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Ugh! Is Anything Safe?

cait

By cait
in Coping with Celiac Disease

Recommended Posts

cait Apprentice
cait
Posted

I'm a week into an elimination diet, trying to figure out if I am reacting to other things or if I'm just having frequent glutenings courtesy of the kids in my class. This week has been incredibly frustrating because not only can I not eat anything, I'm also not feeling any better. In fact I'm more exhausted than I've been in a while. I think I'm eating enough in terms of nutrients and quantity, so I'm pretty sure the exhaustion is not from that.

I'm starting to wonder if I'm sensitive to oats. I've just avoided them since going gluten-free, but am wondering if I'm reacting to oat CC in some of the things we've been using, especially after reading something today saying that Lundberg rice may be oat CCd. And, of course, we've been using their rice, rice cakes, and brown rice syrup all week. If that's the case, what rice and/or flours ARE OK? I know Bob's stuff is often oat contaminated. Are there any gluten-free flours or rice products that are NOT CCd by oats?

Is there anything ELSE I should be aware of? This process is making me crazy.

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Fairy Dancer Contributor
Fairy Dancer
Posted

I just play it safe and avoid all grains. I get my carbs from startchy vegetables etc instead (ie potatoes, butternut squash, parsnips). The rest of my diet is made up of meat, some fish (if it is low mercury) fruit, vegetables and nuts. I also consume dairy as I seem to be ok with that as long as I don't over do it.

alicewa Contributor
alicewa
Posted

I just play it safe and avoid all grains. I get my carbs from startchy vegetables etc instead (ie potatoes, butternut squash, parsnips). The rest of my diet is made up of meat, some fish (if it is low mercury) fruit, vegetables and nuts. I also consume dairy as I seem to be ok with that as long as I don't over do it.

Fructose malabsorption is a common problem for celiacs after going gluten free. BE CAREFUL and don't eat too much fruits and vegetables. Plain rice noodles with some sunflower oil poured on them after boiling works well! Make sure you eat a safe, simple diet for now! :)

Jestgar Rising Star
Jestgar
Posted

Fructose malabsorption is a common problem for celiacs after going gluten free. BE CAREFUL and don't eat too much fruits and vegetables.

I don't think that's an issue for most people.

Takala Enthusiast
Takala
Posted

Fructose malabsorption is a common problem for celiacs after going gluten free. BE CAREFUL and don't eat too much fruits and vegetables. Plain rice noodles with some sunflower oil poured on them after boiling works well! Make sure you eat a safe, simple diet for now! :)

Don't eat too many fruits and vegetables ?

People should eat whatever makes them feel better.

Good luck finding uncontaminated sunflower oil. Not likely.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

I'm in the same boat as you. A month of intense semi-elimination diet: nothing. After reacting severely to some tahini, I am now going to explore salicylate sensitivity.

carolannf Newbie
carolannf
Posted

I'm a week into an elimination diet, trying to figure out if I am reacting to other things or if I'm just having frequent glutenings courtesy of the kids in my class. This week has been incredibly frustrating because not only can I not eat anything, I'm also not feeling any better. In fact I'm more exhausted than I've been in a while. I think I'm eating enough in terms of nutrients and quantity, so I'm pretty sure the exhaustion is not from that.

I'm starting to wonder if I'm sensitive to oats. I've just avoided them since going gluten-free, but am wondering if I'm reacting to oat CC in some of the things we've been using, especially after reading something today saying that Lundberg rice may be oat CCd. And, of course, we've been using their rice, rice cakes, and brown rice syrup all week. If that's the case, what rice and/or flours ARE OK? I know Bob's stuff is often oat contaminated. Are there any gluten-free flours or rice products that are NOT CCd by oats?

Is there anything ELSE I should be aware of? This process is making me crazy.

Wow, never thought of being glutened by the kids in my class...hmmm that could be my problem too. My natropath told me to avoid rice in the first week of elimination diet (which I will start on Monday - its Thanksgiving here in Canada and I just couldn't do it) Her reasoning was that I have been gluten free for a year now and still have symptoms and there are a small percentage of people who are actually allergic to rice. It is going to make the elimination diet even more fun! but rice will be the first thing I add back in. She also said that common reactions to elimination diet are: fatigue, irritablilty, headaches and general malaise...but that they are withdrawal symptoms and should disappear in 2-5 days.

