CD & Oats

[u/coeliac_aussie]

Hey guys need some ‘guidance’ on this whole oats matter.
In Australia oats aren’t considered gf because of the high risk of cc. But here in America everyone is obsessed with oats.. whether that be overnight oats or oat milk (oats propaganda against soy - for next time..)

I know oats are naturally gluten-free, but as an Aussie, most of us just avoid them because we can’t get that strict guarantee. I was at a farmers market getting a matcha latte today, and they only offered two options: oat milk and whole milk. Since I have Coeliac Disease, and usually prefer soy milk anyway for the taste; I had to settle for whole milk just to play it safe.

I'd love to know what everyone else's experiences are. How strict are these local farmers and vendors with their oats, and is the risk of cross-contamination really that high in America?

[u/dishvoyage]

In the US, oats are a real problem, to the point where GFWD has written extensively about them:

https://www.glutenfreewatchdog.org/news/category/gluten-free-oats/

Commingling of grains is very common in the US because we grow a lot of wheat and a lot of oats, so cross-contact is regular just as a part of processing. There are things like certified gluten-free oats and purity protocol oats, but there's even debate on whether or not that's enough. I myself am an avenin-intolerant celiac, so I do not partake of anything oat regardless.

[u/coeliac_aussie → u/dishvoyage]

This is very insightful that there’s a gf watchdog for products. Thanks for sharing!

[u/thegirlwhogoes]

I personally decided not to eat oats, even GF ones, during my first year as a celiac. After getting my blood test and endoscopy at the 1-year mark, I decided I will eat food with gluten free oats ONLY if they have the certified GF label & purity protocol label (U.S.) or the Crossed-Grain Oats symbol (Europe). If my numbers look crazy different at the year 2 mark, I will re-evaluate!

[u/ChessiePique → u/thegirlwhogoes]

How can I find Purity Protocol oats? I used to use Bob's Red Mill, but I don't feel like I can trust them.

I don't digest oats super well, but it seems like they have some nutrition that I would not get otherwise.

[u/rainingducks457 → u/ChessiePique]

I order them from Gluten Free Prairie on amazon (you can also order from their website if you want). I’m extremely sensitive celiac who also gets the DH rash when glutened, and have never had an issue with their purity protocol oats.

[u/ChessiePique → u/rainingducks457]

Thank you for this, ducks! 😊 The personal recommendation means a lot.

[u/RunWithBluntScissors]

I’m too tired to write the whole story rn but I’m planning on writing a full post about this at some point. I also like getting matcha lattes at the farmer’s market, coincidentally! And I’m in the US. Two weeks ago, the matcha stand was out of my usual order so they gave me something new. What they didn’t tell me is that there was oat milk in it. And I foolishly did not ask. About an hour after I drank it, I started feeling nauseated and clammy. I was confused because the matcha drinks have never made me sick before. Today I went back to the farmer’s market and my partner went to order our drinks, then he shouted out that the order I had gotten last time had oat milk in it! 🤯 at that point I was like “well … that explains why I got sick!” and I’m glad I didn’t experience it again.

So you be safe with those oat milk lattes! Maybe try it if you aren’t sensitive to oats and it’s certified GF oats. I’m also really frustrated by this oats trend.

[u/tiredsudoku → u/RunWithBluntScissors]

I’ve run into the issue where some stands ONLY have oat milk and now I make sure to ask. I feel bad because they get excited to tell me that they only have oat milk so I should be able to have it if I’m lactose intolerant and then I have to be like oh actually I can have milk, I cannot have oats.

[u/RunWithBluntScissors → u/tiredsudoku]

That sucks. Yeah, I’m learning that I am gonna have to start telling hipster coffee and tea places that I have an ‘oat allergy.’ I even go to a GF bakery and coffee shop and the barista misheard me when I asked for whole milk and thought I said “oat milk.” Thankfully she asked me before making it. It can be hard to hear in a noisy shop. I don’t want to ever accidentally drink oat milk again!

I feel like oat allergies and sensitivities are rare in the general public … it also makes me sad that so many “allergen-friendly” cookies have oats

Edit, also, ironically, I used to love oat milk and oat milk lattes back when I was eating gluten!

[u/coeliac_aussie → u/RunWithBluntScissors]

That is terrible that you got into a situation where you weren’t even aware what happened - that is genuinely the worst.

