs, I had to stop, can't afford to lose any more weight.

Does anyone know a way to be on this diet and not lose weight? I really would love to go back on it.

Hi there, I lost weight too (20lbs in 4 months) on the paleo diet. Bananas were about the only thing that helped (large amounts of sesame oil, bacon, etc had no effect on my weight). After about 6 months I slowly added in some dairy (ice cream is suppsed to be more easily digestible, for some reason), potatoes, and finally gluten free grains. I think being off that stuff let my body heal so it could absorb it again. Cultured butter might be useful - not paleo but easy to digest.

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If I may update? I posted in June. I have been gluten-free since early February 2012, grain free since March. I have not been accidently glutened onceI But by corn, yes, many times. I also gain about 10 lbs (of fluid and inflammation) within a few days of corn exposure (and it can be as teeny of an amount as in a vitamin pill).

I hadn't lost weight in June, but since then, I have lost 34 lbs.

Grain free, dairy free.

I eat lots of coconut oil and eggs. I sometimes don't feel hungry, and I know I am way below the calories I should eat in a day, so I will add extra coconut oil to make up my calories.

It has seemed to work!

I just wanted to feel better, even though I needed to lose weight, I'd given up trying. Yet it just melted away. I am normal range body fat for the first time since I was 26! (I'm 51)

I won't ever even try to add them back to my diet. I see no need ....

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To the OP: I still need to read everyone's responses, but here are my reasons. I went paleo (grain free) because I knew I could still feel a little bit better. I've really learned to listen to my body as a result of being sick for so long, then healing myself with my diet. Personally I found that I do better with some white rice and white potatoes because very low carb was extremely hard on my body. But I know there are other ways to get carbs if that's an issue and you want to stay paleo. For me: arthritis=gone, I have more energy, NO stomach issues, clearer head. It took about 18 months to realize that I cannot handle any cereal grains. I just feel so much better now.

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    • Hi All, I just got back from my first visit to Montreal in a couple years, and had to report back. STUFF IS HAPPENING THERE!

      One word: Croissant.
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    • Hi ScarlettsDad, Sorry such a slow reply to this, but I also live in Toronto and definitely have a few safe suggestions. Of course, my tastes and your 5-year-olds are probably quite different, but I've got a few we might all agree on. First of all, as a general rule: don't order the gluten-free pizza/pasta anywhere unless the kitchen can prove they use dedicated equipment to prepare and cook it: fresh water for pasta, separate prep area and oven or other protective measures for pizza. Any place with flour flying around on a regular basis is going to be a real gamble no matter how careful the staff are. Anyway, here are a few Celiac safe and kid-friendly spots:

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    • Walmart brand great value is what we use. Ingredients: Ingredients: Nonfat Dry Milk, Vitamin A Palmitate, Vitamin D3
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