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IrishHeart Veteran
IrishHeart
Posted

I'm starting to wonder if I'm sensitive to oats. I've just avoided them since going gluten-free, but am wondering if I'm reacting to oat CC in some of the things we've been using, especially after reading something today saying that Lundberg rice may be oat CCd. And, of course, we've been using their rice, rice cakes, and brown rice syrup all week. If that's the case, what rice and/or flours ARE OK? I know Bob's stuff is often oat contaminated. Are there any gluten-free flours or rice products that are NOT CCd by oats?

When I last read, Lundberg and Bob's Red Mill gluten-free products are made in dedicated gluten-free facilities, according to their websites and company statements-- so I am not sure why that would be an issue.

cait Apprentice
cait
Posted
  • Author

I was expecting withdrawal, but was hoping it would be over by now. I'll give it some time I guess, but trying to eliminate possible oat CC is further complicating things. Also, I've been vegetarian for at least 15 years, and haven't eaten red meat in longer than that, but knowing for sure that gluten and dairy are out and that soy is another likely contender, I'm adding some fish and meat back in. But I don't LIKE it. So no chocolate + food I don't like + no improvement = cranky me. I don't think I can handle going grain free yet, but I guess it's something to try if nothing else works.

Before I drop rice, ARE there any brands that are free of gluten AND oat contamination? I'd like to rule out the CC possibility first.

cait Apprentice
cait
Posted
  • Author

When I last read, Lundberg and Bob's Red Mill gluten-free products are made in dedicated gluten-free facilities, according to their websites and company statements-- so I am not sure why that would be an issue.

Yes, they are totally fine on the gluten front, but I have read more than one person here saying that they have trouble with them because of oat sensitivity. This seems possible for me, since I had trouble with a recipe earlier in the week and tolerated it just fine using non-BRM flours. It would also explain why I've had mixed luck tolerating homemade gluten-free bread. I haven't tried actual oats yet because I haven't been gluten-free terribly long yet. Don't know whether it's a better idea to try them and see if I actually do have a reaction to them or just eliminate possible oat contaminated products for now.

domesticactivist Collaborator
domesticactivist
Posted

We found a lot of cc in alternate flours. That said, it sounds like the students are the biggest problem. Until you get that sorted, it will be very hard to tell which/if the foods you are eating are problematic.

carolannf Newbie
carolannf
Posted

We found a lot of cc in alternate flours. That said, it sounds like the students are the biggest problem. Until you get that sorted, it will be very hard to tell which/if the foods you are eating are problematic.

I'm acronym impared...what is cc?

IrishHeart Veteran
IrishHeart
Posted

Yes, they are totally fine on the gluten front, but I have read more than one person here saying that they have trouble with them because of oat sensitivity. This seems possible for me, since I had trouble with a recipe earlier in the week and tolerated it just fine using non-BRM flours. It would also explain why I've had mixed luck tolerating homemade gluten-free bread. I haven't tried actual oats yet because I haven't been gluten-free terribly long yet. Don't know whether it's a better idea to try them and see if I actually do have a reaction to them or just eliminate possible oat contaminated products for now.

Could be---I recall reading that some celiacs have trouble with gluten-free oats at the beginning of healing. Or it could just be that --as you say--you haven't been gluten-free terribly long and your GI tract is still healing. It is very difficult to tell at first what other foods cause problems. In any case, I hope you find the culprit! It's a lot of detective work sometimes. :rolleyes:

domesticactivist Collaborator
domesticactivist
Posted

I'm acronym impared...what is cc?

Sorry - I was on my phone using shorthand! I meant cross-contamination.

