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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.

Two Questions About Going Grain-Free
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16 posts in this topic

Hi all, I have just spoken to my doctor/endocrinologist about my latest reaction to soy, and about my persistent bloating/gas, which still lingers in spite of my gluten-free diet.

She would like me to go totally grain-free and legume-free for about three weeks (basically primal, I guess, though she doesn't call it that way) because even if I do not seem to have celiac disease my bowels are still in a very sad place.

I feel very stupid asking this but do a) buckwheat and B) oat fiber both classify as "grain"? I usually use buckwheat flour in baking, and basically the only bread I've been eating is the Julian Bakery gluten-free Carb Zero bread (all the others they make contain millet, which I cannot have), and it is made with oat fiber (which I seem to understand is neither oat flour not oat bran).

Should I avoid those as well, if I need to be grainless?

EDITED TO ADD: that should have been GOING, obviously.

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Personally, I would classify those as grains. In the book "Primal Body, Primal Mind," the author makes note that buckwheat is one of the grains found to be most contaminated with gluten during processing. Many celiacs are completely unable to tolerate oats, and unless the oat fiber you're eating is specially certified as gluten free, I would assume that this might be bad for you, too.

It really isn't hard to go grainless (really!). Have some eggs and bacon or ham in the morning (have some fruit if you'd like), eat a big salad with tuna (the kind from Whole Foods or Trader Joe's; otherwise, it will contain soy) or chicken, and then have a nice big dinner without grains. If you need recipe ideas, you can always check out the free ones on www.marksdailyapple.com.

Good luck!

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I think the oat fiber is gluten-free, or at least states to be so. I should have specified that according to my blood tests I do not have celiac disease, but more likely a NCGS, which truly became a problem only after I moved to the US.

I have been going slowly grainless, so I think it shouldn't be that terrible, but I like baking and I was wondering if I am stuck with just coconut flour (almond is off the list already)...

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Can you have flax? I've seen a lot of grain free bread recipes that use that, in addition to coconut or nut flours. If you can tolerate other nuts besides almonds, you could also make your own nut flour out of walnuts or whatever by putting them in a food processor.

Personally, I've gone grain free and I don't really miss bread & baked goods much. I eat a lot of sweet potatoes and winter squash to satisfy carb/startch cravings.

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Buckwheat is actually a seed, but if that is what you are reacting to, it proves the undeniable point that if your body doesn't like it, you'll know it. I second the notion of the food diary.

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I am avoiding flax and almonds and sweet potatoes, which is not a big deal, because potatoes were never really big in my diet. That's because of my thyroid issues. I haven't tested flaxseed since developing the disease, but I do go hypo from almonds (soy instead seems to make me hyper-like - tachycardic and manic - and totally messes up with my bowel).

But I am sending a daily food diary to my doctor, and I am tempted to experiment with chestnut flour. I think it would be great in desserts, and would basically require no sugar because it tastes naturally very sweet.

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Grain and legume free is based on removing foods with high lectin. Dairy, Nuts & Seeds can all have similar effect on the healing gut.

Julian also makes bread with coconut flour or almond flour - but I'd suggest making a muffin type bread with coconut flour or almond flour if you can tolerate them soon.

Remember - removing all these foods is not for good. Be sure to trial them every six months.

Make sure your legume list includes peas! I can't eat any legumes: soy, peanuts, all beans and peas.

Hang in there - I've found removing these other foods much easier than just removing gluten :)

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Some of the seeds which typically function like grains in food include amaranth, buckwheat, and quinoa. I agree that buckwheat is almost always contaminated. I've reacted to just about every brand of buckwheat flour and whole groats I've tried with the exception of one. The only truly safe buckwheat flour I know of is from a company that grows, mills, and packages it themselves, in a dedicated facility. They only grow buckwheat, so the chance of contamination is about as low as it gets. Their flour is sold in some stores, or you can order from them directly. Their website is www.ployes.com.

Incidentally, buckwheat is related to rhubarb.

As for the oat fiber, even if it's gluten-free, many who are sensitive to wheat gluten are also sensitive to that of oats.

All of what are classified as "true" grains are in the grass family. BTW, sugar cane is in the grass family too.

Coconut flour doesn't function so well in breads, especially on it's own. It is often accompanied by eggs, which helps to hold things together.

