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CeliacMommaX2

Safest gluten free oats

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We are reintroducing oats for my 8 year old.  We cut gluten-free oats after her TTG remained elevated after 1 1/2 years of being strictly gluten-free.  What are the safest oats to give her?  I'm nervous with all the talk of the "mechanically separated" processes.

Thank you!

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This is just my opinion and I do NOT consume oats for these reasons:

1) the whole gluten free mechanical vs. dedicated field grown (purity oats) issue that is not resolved. 

https://www.glutenfreewatchdog.org/news/why-mechanically-and-optically-sorted-gluten-free-oats-continue-to-keep-me-up-at-night/

2) new evidence of all children being exposed to pesticides from oats.  

https://www.ewg.org/childrenshealth/22275/new-round-ewg-testing-finds-glyphosate-kids-breakfast-foods-quaker-oats

3) Personally, I have diabetes and limiting my carbs or saving them to be consumed in vegetable form is better for me. I avoid all grains for this reason (but have been known to cheat, but never with gluten).  

I do buy oats for my non-celiac daughter, but just for porridge. Those oats are organic and I can feel better that her pesticide exposure is limited but not perfect.  I do not buy cereal, cookies, or cereal bars unless they are organic for her and gluten free In case hubby snags one and he has been gluten-free for 18 years.  

How do you know if you are getting mechanically sourced oats in your gluten free cereal bars?  You don’t unless it is stated on the box.  Believe me, General Mills made a huge capital investment in that mechanical sorting machine.    They need to sell oats to anyone in order to recoup that cost.  Easy to avoid the controversial gluten-free Cheerios, but what about all the new gluten free cereal bars and cookies that have hit the market lately?     Certified gluten-free might be your best bet.  At least they are tested.  Or consider making your own cereal bars from purity organic oats.   Easy to make and freeze little servings.  Customize to your own taste.  

These are my personal opinions.  I am sure other members have much to contribute.  

Finally, this person just responded to an article on celiac.com.  She states that she has been glutened more in the last decade than the first two decades.  I bring this up because we have been gluten free for 20 years and I can attest that there has been an explosion of gluten-free products in the market.  Good or bad for celiacs?  

https://www.celiac.com/articles.html/miscellaneous-information-on-celiac-disease/additional-celiac-disease-concerns/has-the-gluten-free-food-craze-made-things-worse-for-people-with-celiac-disease-r4605/?tab=comments#comment-17375

 

Edited by cyclinglady

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I second avoiding them period, heck I insist on avoiding grains period....I feel so much better on a paleo diet and using nut meal porridge over grain based.
If you insist look up http://www.glutenfreeoats.com/ and go the organic route. The company has celiac in the family and ONLY grows oats on they own farms, use their own equipment for harvesting, transporting, processing, and packaging. No CC chances as gluten free only oats are all they grown and handle, they test in addition I think it was 3 times per lot. http://www.glutenfreeoats.com/pages/Our-Inspection-Process.html

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IMHO, none.

Evidence for the safety of avenin (the protein in oats that is similar to gluten in wheat) in oats is patchy. Yes, there are some feeding studies (from Europe) that show that people seemed to tolerate eating pure oats well, but I have some major concerns about these studies:

  • large drop-out rates from these studies that were not investigated (authors don't know if these people had a symptom relapse/intestinal damage!)
  • follow-up surveys from participants indicated that many stopped eating oats after the study (again, not investigated - possibly concerning since it could have been to do with relapse)
  • participant bias (people who are less symptomatic are more likely to volunteer for feeding studies - these people may not be representative of the general celiac population)
  • endoscopy/blood testing may not be sensitive to capture low level damage that could occur - barley used to be a controversial grain because it caused patchy/no damage in some celiacs
  • some feeding studies showed that while no intestinal damage was detected, blood tests showed increases in non-specific inflammatory markers (possibly worrisome!)
  • it has been shown from cells harvested from celiacs that the immune system can react/bind to avenin - possibly some variability depending on genotype and oat cultivar?

I realize my opinion is "controversial" because some countries have decided to allow oats to be included in gluten-free foods. However, we must remember that safety regulations (whether that's food, vehicles, bridges, houses) are informed by science, not the other way around. Regulators devise rules based on what the scientific consensus of risk is, and what is realistically achievable from a cost/reality perspective (which sometimes involves compromises). This is how we got 20 ppm as a standard - there is nothing magic about 20 ppm in scientific studies about celiac disease, it was just chosen as a compromise between the scientific ideal (as close to 0 gluten as possible) and what is realistically achievable (current testing limits, cost to manufacturers, standards in other countries).

