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Are You A Celiac Who Reacts To gluten-free Oats? Please Help!


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#1 T.H.

 
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Posted 13 February 2011 - 09:53 PM

Best I can tell, I seem to be one of the small percentage of celiacs who react to oats just like wheat, rye and barley, whether the oats are gluten free or not. We think my daughter might be having the same issue; we keep trying to figure out all her reactions, and slowly learn more and more.

If any other oat intolerant folks might be able to offer some insights, I'd be most grateful! How did you find out you had problems with oats? Do you get the same reaction to them as you get to gluten? Less severe? More?

I was at a gluten free event the other day, and another oat intolerant celiac mentioned that Bob's Red Mill's gluten free facility processes gluten free oats there. That gal can't have any of the Bob's Red mill stuff as a result - has too many reactions.

Has this been the case for any other oat intolerant celiacs? Do you know if a gluten free facility usually mean gluten-free oat free, too, or usually not? Do you know of any oat-safe gluten-free companies?

I know that CSA gluten-free certified goods aren't allowed to have gluten-free oats, but I almost never see these, so I'm wondering what else might be safe. I went and called up all these gluten-free companies to find out their practices, their level of ppm testing, and so on, and I never once thought to ask about whether they dealt with gluten-free oats or not.

So frustrating to realize that now I get to go and call them all up all over again if I want to know if they might be safe for my daughter.

Although, as a thank you, I can pass along the one bit of information I DID find out that started this whole train of thinking in the first place. If you are an oat intolerant celiac, Lundberg rice may not be the best for you. They use oats as their cover crop for their rice (It's on their website, if you're curious). D:

I get SO sick off that rice. And when I was discussing the subject at that same gluten free event, another oat intolerant gal had one of those 'aha' moments, too. She can have other rice, but the super gluten-free Lundberg rice has always made her really ill - now she knows why, eh?

Anyway, any information on product recommendations, or questions to ask companies when trying to find out about oats, or foods that can be problematic, would be very welcome! I'm especially concerned with medications, now, too. Do any of these ever use oats? I wouldn't think so...but I wouldn't have thought that added gluten, either, before I went gluten free. :unsure:

Thanks for any help you can give me. :)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#2 ravenwoodglass

 
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Posted 14 February 2011 - 04:32 AM

I figured out I was intolerant to oats by challenging them a couple years ago. I ate them three times a day and reacted by day 2. It was the same reaction that I get to gluten. I didn't like the one Bob's Red Mill product I tried and since there are so many I do like, like Pamela's mix and Tom Sawyer, I never tried any others.
As to meds I don't think oats are commonly used in meds. The starch is most likely to be corn, tapioca or wheat starch. I do always ask if wheat starch is used as that is thought to be gluten free rather than asking if the med is gluten-free.
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celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
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Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


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#3 Roda

 
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Posted 14 February 2011 - 05:29 AM

Yep, count me as an oat intolerent person. I react very badly. I first tried them when I was 7 months gluten free and I reacted within 30 minutes of eating them. I also had an A Ha moment in August of last year. I started having problems in Jan with symptoms that I thought was my gallbladder (debiliting D and bloating and reflux). After many tests, I was told it was my celiac acting up(original sx were different and doc told me that my reactions can change) that I was getting gluten from somewhere (still high Igg gliadin antibody). I was very strict but it was either to get more strict or go on steroids. So I eliminated any gluten free products I had been using since diagnosis. Majority of those were Bob Red Mills products. I never gave it a thought until then that it could be the potential CC from the gluten free oats affecting me even though I knew I couldn't tolerate the oats. I went on Creon to help with digestion and three months later I was remarkedly better that I no longer needed the creon. FF to Jan. this year. I went to a bakery at Downtown Disney (gluten free of course) and ate several donuts and cookies. I knew beforehand that they used Bobs products, but I decided to try anyway. Well, within a day I had heartburn and reflux. The bloating started two days later and by day 4 I was miserable with the big D and steatorhea. I got home on Sunday and started the enzymes back and treated my stomach gingerly and by a week later I am all better and no longer needing the enzymes again. So, now I know for sure that Bob's products are OUT!