IrishHeart Veteran
IrishHeart
Posted

I was expecting withdrawal, but was hoping it would be over by now. I'll give it some time I guess, but trying to eliminate possible oat CC is further complicating things. Also, I've been vegetarian for at least 15 years, and haven't eaten red meat in longer than that, but knowing for sure that gluten and dairy are out and that soy is another likely contender, I'm adding some fish and meat back in. But I don't LIKE it. So no chocolate + food I don't like + no improvement = cranky me. I don't think I can handle going grain free yet, but I guess it's something to try if nothing else works.

Before I drop rice, ARE there any brands that are free of gluten AND oat contamination? I'd like to rule out the CC possibility first.

I just reread this part to see if I can help...oh hon, you are going through many changes in your diet and I suspect that is what's making you feel out of sorts. Give it some time. I know that is not what you want to hear, but really, this healing thing takes time and adding in and taking out foods as you are--is making it very difficult to pinpoint what may be the problem--or if there is a problem at all--other than being newly gluten-free.

The beginning is rocky for sure. Hang in there. For a while, I thought everything was a problem at one time or another (made me crazy) until I relaxed and realized my gut was still healing. Eat PURE foods at first and then, add things in ONE at a time. Soon, you will see that foods you thought were a problem-- really are not. This is some of the best advice I got on here. :) Take note of how you feel, but understand that reactions are often delayed.

I hope you feel better soon!

IrishHeart Veteran
IrishHeart
Posted

My natropath told me to avoid rice in the first week of elimination diet (which I will start on Monday - its Thanksgiving here in Canada and I just couldn't do it) Her reasoning was that I have been gluten free for a year now and still have symptoms and there are a small percentage of people who are actually allergic to rice.

Well, you probably know by now that an allergy is different from an intolerance, yes?? I am not sure what she means here ...are you having anaphylactic reactions to rice? Usually rice is hypo-allergenic, yet some people seem to do better without it.

What kind of symptoms are you still having???

ravenwoodglass Mentor
ravenwoodglass
Posted

Could be---I recall reading that some celiacs have trouble with gluten-free oats at the beginning of healing. Or it could just be that --as you say--you haven't been gluten-free terribly long and your GI tract is still healing. It is very difficult to tell at first what other foods cause problems. In any case, I hope you find the culprit! It's a lot of detective work sometimes. :rolleyes:

Some of us remain intolerant of gluten free oats long after we have healed. I have to avoid BRM products still for that reason.

IrishHeart Veteran
IrishHeart
Posted

Some of us remain intolerant of gluten free oats long after we have healed. I have to avoid BRM products still for that reason.

See, now....this is something new I have learned just recently---about the Bob's Red Mill products and the oats issue...I keep learning all the time! Everyone's body is different and learning what works for you takes time and patience.

ravenwoodglass Mentor
ravenwoodglass
Posted

Fructose malabsorption is a common problem for celiacs after going gluten free. BE CAREFUL and don't eat too much fruits and vegetables. Plain rice noodles with some sunflower oil poured on them after boiling works well! Make sure you eat a safe, simple diet for now! :)

I really don't think fructose is an issue for most of us. What can be an issue is increasing fiber intake suddenly. Casien or lactose in dairy and soy are the most common intolerances. Plain rice noodles with just oil isn't going to give the body the nutrition it needs to heal. Going with whole unprocessed foods is the safest.

ravenwoodglass Mentor
ravenwoodglass
Posted

See, now....this is something new I have learned just recently---about the Bob's Red Mill products and the oats issue...I keep learning all the time! Everyone's body is different and learning what works for you takes time and patience.

Quite true and it can take some time to figure out what we tolerate and what we don't. It only took me 3 years :ph34r: to figure out the reason I thought I was being CC'd by stuff from dedicated gluten free facilities was because I was intolerant to soy. I miss oats almost as much as I missed gluten at first. I would give almost anything to have an oatmeal raisen cookie, well that and some phyllo dough wrapped around some apples.

Fairy Dancer Contributor
Fairy Dancer
Posted

Fructose malabsorption is a common problem for celiacs after going gluten free. BE CAREFUL and don't eat too much fruits and vegetables. Plain rice noodles with some sunflower oil poured on them after boiling works well! Make sure you eat a safe, simple diet for now! :)

I seem to be ok with fructose as far as I can tell. I also tend to avoid rice as it is a grain. I am doing a slightly different diet to just a gluten free one as I am trying a modified version of the paleo diet (that includes carbs and a limited amount of dairy). The full paleo diet is basically no processed foods, no grains, no dairy and no legumes.