IMHO the science for oat safety is weak, and it was a mistake to "legalize" oats at this stage. Companies are pushing them on people without having to disclose what is said in all studies (even the optimistic ones): celiacs consuming pure oats should limit intake to 1 serving/day, and not do so unless monitored closely by an MD, and that some celiacs do have a reaction to avenin that is similar to wheat/barley/rye. Do you think many celiacs consuming oats are following those rules or even aware of those important points? I doubt it.

Some may disagree with my take, but it is up to you to decide based on evidence. If you do decide to go with oats, stick with purity protocol ones and ensure your daughter has frequent follow-ups to ensure she is tolerating them - damage can occur in absence of symptoms. I've linked some review articles (analyzing various individual studies based on their strengths/weaknesses) for you to consider:

https://www.hindawi.com/journals/cjgh/2016/1576360/abs/

https://www.gastrojournal.org/article/S0016-5085(17)35474-4/fulltext

https://pdfs.semanticscholar.org/b152/492de1792c662958448d824c09ad98eda087.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2653911/

 

 

 

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After I finally got all my antibody levels down to the normal ranges I asked my GI if I could eat oats. She said I could try pure oats for 6 months then recheck antibodies.  I got the type Ennis recommended above.  Antibodies still ok after 6 months.  I love my morning oatmeal!

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One other thing to mention, I think studies found that 10% of celiacs react to oats regardless? I found I could not have any, now if that is UC related, blood sugar, or antibody I do not know. But I did use the ones I mentioned before in my bakery and sometimes used to have them before I changed to paleo.

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I love oatmeal too, but it reacts in my body the same as wheat rye or barley.  I tried many brands of the certified and cleanest and all that, all the same.  To me, not worth the risk, the protein is too similar to the other bad guys.

 

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1 minute ago, Beverage said:

I love oatmeal too, but it reacts in my body the same as wheat rye or barley.  I tried many brands of the certified and cleanest and all that, all the same.  To me, not worth the risk, the protein is too similar to the other bad guys.

 

Same. I used to eat oatmeal every single day, sometimes twice a day... so believe me when I say that I wanted oats to work very badly!

It's convenient for packed meals/traveling, and nutritionally quite good. I was very disappointed when I did the oat challenge... the results were unambiguously bad after only 2 days and I had to stop because I was so sick. It took me about 3 weeks to recover physically (iron probably got trashed - too exhausted to function), and resulted in a horrific DH outbreak. Those are not symptoms you can attribute to increased fibre intake.

One of the oats trial papers speculates that some people who experienced GI symptoms with oats might be unaccustomed to the extra dietary fibre. While this might be plausible, there wasn't really any scientific proof for this claim... yet many people/companies ran away with it.

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I did want to bring up some hope for people here on what I found for my "Oatmeal" fix.
Miracle Noodles makes a Konjac rice, rinse it, boil it, rinse again, then dry it out a bit in a hot skillet then boil in a bit of nut milk and thicken with nut butter or flour. THEN add in 10-20drops of Oatmeal Flavor from oooflavors. The stuff is oat free, gluten free and completely artificial flavored but gives your a bit of nostalgia with that texture and flavor...not a ringer but it does give some satisfaction. I find pulsing the mix with a hand blender to give a bit more of a "quick oats" texture was nice. I made my own version based off this https://miraclenoodle.com/blogs/customer-recipes/89264838-low-carb-miracle-rice-oatmeal

PS
Oh if you can have carbs, look up "Congee" you make it with rice does great in a crockpot over night, second best thing to oatmeal. Add in the oooflavors oatmeal flavor for the dead ringer.

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Good hint @Ennis_TX. I've never seen that product, but I'm sure it would be great especially for cookies. Though I think the taste might scare me at first.

I usually make grits (corn or rice) and put the same stuff in that I would when I made oatmeal - peanut butter, honey, berries, nuts, seeds etc. You can also get quinoa flakes, but I've had issues with the brands available to me as they also make gluten-free oat products (contamination seems to cause issues for me).

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3 hours ago, apprehensiveengineer said:

Good hint @Ennis_TX. I've never seen that product, but I'm sure it would be great especially for cookies. Though I think the taste might scare me at first.

I usually make grits (corn or rice) and put the same stuff in that I would when I made oatmeal - peanut butter, honey, berries, nuts, seeds etc. You can also get quinoa flakes, but I've had issues with the brands available to me as they also make gluten-free oat products (contamination seems to cause issues for me).

