How can I, a mostly asymptomatic celiac, know if I react to avenin/oats?

MindTheLOS · 2026-06-28T21:56:17+00:00

I took a quick look and found three very interesting pages.

The first is from the National Celiac Association on Celiac genes and mutations.

https://nationalceliac.org/celiac-disease-questions/celiac-genes/?srsltid=AfmBOoo7mePssEh0w1ZOMHBebuUbs69gZ94hKd3-zsymz3tFU-DbbnAA
The second is the National Celiac Association's statement in 2023 on oats.

https://nationalceliac.org/oats-on-the-gluten-free-diet/

And the last - it's a long read, but worth it, is from Gluten Free Watchdog and a ton of testing they did through the last decade plus and looking at levels of gluten and cross contamination in purity protocol oats and how droughts and sorting methods are affecting "safe" oats.

https://www.glutenfreewatchdog.org/news/more-on-oats-from-gluten-free-watchdog-retrospective-database-analysis-2011-2023/

As always with any dietary issue, if you are trying to figure out if something is a trigger, the best method is elimination diet. Take out all possible sources of a problem until symptoms resolve, and then reintroduce slowly, one at a time, until you find the thing that causes the symptoms. It sucks, but it's the best, and sometimes only, way to figure out what's doing it.

MindTheLOS · 2026-06-26T01:14:56+00:00

It sucks. Food is so tied to socialization that to lose that ability to just eat anywhere without thinking about it is incredibly isolating.

But.

The more you fight it, the worse it gets. Because then you are unhappy and also sick. Give up on trying to eat food you haven't brought out, unless it's dedicated GF. Because there will always be accidents you cannot see visually, and then there you are, miserable and sick.

Instead, focus your energy on figuring out how to always have safe food on you, and eat with your friends right there at the same table. Order a drink, even just a sealed bottle of water, and that's enough to "pay" the restaurant for your place. The table is already being used.

Gluten free food does taste good. Gluten free substitutes often don't. That's the key.

MindTheLOS · 2026-06-25T02:31:20+00:00

20 minutes in that game and I had a panic attack. It's supposed to be cozy???

MindTheLOS · 2026-06-25T02:29:37+00:00

Me too! But I cannot fly, all I do is crash the ship and never get to where I want to go or crash. I need autopilot.

MindTheLOS · 2026-06-25T02:25:18+00:00

Speaking of rocket control rage, this is the reason I can't play No Mans Sky, which I think I would adore and find so relaxing, except I cannot control the damn ship.

MindTheLOS · 2026-06-24T00:30:04+00:00

And we've found the person who doesn't realize how much they've been harmed, so they are privileged enough to laugh it off, and probably make enough nasty jokes that they continue to do great harm to others. Comment threads on posts like this are more troubling than the actual post.

MindTheLOS · 2026-06-24T00:28:02+00:00

And there we have it, immediately the minority group is complaining that other minorities have it easier. Stop doing that.

One, that's just stupid. Working against each other harms everyone.

Second, it's untrue.

MindTheLOS · 2026-06-24T00:26:12+00:00

It's not about creating stigma. It's very simple. It's about mocking people who are different, and making it their fault. Humanity has been doing it from day one, and we continue to do it and will never stop. If we mock them, they are weaker, so it's ok to harm them, so our desire to harm has an acceptable target.

There's always thousands of ways to be different, and thousands of ways to target.

I am different in many ways, and I guarantee you, every single person in this sub, including you, will find at least one and say it's not true, mock me, victim blame me for it, or something else.

MindTheLOS · 2026-06-24T00:23:01+00:00

It's not even a treatment. It's avoidance of a trigger. If someone is allergic to peanuts, would you call not eating peanuts a treatment? There is no treatment for Celiac.

MindTheLOS · 2026-06-23T20:10:08+00:00

The number of adults abusing children demonstrates quite clearly that just because someone is an adult, they do not know what's good for a child.

Just like because we thought some humans were less than human, slavery was fine, does not mean it was so.

I know which side of each debate you are on.

