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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.

Nail In The Quinoa Coffin
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17 posts in this topic

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Pegleg84    50

Argh! Quinoa strikes again!

At least I think so. On saturday, after having cooked for myself for a week, I had some squash and carrot soup, and a small amount of quinoa salad, both of which had been gotten from a good source. I had less than a handful of the salad, which did also have a small amount of feta in it which I avoided as much as possible (so it could be the milk I reacted to instead).

This was at lunch. I was fine all afternoon, all evening (though tipsy after a bottle of wine). Slept a couple hours and woke up feeling nauseous. Took some advil, ginger, drank lots of water. Ended up on the toilet and bam. really hard C followed immediately by awful D. Worst I've had in a while. Pains in my side. I'm just glad I didn't wake my bf with my wimpering. The undigested remains contained a lot of whole quinoa.

The last time I ate a small amount of quinoa I did ok (or at least didn't react until much later. I also remembered to take a digestive enzyme that time. this time I did not). The last time I had a large amount (bowl-full) it nearly killed me! which is why I'm avoiding it.

It's always possible that there was gluten cc, but this didn't feel like my usual gluten reaction. It could have been the small amount of dairy. But being that it was similar (if not as long or intense) as my quinoa incident, I'm pointing the finger.

Anyway, I think that's it for the quinoa. With all the research being done on it, showing that some strains may contain trace gluten, and that its not the easiest thing to digest anyway, I think it's safer to stay away.

Also, do you find you can tell the difference between reactions to different foods? I know that's different for everyone, but can you tell it was this and not that?

Oh Quinoa, you're just too good for me...

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GottaSki    459

I can't eat quinoa :( well heck, I can't eat much of anything so I may not be the best guinea pig to compare yourself to.

Quinoa provides me a similar, not identical reaction to that of my gluten reaction.

And yes, I can tell the difference between gluten and other intolerance reactions. Many include bloating, but gluten has it's own quirks and generally lasts much longer.

Edited to clarify - I do not believe any quinoa I ate was ever contaminated with gluten - I do believe the lectin content of quinoa is the reason for my sensitivity to it.

Edited by GottaSki

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IrishHeart    1,634

Just throwing this out there but, isn't it entirely possible the wine did it? "slightly tipsy after a bottle of wine" and you wake up nauseous? All the symptoms you describe ----sound like me after too much red wine.

It's not gluten..

But yes, maybe you are intolerant of quinoa.

The truth is, trying to figure out a food intolerance when we eat a variety of foods in one day PLUS a lot of wine, well. that's not really a good

baseline to work from.

Take one day (a day you will be home all day) and just eat quinoa for breakfast --- cooked in water and nothing on it---and see what happens.. That's the ONLY way you'll know.

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Juliebove    93

I do have different reactions to different foods. That is how a dairy reaction is for me. An egg reaction is usually more delayed and so violent that I have vowed never to eat anything that might even be cc with egg. Other things give me an itchy throat or nose or a rash.

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SensitiveMe    9

I am thinking perhaps the quinoa you ate was not rinsed enough. If the saponins on it are not rinsed off adequately they will cause a laxative effect.

And quinoa itself is high fiber. So I wouldn't recommend ever eating a large bowl of it. It has been believed to work as a prebiotic which can tone your colon.

Quinoa is not a true grain...it is classified as a member of the goosefoot family and related to beets, spinach and chard.

I always rinse the quinoa well even if it says it is prerinsed. I doubt anyone on here eats quinoa more frequently than me...it is one of the few things I can tolerate.

I usually eat quinoa flakes as a hot cereal everyday. The flakes do not have to be rinsed and it is quick and easy and supposedly more digestible. I put 1/3 cup quinoa flakes in a bowl add a cup of water and microwave for 2 and I/2 minutes. Then I add brown sugar and maple syrup to it. It will thicken on standing.

I eat the regular quinoa that needs to be rinsed for dinner most nights. But I probably don't eat more than a third of a cup at the most...it is too much fiber at one time.

If you want the health benefits of quinoa you might try the flakes. I always buy Ancient Harvest organic quinoa flakes. They are marked glutenfree. There are also recipes on the back of the box for making quinoa cookies and banana quinoa muffins.

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cahill    189

I just recently bought quinoa to try again. The first time I tried it I was fairly new to gluten free and still quite ill . I did not react well. I am hopeful that since I have had quite a bit of healing occur that I will be able to tolerate quinoa now.

I am ( nearly ) vegetarian again and have eliminated all grains ( except rice) from my diet. Being able to add quinoa to my diet would be ( nutritionally ) beneficial . So I am going to try adding it back.

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IrishHeart    1,634

I agree with Sensitive Me...maybe you guys could try the quinoa flakes as a morning cereal. Yummy with a bit of maple syrup.

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Pegleg84    50

Thanks guys

My reactions are likely more related to the saponins/lectins/fibre content of quinoa. I did not make the stuff I ate on saturday, so don't know how much it was rinsed. So, if more than a cup kills me (worst pain I'd had in a rather long time), and a 1/4 cup causes horrid D, yeah, best to stay away.

I did consider the wine when I woke up feeling all nauseous, but after sitting on the toilet for 15-20 min, I knew it was something I ate.

I have had bread and other things with quinoa in them, and have done ok, so it could be more of a problem with the whole grain/seed (I can't digest brown rice very well either). Quinoa flakes might be ok.

The quinoa/gluten thing comes out of some recent research that found at least 4 strains have detectable (though very low) amounts. But that aside, quinoa's natural defences are bad enough. I will trial this again when I'm feeling up to it (and have all day to feel miserable), but in the meantime, none for me.