Fun list for you imagination
https://www.oooflavors.com/pages/all-purpose-flavor-list
Cookie fun
https://www.oooflavors.com/collections/cookie-flavors
Cereal Fun
https://www.oooflavors.com/collections/cereal-flavors

I have used them only recently changing over form Capella flavors...Capella was good but they were VERY inconsistent with concentrations. This company gave more options, and was bragged on by 2 companies at the local gluten free expo. They assured me all their flavors were gluten, corn and nut free....I got a evil grin when they said the corn bread was corn free and the wheat bread was wheat free.....fake flavors to fill the need for stuff we can not eat.....THANK GOD. Amusing how chemist can mix up chemical compounds to match the flavors of foods without actually using them....I mean I am all for natural organic but bless they guys that came out with this stuff.

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Thank you for all of the input everyone!  I really want to make oats work being a busy mom of 4 little ones (2 with celiac).  But maybe I need to re-think the risk.  :(  I wish there were healthy breakfast options that were quick/easy to prepare (and that my kids would eat)!  I'm tired!  😋

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12 minutes ago, CeliacMommaX2 said:

Thank you for all of the input everyone!  I really want to make oats work being a busy mom of 4 little ones (2 with celiac).  But maybe I need to re-think the risk.  :(  I wish there were healthy breakfast options that were quick/easy to prepare (and that my kids would eat)!  I'm tired!  😋

Cold Cereals like Cereal School, Julian Pro Granola, Nuco Coconut Crunch for healthy options, chex for carb loads.
You can do hot Congee (overnight rice in a crock pot with a 1:6 or 1:8 ratio of dry rinsed rice to water or almond milk) Add in sweetener/fruit/nut butters stir and serve in the morning.
Cream of wheat ironically makes Cream of Rice Gluten Free

Copied some options from the hot cereal list on the 4 quarter gluten free product list
Granola/Cereal/Hot Cereal
https://ketoand.co/collections/shop/products/keto-hot-breakfast
*^ While I normally make my own nut meal porridge for on the go I use these.

https://www.wildwayoflife.com/grain-free-hot-cereal
https://www.wildwayoflife.com/grain-free-granola
^Grain free Granola and Nut based hot cereal/porridge

https://julianbakery.com/shop/?fwp_product_categories=granola-cereal&fwp_per_page=100
*^Low Carb Sugar Free Grain free Cereal


http://www.nucoconut.com/coconut-crunch/
https://www.luckyvitamin.com/p-2666363-nuco-organic-paleo-coconut-crunch-cereal-10-58-oz
*^Coconut Based Cereal that is pretty low carb one of my new favorites

https://www.chex.com/our-products/
^Chex a simple and easy go to for gluten free Cereal

http://lovegrown.com/about/our-foods/
^Grain Free Cereals, think Strawberry, chocolate and Plain O shaped cereal and different versions of kids cereals all grain free using a bean base. they also have granola.

http://www.creamofwheat-com.bg.bcdev.site/products/cream-of-rice/
^Now this is a funny one from the makers of the poison cream of wheat, we now have cream of rice for a simple instant rice gruel, and they certify it gluten free.
Granola also refer to above links for MyGerbs, Udis
Cereal also refer to Vans,
 

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I'm a big fan of eggs, great protein for the brain and especially for young kids. 

Make a bunch of little egg cups using a muffin tin (one that has never seen gluten of course), and store them in the freezer that you can get out and microwave real quick.  Spray cup with olive oil, a little gluten-free ham or turkey bacon or something like that, crack an egg in each cup, S&P, and bake them.  Let cool and freeze in big baggies or container.  I'm sure there are lots of recipes you can find on the internet.  You can work in some veggies, depending on their likes, I use broccoli, spinach, green beans, zucchini, bell pepper, cubed cooked potato, anything left over.  Later when you are sure they can tolerate cheese, you can put a few sprinkles on top, but for now, I'd leave that off until there is healing. 

My other fav breakfast is egg tacos, basically the same stuff, left over veggies, a little gluten-free meat, and scrambled eggs, corn tortillas heated in a pan until golden, and hot sauce.  You can make a big batch for several people quite easily, but I don't think the tacos is something that can be frozen ahead.

Good luck!

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On 11/6/2018 at 9:53 AM, apprehensiveengineer said:

Same. I used to eat oatmeal every single day, sometimes twice a day... so believe me when I say that I wanted oats to work very badly!

It's convenient for packed meals/traveling, and nutritionally quite good. I was very disappointed when I did the oat challenge... the results were unambiguously bad after only 2 days and I had to stop because I was so sick. It took me about 3 weeks to recover physically (iron probably got trashed - too exhausted to function), and resulted in a horrific DH outbreak. Those are not symptoms you can attribute to increased fibre intake.