I consume limited amounts of dairy, some grain free processed foods as treats only and the occasional legume (I only really like green beans and garden peas). Other than that my diet is more paleo than anything else lol. I also sometimes use virgin coconut oil for cooking instead of types of oils although I sometimes use vegetable oil for roasting.

Today for dinner I had chicken stir fry with courgette, kale, carrots and a jacket potato followed by a bowl of raspberries and blueberries. It seems to be sitting ok in my digestive system.

I also moderate foods with added sugars (limited to treats only) and get my carbs from the sugars that are in the foods naturally (rather than put in by a manufacturer). Thus far I am seeing positive results until I try to put grains in again so I have abandoned them completely for the time being.

IrishHeart Veteran
IrishHeart
Posted

Quite true and it can take some time to figure out what we tolerate and what we don't. It only took me 3 years :ph34r: to figure out the reason I thought I was being CC'd by stuff from dedicated gluten free facilities was because I was intolerant to soy. I miss oats almost as much as I missed gluten at first. I would give almost anything to have an oatmeal raisen cookie, well that and some phyllo dough wrapped around some apples.

I hear you, dear Raven ;) ...I can adjust to almost anything, but I am mourning phyllo pastry...my half -Armenian heritage loves baklava....sigh :( I have not found any pro baker who can make gluten-free phyllo yet....

IrishHeart Veteran
IrishHeart
Posted

Other than that my diet is more paleo than anything else lol. I also sometimes use virgin coconut oil for cooking instead of types of oils although I sometimes use vegetable oil for roasting.

Thus far I am seeing positive results until I try to put grains in again so I have abandoned them completely for the time being.

Sounds as if you have found the right approach for you!! Many people benefit from this "paleo" diet at the beginning(I did--but I kept wild rice in, I have to confess) and then, if they wish, they add in rice or other grains. I use a variety of alternative grains now and seem to tolerate them all pretty well. Still have a problem with beans/some legumes--digestion-wise. But at first, I simply was not sure what was causing continuing digestive symptoms ...in the end, it is all trial and error.

I have a friend with MS who has avoided ALL grains for 25 years---giving up gluten long before she knew it may be beneficial for people with AI diseases-- and has kept her MS at bay, even running the Boston Marathon! So, for some folks, a no-grain diet works very well. :)

GFinDC Veteran
GFinDC
Posted

Quinoa is an alternative grain some people like to use instead of rice. I don't do rice anymore myself and there are others who have problems with it, but probably many more that have no problems with it. Dang it, why can't we all just be the same? Too boring I guess.

I can't eat oats either, and there are some people (we are very special I stink), who react to them. Well, not special really but 10% or slightly more percent of celiacs react to the oat proteins themselves like they were the other bad grains. So, no oats for you! or me anyway. I liked oats too. durn it. Oh swell.... :D

If you think about it rice is more a filler than anything, it doesn't add a whole lot to a dish except volume and gooeyiness, (excuse me rice lovers). You can make the same dish without rice or quinoa or any grain and have a fine meal. Lettuce leaves can be used for wraps instead of grain things too.

So, simple diet, simple diet, simple diet. Start with that and keep to it until you learn what your body likes and what it doesn't like. Nightshades, dairy, soy, corn, eggs, lectins, salicylates, fructose malabsorption, we gots all kind of possible problems to choose from diet wise. What works for your body can be 100% different from what works for mine though. We is different, in some respects at least, possibly.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

If you think about it rice is more a filler than anything, it doesn't add a whole lot to a dish except volume and gooeyiness, (excuse me rice lovers).

No, seriously, that's why rice is awesome. It adds texture and volume whilst absorbing the flavour of whatever it is mixed in with. It also adds cheap calories that are not totally empty, like most cheap calories are.

I'm a poor post-college student. I need things like this, which is what wheat pasta used to be for me.

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