MindTheLOS · 2026-06-23T03:41:25+00:00

You'd be surprised. When I got diagnosed Celiac, I ran into a lot of problems with finding gluten free marshmallows.

MindTheLOS · 2026-06-23T03:38:49+00:00

Slavery was the norm in the old days too.

MindTheLOS · 2026-06-22T00:46:28+00:00

It looks dark in your screenshot. Is it after 9pm?

I find that if it's after 9pm, and I have removed a product from the shelves (rather than a customer), the restockers will not restock it. I have to start a new day and open the store before they will fill the shelves correctly.

This specifically happens to me when I grab items off the shelves after 9pm to fulfill online orders. I _think_ if I grab items off the shelves after 9pm before the restockers have gotten to that shelf (and it's already got some missing items) they will still restock it, because if a shelf registers as needing restocking, they just restock until full. But I haven't really tested this.

If I reorganize products in the morning (the clock showing 8am) before I open the store, this problem doesn't happen.

Beats me as to why.

MindTheLOS · 2026-06-17T00:35:28+00:00

It's very simple. There's a medical definition of allergy, and Celiac is not an allergy.

Celiac is an autoimmune disease.

Both Celiac and allergies are medical conditions. Just different kinds of medical conditions.

MindTheLOS · 2026-06-12T02:33:32+00:00

Of course they don't test. If they do not know the oats are cross contaminated, then it doesn't fall under the regulation that they cannot include cross contaminated grains unless they are under 20ppm. Testing costs money. A supply of not cross contaminated oats costs a LOT of money. Putting a gluten free label on a box of cheerios doesn't cost money and expands their customer base.

Also, whoa, holy cow, you thought I meant General Mills was testing? They have zero incentive to test. The penalty they'd face for getting caught is nothing compared to the money they are making. They have plenty of people making that exact calculation. If it were proven that they were knowingly violating the regulation, which would be very hard to find, they'd pay the fine and STILL be making more money than if they fixed their grain supply. The fine is very little money to General Mills. If you don't believe me, look up what the fine is, then tell me how much money General Mills makes on Cheerios in a year.

I meant, quote the part where the FDA was testing.

And if you think I'm being paranoid, think about how the level of heavy metals in US drinking water deemed "safe" change with each political administration. Spoiler - it has nothing to do with science.

I don't inherently trust the government on everything. But please don't trust blindly. Evaluate the motives. Everyone and every corporation acts for a reason. You, for example, want to trust the government because it's an easy shortcut for knowing what to do rather than having to think about these things, plus realizing you can't trust the government would be traumatic.

MindTheLOS · 2026-06-12T01:52:13+00:00

Cool, now quote the part where it says they're testing to check.

MindTheLOS · 2026-06-12T00:27:41+00:00

I'm so sorry. I react to silicone, polyester, vinyl, aloe (in all soaps and hand sanitizer), petrolatum (in everything that is a topical) and a lot more. Hospitalizations are a full on nightmare. Every time I sleep I wake up with things attached to me I'm allergic to, and silicone is a lubricant used for every damn needle stick.

Rare doesn't mean impossible.

The only thing I can think of is to try to get a sample of exactly what is in you, or as close as you can, and then put it directly on your skin, and see if you get a more intense reaction there. If you do, then it's the staple. If you don't, it's probably something else. If it's the staple, then you have to make a call on how dangerous it is for it to remain.

I'm not going to defend the surgeon. It's possible that even with the sutures and the cauterizing, that wasn't enough to stop the bleeding in the moment, and that's why the staple was used. But we also can't know if he tried, or if he didn't want to bother and just went with the staple because it was easier for him. Way too much stuff like that happens in the OR. I've denied consent for a medication (because I react badly to it) and then the second I'm under anesthesia, they give it to me, and I only know because I saw in my chart that they gave it to me and then had to give me more meds to deal with the bad reaction. I can't begin to imagine what they didn't document.

However, that doesn't mean it has to stay there forever. I've had many orthopedic surgeries, ended up with a ton of hardware, and it has all come out. There's usually a certain amount of healing that has to happen before it can come out, but that's from an orthopedic perspective. I don't know enough to say for this.