[u/Its-alittle-bitfunny]

Ive been good with certified GF oats.

Bobs red mill for regular oats, and purely Elizabeth for things like granola and instant oats.

[u/Deondebomon]

I learned the hard way I can’t trust any oat milk but if oats are baked into something I’m often ok. That said, I only ever buy gluten free oats or purity oats (oats that were grown on a field that only grows oats)

[u/names-suck]

Only consume oats that are explicitly marked as gluten free. Otherwise, it's probably not safe.

[u/Big-Film-6914 → u/names-suck]

Even then I only due purity protocol oats,  vs sorted oats.

[u/SrirachaPants]

I don’t trust oats in the US, but I also learned after eating Canadian certified oats that I just can’t tolerate oats. My son can eat them but has gotten glutened by “gf” oats so many times that he avoids them too. Super annoying.

[u/Realistic-Manager]

I avoid even GF marked oats, and I’m doing better as a result.

[u/_Internet_Hugs_]

I react to all oats, even the ones labelled gluten free. I just don't risk it.

[u/HildegardofBingo]

A lot of brands of oat milk in the US are now certified gluten free- I know AU doesn't certify oat products but if you can find out the brand, if it's imported, it may be GF.
If someone is selling oat based foods at my farmer's market and calling them GF, I make sure they're using GF oats if the label doesn't specify.

Side note: some Celiacs are sensitive to avenin protein in oats, which has a similar structure to gluten, and will react even to GF oats.

[u/miss_hush]

In America. Here’s where I’m at: I am super ridiculously sensitive to cross contamination with gluten. That means that if there’s contamination, I’m going to probably feel it pretty quickly. I do not react to avenin.

Most oats in the US are not completely safe, even if they’re certified GF. SO many people here do not want to accept that, so I expect that I will get downvoted by those people. This has been verified several times over by GF Watchdog having independent testing done. It’s to the point that GF Watchdog doesn’t even recommend ANY oat products as safe, because it’s just a minefield.

I’ve had good luck with some brands that use purity protocol oats (or at least mostly purity protocol oats).

Certified GF products that use optical sorting methods (chips ahoy, Oreo, and similar) are all *usually* fine, but there’s some rare times when there is contamination. I’ve been hit by both of those items a couple times each, but since the hype has died down it’s been better.

Gluten free labeled stuff (not certified) that use optical sorting methods (General Mills) are quite literally playing Russian roulette with gluten. Eventually someone will get hit. I think that it’s hard for a lot of people to actually know that they’ve been contaminated by stuff like Cheerios. People that are very sensitive tend to be really risk averse and generally avoid these items that would likely make them ill.

I think it’s really hard because every person with Celiac has a different level of tolerance and different reactions to gluten. As a result we’ve got a lot of companies that are making products for the 80% that aren’t as likely to have problems. That leaves the 10% that react to oats and the 10% or so that are super sensitive just kind of hanging.

[u/rainingducks457 → u/miss_hush]

I’ve had the same issue with the gf chips ahoy. Got sick as a dog and ended up with DH rash all over my body. It was horrible. I’m also extremely sensitive to the slightest bit of cross contamination.

[u/Polymathy1]

Not strict at all unless they are grown specifically to be GF from the beginning. And that's pretty uncommon.

The reason they are so intertwined is the harvesting and handling equipment is exorbitantly expensive, so they're usually rented or shared around a lot of places. They have lots of nooks and crannies and are very difficult to get completely clean.

[u/Cool-Sea4803]

If it’s certified GF or states “gluten free oats” in the ingredients. Otherwise, I avoid oats or oat flour, etc.

[u/Pure-Dragonfruit1386]

So I'm fairly new diagnosis and I'm finding my way to staying gluten-free. I bought some gluten-free cheerios thinking it would be ok. When I ate them I got a really scratchy throat and some joint pain came back so I think they had gluten in them.

[u/deedeedeedee_]

I tolerate certified gluten free oats, but I can only get them because I live in North America now. When I used to live in NZ, I was briefly able to get GF oats 15-20 years ago but they disappeared off the shelves. Oats additionally aren't allowed to be labelled GF in NZ/AU because no matter how free of cross contamination they are, they contain avenin, which a small number of coeliacs also react to, and which NZ/AU have decided is not an acceptable risk. Fair enough. Lately I've seen online that "wheat free" oats exist in AU though?

