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. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    3. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748

    sbr
    Newest Member
    sbr
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • 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.