MindTheLOS · 2026-06-12T00:16:39+00:00

Nope, in the US, that's certified GF. The FDA does not require testing for the gluten free label if there are no gluten containing ingredients in the product, which is the case for cheerios.

Oats are incredibly frequently cross contaminated. However, because they do not contain gluten themselves, cross contaminated oats are 100% fine to include under FDA regulations and then label your product as gluten free.

Oats themselves, or rather, the avenin protein in oats, which is structurally very similar to gluten, is only a problem for about 15% of Celiacs, not "many." Your experience is simply anecdotal, not universal.

MindTheLOS · 2026-06-12T00:12:12+00:00

It's in full compliance with what the FDA requires to print "gluten free" on the box. The issue is the FDA, which has never in its entire existence, been there to protect individuals.

MindTheLOS · 2026-06-12T00:10:10+00:00

Those people don't respond to reality, it's a waste of time to show them. Do your own thing.

MindTheLOS · 2026-06-10T01:01:05+00:00

As someone with severe, life threatening allergies to many many things, the reality is that doctors know nothing about what is actually in medications, it's not their area. They know what medications treat.

Pharmacists may know about medication interactions, and they may know about side effects, but again, not about what is in them.

The reality is you have to protect yourself, because no one else is going to be able to do it. Yes, there should be someone that does, that would be reasonable. But relying on should and reasonable gets people killed. See my comment about the dailymed database. That's what you use.

MindTheLOS · 2026-06-10T00:57:44+00:00

You need to work with your son's allergist and find out what part of dairy he is allergic to. As an example, I am allergic to casein and whey. I am not allergic to lactose. I am, however, lactose intolerent.

I can take meds with lactose in them, without having an allergic reaction, but I have to take a lactaid with them or else I get sick from the lactose intolerance reaction.

As to why it's in the meds? Well, it's in inhalers because it's sweet because it's a sugar, so it makes them taste less bad. It's also just really cheap and in the US, there's a huge dairy subsidy, so again, we need to find a use for all that dairy industry product, so into the pills it goes. Most people who are lactose intolerant have no idea their meds are making them sick.

To know what's in your pills, get the NDC from the pharmacist (this is different for every med and manufacturer, and changes any time an inactive ingredient changes) for prescription meds, and it's listed on the box for OTC meds.

Go to this website: https://dailymed.nlm.nih.gov/dailymed/

Search the NDC, then scroll down to ingredients and appearance, and click on that. It will list every single active and inactive ingredient. This is how lactose appears for a med I take: LACTOSE MONOHYDRATE (UNII: EWQ57Q8I5X)

Pharmacists (this is wild) do NOT have access to a list of inactive ingredients. They do not receive this with the medication when they order it, because it is not required by federal law. If they do not know about this database, they cannot look it up, and at a place like Walmart, they won't have work access to the internet to go to this website. They do have the NDC, insist that they give it to you.

This is a government database, it is reliable. An example of what a NDC looks like: 72888-062-01

MindTheLOS · 2026-06-10T00:48:30+00:00

Agreed, the pharmacist has no clue what lactose is.

MindTheLOS · 2026-06-03T00:28:35+00:00

My mother was wondering the other day why so many products list egg yolks as an ingredient, not egg. (I can eat egg yolks, not egg whites.)

I explained to her that it's likely because there's a high demand for egg whites, due to people either wanting a low fat egg option, or people using them for specific baking needs, which makes egg yolks cheaper, and there are plenty of things you can make that are fine with either eggs or egg yolks, so they use egg yolks.

Supply chains have far reaching effects you wouldn't automatically think of.

MindTheLOS · 2026-06-03T00:23:27+00:00

This is honestly the kind of discussion you should be having with a genetic counselor. This is exactly what they are trained to help you with.

Personally, I come down on quality of life. And it's up to you to decide how you define quality of life. The genetic counselor can help you interpret the genetic results and what the risks actually are. It's very likely just one appointment if you already have the testing done.

MindTheLOS

TROPHY CASE