Very interesting about the Lundburg rice cakes. I was eating them for awhile, but went back to Quaker after they started labeling the gluten free. I don't eat their bag rice at all.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 dilettantesteph

 
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Posted 14 February 2011 - 05:35 AM

I found out that I reacted to gluten free oats by trying them at about 6 months gluten free. I had about half a cup and was sick for about two months. That's how I knew that it was the oats and not cc. At that point cc made me sick for about a week. When I looked into it I found that lots of gluten free companies carry oat products. It was helpful to me to figure that out and cut out anything from companies which carried oat products.
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#5 Gemini

 
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Posted 14 February 2011 - 07:50 AM

Although, as a thank you, I can pass along the one bit of information I DID find out that started this whole train of thinking in the first place. If you are an oat intolerant celiac, Lundberg rice may not be the best for you. They use oats as their cover crop for their rice (It's on their website, if you're curious). D:

I get SO sick off that rice. And when I was discussing the subject at that same gluten free event, another oat intolerant gal had one of those 'aha' moments, too. She can have other rice, but the super gluten-free Lundberg rice has always made her really ill - now she knows why, eh?



I just checked the Lundberg website and failed to find the information you state on using oats as a cover crop for their rice. Could you please reference where you found that information? I have my doubts as they openly advertise a large portion of their products as gluten-free, yet in their information on Celiac, include oats as being problematic for some Celiacs.

I fall into the category of an extremely sensitive Celiac and eat Lundberg products all the time. They have never given me an ounce of trouble but I admit I can tolerate certified gluten-free oats just fine. However, I ate a lot of oats pre-diagnosis so was used to the fiber content. Since Celiacs have delicate Gi tracts anyway, the reaction some have to oats may have nothing to do with gluten and everything to do with fiber content. It will give you the same symptoms. Some can also tolerate them after awhile, once their gut has healed. I would hate to see yet another product trashed on this forum, when for the vast majority of Celiacs, they are a delicious and viable option for the gluten-free diet. I know many Celiacs who swear by Lundberg...their products are great!
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#6 T.H.

 
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Posted 14 February 2011 - 10:46 AM

I just checked the Lundberg website and failed to find the information you state on using oats as a cover crop for their rice. Could you please reference where you found that information?


Sure, no problem. It's on the Lundberg website in a couple places. Not the spots where I'd personally think to look for it, though.
http://www.lundberg....Watch_2010.aspx

The information on the above link is in the slide show. They also had a recent blog post in January where they talked about their cover crops:
EDIT: whoops, screwed up the link there, at first.
http://www.lundberg....Cover_Crop.aspx

from the blog:"...My name is Bryce Lundberg and I'm one of the family members at Lundberg Family Farms. Today, I thought we'd look at some Cover Crop's and how they're starting to grow, and the value of cover crops, and what we have here.... We've planted Oats & Vetch." [Vetch is a legume, I understand]

I was really disappointed when I heard about this. It's the one rice we'd been buying because it was so gluten free. I always had trouble with it, but my celiac father and brother had no trouble at all with it.

I suppose I'm lucky in my reactions to gluten because they're really easy to distinguish from everything else, so that makes it simpler, you know? I don't get any gut symptoms from gluten at all unless I've had gluten cc for weeks straight, and then it's the big C, not the big D. My symptoms are neuro (vertigo and vomiting as a result of that), fever, joint pain - that sort of thing. I haven't come across anything else yet that mimics the same symptoms, so it's actually made it much easier for me to distinguish gluten from my other food issues (which do give me gut issues, at times).

I would hate to see yet another product trashed on this forum, when for the vast majority of Celiacs, they are a delicious and viable option for the gluten-free diet.


Hopefully I didn't say there weren't good for most, just could be a cc risk for those who can't have even gluten-free oats. If I implied differently, I certainly didn't mean to. :)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 Gemini

 
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Posted 14 February 2011 - 02:21 PM

Sure, no problem. It's on the Lundberg website in a couple places. Not the spots where I'd personally think to look for it, though.
http://www.lundberg....Watch_2010.aspx

The information on the above link is in the slide show. They also had a recent blog post in January where they talked about their cover crops:
EDIT: whoops, screwed up the link there, at first.
http://www.lundberg....Cover_Crop.aspx

from the blog:"...My name is Bryce Lundberg and I'm one of the family members at Lundberg Family Farms. Today, I thought we'd look at some Cover Crop's and how they're starting to grow, and the value of cover crops, and what we have here.... We've planted Oats & Vetch." [Vetch is a legume, I understand]

I was really disappointed when I heard about this. It's the one rice we'd been buying because it was so gluten free. I always had trouble with it, but my celiac father and brother had no trouble at all with it.

