Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ugh! Is Anything Safe?


cait

Recommended Posts

cait Apprentice

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fairy Dancer Contributor

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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

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

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

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

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

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

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

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

IrishHeart Veteran

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

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

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

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

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

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

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

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

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

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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    4. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,927
    • Most Online (within 30 mins)
      7,748

    drw80whz
    Newest Member
    drw80whz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.