One of the oats trial papers speculates that some people who experienced GI symptoms with oats might be unaccustomed to the extra dietary fibre. While this might be plausible, there wasn't really any scientific proof for this claim... yet many people/companies ran away with it.

If you look up the Wikipedia article for gluten, it classifies the avenin in oats as a gluten. However, I read a paper (I'll link it if I can find it again) detailing the reactivity of celiacs to various glutens, including avenin.

The short version is:

Avenin has a similar structure to gliadin (wheat), hordein (barley), and secalin (rye), but those three are much more similar to each other than avenin is. So the antibodies for one of them will react to the other two proteins, but avenin is different enough that most of the time they won't. Some people do react and develop the same type of antibodies to avenin as the other glutens and thus it causes the same damage.

Disclaimer: the above is from memory so I might be wrong on some of the details.

The Canadian Celiac Association has a statement on oats mentioning both the dietary fiber part AND the celiac reaction to oats, as well as guidelines on how to introduce oats into a gluten-free diet and discussing how the safety of mechanically sorted oats is not well backed up by science. In Canada, they forced Cheerios to remove the gluten-free claim because of it.

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Picking safe oats is like picking safe anything, really. I'm not a great oats eater so I can't recommend brands to you, but I have seen some that state on the packaging that they are grown in an exclusive field--no crop rotations, so no wheat contamination possible in the crops. And then processed in a gluten-free facilty, where NO wheat products are handled, so again there is no cross-contamination possible.

 Go online, look at places like Thrive Market, you'll find various brands that state their gluten "free" basis. There's a freeze-dried meal company (PackIt Gourmet) which has an incredibly honest statement, that they prepare "Gluten friendly" products, but since they can't certify the sources, and they keep their kitchens clean but again, they aren't subjecting them to lab tests, that their "Gluten friendly" products shouldn't have any gluten in them--but they can't swear that. I call that honesty.

 If the product, or the vendor, doesn't expressly say their entire operation is certified gluten-free and doesn't handle any wheat...then there's always a chance of cross-contamination. (Which really means that someone just hasn't been doing a proper job of cleaning, doesn't it? Do you want to buy anything from a company that can't clean their equipment?)

If you want to "trust but verify" then using something like a NIMA tester to actually test some of the oatmeal would be very much worth the time. Expensive for one shot use, but not unreasonable to use as a way to check the goods from one particular vendor from time to time. If the vendor flunks, even once? Scratch off that vendor, they have a problem.

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6 hours ago, seerwatch77 said:

If you look up the Wikipedia article for gluten, it classifies the avenin in oats as a gluten. However, I read a paper (I'll link it if I can find it again) detailing the reactivity of celiacs to various glutens, including avenin.

The short version is:

Avenin has a similar structure to gliadin (wheat), hordein (barley), and secalin (rye), but those three are much more similar to each other than avenin is. So the antibodies for one of them will react to the other two proteins, but avenin is different enough that most of the time they won't. Some people do react and develop the same type of antibodies to avenin as the other glutens and thus it causes the same damage.

Disclaimer: the above is from memory so I might be wrong on some of the details.

The Canadian Celiac Association has a statement on oats mentioning both the dietary fiber part AND the celiac reaction to oats, as well as guidelines on how to introduce oats into a gluten-free diet and discussing how the safety of mechanically sorted oats is not well backed up by science. In Canada, they forced Cheerios to remove the gluten-free claim because of it.

This is good for people to know (I was already aware of this, but you explained it well!). My hypothesis  is that some of the difference is from the variations in HLA DQ genes. It has been shown that T-cells from people with 2.5 vs. 8 vs. 2.2 vs. others grab on to different parts of the "gluten molecule" (usually gliadin in the studies). For this reason, the vaccine that's in clinical trials right now will only work for DQ 2.5 people.

It might be plausible that this could explain why some react to avenin to different extents, and perhaps why some seem to react to barley and rye more/less than others. I know that I seem to react a lot more strongly to oats and barley than other folks. Unfortunately, my area is not molecular biology/genetics, so I can't do much more than speculate (and hope for studies!).

Here's the link to the CCA oat challenge guidelines/other safety comments, which I did follow in 2015: https://www.celiac.ca/oats-statement/

As I said before, I don't buy the fibre thing. It was a speculative comment in the discussion, which is an opinion, not a fact. They were trying to explain why some people who ate oats seemed to experience GI symptoms in absence of positive bloods/endoscopy. Could be true, but also could be true that the sensitivity of the tests they did were not sufficient to capture low-level damage that occurred during the relatively short-term of the studies. Without testing other high fibre foods to see if the effect was similar (not done as far as I am aware), there is no scientific basis for that comment.

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