Peg

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SensitiveMe    9

I think your body is the best judge of what it can tolerate and if I were you I would probably never want to look at a whole grain/seed of quinoa ever again.

For all the good things I always hear about flax and the nutritionist wanting me to add it into my diet I cannot tolerate the stuff in any form...I have tried quite a few times and even a small amount of the seeds or oil will upset my stomach making me feel nauseous for a few hours.

I am aware of the current research on quinoa strains and until I hear more I am not too concerned yet. Still I am watching for my having any possible reaction to it because I read botanists have developed saponin-free strains of quinoa to avoid the inconvenience of having to rinse it. Actually I am quite angry about it because every time in the past they have messed with something (soy, wheat and corn) I become sick and no longer can have it.

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Pegleg84    50

Eep! Genetically modifying it isn't going to help! People are crazy....

Sorry to hear about your flax problem. That something I should be eating more of.

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I have been coeliac for 33 years now and I think I have had IBS for at least 20 years (but manageable by diet) & my sensitivities to food seem to change regularly - some worsen, some improve - so it gets very confusing. Coeliacs disease is an immune-mediated disease and people with immune mediated diseases often develop other immune-mediated problems so it shouldn't be too surprising to us (though it is depressing :( ) that we develop other food allergies or food sensitivities or even immune mediated diseases as time goes on. I just keep searching for the right combination of foods in my diet & try not to feel too sorry for myself about what I can't eat :rolleyes: - I'm not saying I always succeed on the not-feeling-sorry-for-myself but I pray a lot & try to remember the people in third world countries who have nothing to eat :(

I have given up on trying any grains of any kind (I know quinoa is officially a seed but I react the same way to it as I do to grains) to be honest because they all make me unwell and it's just not worth it.

I have been on a low carb diet for the last 6 months & I have felt better than I have felt for at least 10 years - my irritable bowel has virtually disappeared (unless I eat the things I know I shouldn't like certain fruits or egg), I can eat foods I couldn't eat before, I have improved energy levels (though not wonderful), I no longer suffer from chronic cystitis & I am less depressed. Has anyone else had positive experiences with a low-carb diet ?

Sorry about the long post but this is the first coeliac forum or group I have ever been a member of so I have 33 years to get off my chest :D

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IrishHeart    1,634

it shouldn't be too surprising to us (though it is depressing :( ) that we develop other food allergies or food sensitivities or even immune mediated diseases as time goes on.

I have given up on trying any grains of any kind (I know quinoa is officially a seed but I react the same way to it as I do to grains) to be honest because they all make me unwell and it's just not worth it. I have been on a low carb diet for the last 6 months & I have felt better than I have felt for at least 10 years - my irritable bowel has virtually disappeared (unless I eat the things I know I shouldn't like certain fruits or egg), I can eat foods I couldn't eat before, I have improved energy levels (though not wonderful), I no longer suffer from chronic cystitis & I am less depressed. Has anyone else had positive experiences with a low-carb diet ?

Sorry about the long post but this is the first coeliac forum or group I have ever been a member of so I have 33 years to get off my chest :D

Hello and welcome!

yes, technically....quinoa is not a grain, that's true.

So glad you are feeling better!

Here is the thing....some of us cannot tolerate OTHER food proteins (for me, it's soy and dairy )

so, everyone has to figure out what works.

Never, ever give up thinking you will not feel well or get better!! You will.

I have given up all grains and dairy myself just 10 days ago to see if I can reduce the inflammation in my body. (yes, I have tried this many times before, but I figure after 2 years post DX maybe it will work THIS time)

Any "itis"-- like cystitis...I had it too--is inflammation. And if we reduce inflammation in the body, we can rid ourselves of all these inflammatory symptoms. You cannot believe how bad I was... :( unable to walk, sit ,stand and even open a jar or dress myself....and where I am now. I just stacked wood this afternoon! Do I still have pain? yes, but I am FUNCTIONING.

Hang in there. Best wishes all.

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mushroom    1,205

I am thinking perhaps the quinoa you ate was not rinsed enough. If the saponins on it are not rinsed off adequately they will cause a laxative effect.

And quinoa itself is high fiber. So I wouldn't recommend ever eating a large bowl of it. It has been believed to work as a prebiotic which can tone your colon.

Quinoa is not a true grain...it is classified as a member of the goosefoot family and related to beets, spinach and chard.

Interesting that. I cannot eat quinoa, beets or more than a smidgen of spinach, but chard is my favorite healthy vegetable.

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GottaSki    459

Interesting that. I cannot eat quinoa, beets or more than a smidgen of spinach, but chard is my favorite healthy vegetable.

And I can eat spinach all day long, but cannot eat quinoa, beets or chard :huh:

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IrishHeart    1,634

Interesting that. I cannot eat quinoa, beets or more than a smidgen of spinach, but chard is my favorite healthy vegetable.

Chard is my fav, too, and I love spinach.....quinoa is okay in small doses.... Beets..make me hurl

And I can eat spinach all day long, but cannot eat quinoa, beets or chard :huh:

we are a strange Threesome!

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Thankyou for your encouragement :) It's good to know I'm not just weird - I'm pretty sure my mum thinks all my food sensitivities are psychological because every time I go there she says "what can't you eat now" & rolls her eyes. So I just take my food everywhere I go now & never eat out at a restaurant.

I am fortunate that I can eat dairy foods because I am allergic to egg, sensitive to soy & I'm vegetarian so that narrows down your protein sources a bit !!

Yes, I have allergic dermatitis, reactive arthritis, some sacroiliac spondylitis so I know what you mean about the "itis"es

I am very glad to be able to talk other people that have had similar experiences (although I'm sorry for you that you have these dietary restrictions & health challenges :( )

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