If you're still exploring what foods you can/cannot eat, it may be wise to avoid all top allergens until you can eliminate the culprits. Besides wheat, there's dairy, eggs, corn, soy, tree nuts, peanuts, and shellfish. Some other countries have defined slightly different lists.

If you're avoiding all legumes and every single derivatives thereof, that would include coffee, cocoa/chocolate, guar gum, mesquite, and even vanilla. Just how far you have to take it depends on your own body. No one else can define the limits for you.

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Agree about the buckwheat, the only buckwheat I don't react to (knock on wood) is one brand, Pocono, which I then take the plain "cereal" and grind myself in a coffee grinder.

The ingredients for the Julian zero carb bread are water, gluten free oat fiber, egg white, psyllium, olive oil, apple cider vinegar, baking soda. There is no way a beginning gluten free person should be eating that. It does not matter if it is oat fiber and not oat protein, it is still oats, and a certain percentage of celiacs still react to glutenfree oats as if they were the triticum (wheat) family of grains. This is why a small percentage of people have such a problem with the Bob's Red Mill brand. If you're a potential oat reactor, try to find ingredients that are not processed in the same facility as oats.

I was also in a sad place with no ready explanation last fall, until I stopped using things that were processed in the same facility as "gluten free" oats, which happily got rid of some mysterious symptoms. Find a clean buckwheat source, and get the oats and oat trace cross contamination out of your diet, and that may be the solution to your problems.

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Wow, thanks for your responses everybody!

I am completing my first grain-free day... we'll see how it goes. One thing I noticed is that I am much calmer, and my heart is not as racing as it normally would be. I am limiting myself to certified gluten-free coconut and chestnut flours right now.

Dairy doesn't seem to bother me right now. It really only bothered me as a baby, and never afterwards. Legumes (beans especially) were off limits for several years, maybe almost 10, between the age of 15 and 25 or so. I had some violent reactions to black beans, with fever, serious GI symptoms. I simply could not digest them at all. I gradually reintroduced them later, but never managed to fully enjoy them ever again. Still, my doctor seems more worried about grains than legumes. Coffee and cocoa seem not to be an issue for now, but I don't have tons of them.

GottaSky, thank you for reminding me this is not forever! :)

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:)
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:) gee, apologies for misspelling your name, Gottaski! I must have worked on one student's essay too much tonight.

I'm trying to stay positive and see this as a chance to develop new recipes. If anything comes out nice, I'll post it here!

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No worries...my name is Lisa so I answer to any form of either name. Hey...make sure you ask if you are craving something...those of us on more limited diets can usually help.

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Thank you, Lisa! Let me say that this is an amazingly supportive board. I usually only crave very dark chocolate, 90% and up for me, tnx. And butternut squash (weird, I know. I once got up at 1 AM to buy and cook one because my mum had told me she had one for dinner). Only when I am sad I miss cookies :unsure: mmm... macaroons...

Mostly, however, I find it very difficult to A) dine at friends', because I feel embarrassed that I have so many restrictions, and B) having to look up any darn label and basically being unable to eat anything not cooked from scratch by myself. But I know most people here are worse off than I am, so I can't really complain. At least I don't seem to have to worry about CC.

I think that if only I had a functioning stove right now I would be less whiny: I used to bake everything on my own, and (please allow me to brag) I was one amazing baker, being forced out of lots of my habits all at once is very frustrating.

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hmmm....

butternut squash fries --- sliced really thin --- in a toaster oven????

And fortunately your "mostly" items will absolutely improve with time - I promise.

  • The reasons I BYO roll right of my tongue - I tend to stick to I am so happy to be out with friends that what I eat isn't a concern to me, so it shouldn't be to you...shall we order another glass of wine?
  • Labels -- they are tough -- focus on whole foods -- no labels to add frustration.

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THE OVEN WORKS!!!!!

(sorry, I shouldn't scream, but this will make my life SO much easier, and probably healthier!)

Thanks for your support. I usually try to eat whole foods, it's just when I am craving something crunchy and aromatic that I shoot myself in the food and buy prepared stuff, which I can otherwise make myself; my previous roommate (and others) used to make fun of me because I eat "like a rabbit" and my fridge is always stocked with produce... though I guess that makes me a carnivorous rabbit, which is pretty scary :lol:

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