I suppose I'm lucky in my reactions to gluten because they're really easy to distinguish from everything else, so that makes it simpler, you know? I don't get any gut symptoms from gluten at all unless I've had gluten cc for weeks straight, and then it's the big C, not the big D. My symptoms are neuro (vertigo and vomiting as a result of that), fever, joint pain - that sort of thing. I haven't come across anything else yet that mimics the same symptoms, so it's actually made it much easier for me to distinguish gluten from my other food issues (which do give me gut issues, at times).



Hopefully I didn't say there weren't good for most, just could be a cc risk for those who can't have even gluten-free oats. If I implied differently, I certainly didn't mean to. :)



Thanks for those links! I am going to take a look at them tomorrow. I love Lundberg products so am very interested in seeing them.

A question I have, and this is before looking at the links, is if they use oats and they aren't exposed to other grains, the oats would be gluten free?
This is really going deep but I am interested in how they do things. I am fine with the certified oats but would not want to come into contact with regular oats. I did that in the beginning and won't do it again!
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#8 Looking for answers

 
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Posted 14 February 2011 - 03:25 PM

Me too. I ate a bag of gluten-free granola and paid big time for that. Rib cage pain, D, bloat...ugh.
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#9 GFinDC

 
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Posted 14 February 2011 - 05:19 PM

That is interesting that they use oats as a over crop. I have eaten the Lundberg rice cakes before without a problem. I don't know if you watched the whole slide show but they had several steps where they went thru and pulled weeds. They identified 3 different weeds that I remember that they were trying to keep out. They didn't mentioned oats as a weed that I caught anyway. I wonder if the oats are drowned by the flooding and can't grow?
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 T.H.

 
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Posted 14 February 2011 - 05:43 PM

A question I have, and this is before looking at the links, is if they use oats and they aren't exposed to other grains, the oats would be gluten free?


Yeah, they should be. As far as I understand the whole gluten free oats issue, the issue is that oats and wheat are so often grown, harvested, and processed together that you simply couldn't get oats without wheat gluten unless you did it on purpose. So any oats not grown with wheat, or harvested/processed with wheat, should be gluten-free (I believe. Someone please correct me if I'm wrong, though!)

They didn't mentioned oats as a weed that I caught anyway. I wonder if the oats are drowned by the flooding and can't grow?


I honestly don't know. A gentleman I know who recognizes plants better than I did said the oats looked like they had gone to seed before they were plowed under (in their pictures), so that ups the chances that oat gluten is covering the ground and contaminating the area. Also, depending on how oats grow, if they go to seed, there's the slight chance they could grow among the rice, but I haven't asked them yet, honestly.

I knew the Lundberg rice always made me feel unwell, so this discovery was more in the nature of an 'ohhhh, that may be the reason, 'than anything else. Although I have emailed them and asked if they would consider putting up a mention of this on their gluten FAQ section, for those celiacs who have oat issues. :-)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#11 CMCM

 
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Posted 14 February 2011 - 10:08 PM

I've read a lot of things lately suggesting that the oat protein is problematic for celiacs more than some people are trying to make us believe. I love oatmeal and tried various gluten free versions, but I did have problems, and especially if I had oatmeal several days running. Not as bad as gluten, but they definitely bothered me.
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#12 T.H.

 
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Posted 15 February 2011 - 09:18 AM

I've read a lot of things lately suggesting that the oat protein is problematic for celiacs more than some people are trying to make us believe.


I hadn't heard that! Is it that you're seeing more celiacs who are having oat issues, or is it studies or doctors that are saying this? If you had any links, I'd be very interested in seeing them.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#13 precious831

 
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Posted 15 February 2011 - 03:35 PM

I can't tolerate any grains at all so yes I do react to gluten-free oats.
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