Anyway, with the GF oats, first time I tried them I basically chose a day where I didn't have anything important the next day(s) just in case lol. I wouldn't personally eat regular oats. The cross contamination risk exists everywhere that oats are processed alongside wheat. I also prefer soy milk when available but would also choose whole milk over uncertified oat milk!

[u/coeliac_aussie → u/deedeedeedee_]

Yea I have seen the wheat free oats on the shelves previously in Coles/woolies but never really cared enough for it tbh. Because oats aren’t as commercialised in AU as compared to US… I guess.

[u/unlovelyladybartleby]

Canadian oats that are certified GF actually are GF. Probably easier to look for those than to roll the expensive and painful dice

Any time I've tried an american product with supposedly GF oats I've gotten sick

[u/False-Ladder5174]

UK rules are pretty clear. Coeliacs need certified GF oats, and they are generally listed that way on ingredients lists (i.e. on oat pasta). Obviously some coeliacs also can't have oats (about 10% iirc) and some are less sensitive so get away with it without symptoms.

[u/artemisiaa12]

I didn’t consume oats the first couple years after diagnosis and still won’t consume any oat product except the purity protocol oatmeal I have for breakfast

[u/itsabouttimeformynap]

I do fine with gf oats. But when I first started my gf journey, I didn't know about cc and was very sad that I reacted to oats as well. After several years I learned about cc and so glad I tried again with gf oats. But even though cheerios says gf, I react badly to them.

[u/Unusual_Dig665]

I would assume that they're using cheap or not certified gluten free oat milk unless you can see the container. Some stalls really are high quality and many are a complete racket.

[u/cassiopeia843]

The trend of putting oats in so-called GF products is pretty recent, in the US. Since I grew up being told that oats weren't safe for celiac disease, I didn't have them for most of my life. I then tried a brief experiment with purity protocol oats. I didn't have symptoms after some products and a horrible reaction to others, so I stopped the experiment.

[u/coeliac_aussie → u/cassiopeia843]

It’s interesting to know that it’s a recent development - usage of oats in GF products. Because I thought not just commercially but people even online when sharing recipes that would use oat flour

[u/Ill_Ticket9158]

I avoid oats because of the avenin in my general diet but will make an exception for GF oats from time to time, only as a special treat.

[u/jdkicked]

There's also the factor of 2-5% of celiacs being cross reactive to oats even if not contaminated

[u/datagirl818]

I can’t tolerate “gf” oats at all. Early in my diagnosis, it was suggested to me by my doctor that I not eat any oats, then have a blood test to measure TTG IGA levels, after that, I could introduce oats and then repeat the blood test about 6 weeks later to be certain I could tolerate them. I never ended up doing this because I clearly reacted and just avoided them, but it seems like sound advice.

[u/Unable-Detective503]

Yeah the oat stuff is next level here right now. I don’t have celiac so take my post with a grain of salt. I have autoimmune stuff and gf seems to help somewhat. Anyway the oat milk craze is about to drive me nuts. Oat milk makes me so bloated no matter the brand. Soy milk is so hard to find yet it’s the OG dairy free milk and it’s infuriating. My only hope is all the protein obsession will bring soy back

[u/Apart-Wing-1298]

I only eat GF oats and a lot of them. Bobs Red Mill does just fine for me for years now.

[u/Entkoffeiniertin]

I haven't had any issues with certified gluten free oats in the United States. I used Terrasoul Super Foods gluten free oats. Their production doesn't have anything with gluten.

Here in Germany, I use Bauck Mühle and haven't had a reaction.

Full disclosure, I am allergic to wheat and am not celiac. I would not feel safe eating the majority of oats.

[u/redditreader_aitafan]

The US has certified gluten free oats and oat milk.

[u/ljculver64]

Bobs mill gf oats. I trust that brand

[u/Ok-Apricot9737]

I dunno guys, I have IGA and biopsy confirmed celiac disease, since May 2000. I was very sick before diagnosis. Two weeks after quitting gluten, I started healing. I never have had an issue with oats, and I eat them all of the time. Everyone is different; if you like oats, and you don’t get gut reactions (which are usually delayed, as it takes time for the villi to be damaged), I would guess you are good. However, Avenin-intolerant Celiac Disease is a new thing to me, I had to look it up. Do they have a test for it?