Author Topic: A question for fellow celiac patients on gluten free foods  (Read 3243 times)

Daley

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A question for fellow celiac patients on gluten free foods
« on: January 26, 2023, 02:33:18 PM »
This is mostly for the celiac people. It's gonna be a little inside baseball talk and a little gross, potentially. I kinda hate that this thread will be publicly accessible and indexed by the greater internet, but the only place that offers that potential are the journals, and this doesn't feel like a journal topic.

An interesting thing happened today with my wife when she picked up some groceries at Walmart. A Great Value house-brand product that we'd purchased in the past, that was historically tagged gluten free, was tagged no more. Worse, it had barley in the ingredient list now. (It was their BBQ chips, I wanted to try another brand I'd liked in the past to see if they also tasted like bitter and disappointment post-COVID.)

At one point, I know there was an executive in Bentonville that had celiac themselves, and for a hot minute there, Walmart was kind of a place of mercy, easily finding GF products at reasonable prices and clear labeling on products. That era has felt like it's been drawing to a close for a bit now. It also reminded me of how much harder it's been finding GF products anymore, especially raw ingredients (like nuts), and how many other products that used to be safe are now no more. I mean, heck, even infamous sponsor of the Celiac Foundation for years, Blue Diamond, stopped tagging most all their almond products gluten free back in 2021, and I found out the hard way with some low-key *ahem* my apologies for this, but... I found out due to some low-key gluten poops. Sorry 'bout that.

I've honestly had to manage post-celiac diagnosis on our own without medical assistance or a community to fall back on, through a lot of trial-and-error for over a decade (got the diagnosis in a free clinic - antigen positive, never biopsied, but my occasional ER visits with grossly inflamed small intestines with vomiting and neurological problems literally stopped about a month after we went serious gluten free). Through trial and error and experimentation back in the early days, we figured out my sensitivity fell somewhere around the 15ppm mark. Luckier than a lot, but still potentially problematic with the FDA 20ppm "gluten free" label if the item isn't cut with other food at the same time. I know there can be mineral absorption issues for folks like us, and my own hunt and peck supplementation over the past few years and recent blood work indicate I'm definitely in that camp.

Although I haven't had a serious flare-up from gluten exposure bad enough to shut things down for a couple days for a good long time, I'm now starting to wonder. Some of my tremors have been coming back the past couple years. And I noticed something recently reading up again on celiac patients with vitamin/mineral absorption issues I don't think I caught before. In theory, after enough time going gluten free, your small intestines should heal enough to minimize the absorption issues, leading to needing to take less supplementation. I'm needing to take a crap ton of supplements. The magnesium, potassium, B vitamins, zinc, calcium...

Something's clearly not right in Daleyville, and it's got me thinking and asking questions.

Which brings me to a couple questions for folks here either in the camp directly or adjacent through family members, like @Frugal Lizard, @Dollar Slice, @grantmeaname, @OtherJen, and @K_in_the_kitchen (that I've known of who're still active and appear to fall into this category of people): Is it just me, or has you/your loved one's physical/gastric health seemed to be sliding more since the beginning of the pandemic as well? Are you/they finding it harder to find GF foods these days, too? Are you also finding more and more products that used to be safe are no longer?

If there are others kicking around the forums that I don't know about, I'd love to hear your experiences as well.

RetiredAt63

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Re: A question for fellow celiac patients on gluten free foods
« Reply #1 on: January 26, 2023, 03:19:50 PM »
I'm gluten-free too, have been for over 20 years.

I got here from a different direction - I had bad GERD, found that when I went low-carb I was good, but if I ate a fair amount of carbs it came back.  It came back worse, with fewer carbs eaten, if the carbs were from wheat.  So a sweet dessert would be bad but a brownie would be worse.  I was never formally diagnosed.  I don't think they even had gluten-sensitivity tests then.

I also had elevated blood glucose (as my doctor said, pre-pre-diabetic) and going low carb took care of that.

It was both easier and harder back then, because there were very few food substitutes that were gluten-free.  Now I can find gluten-free flour and pasta and crackers and bread.  I had basically cut all of those out.  I have found over the last few years my carb intake has gone back up a bit and I very recently cut way back on carbs, all processed carbs.  Even before while I was back-sliding I wasn't eating chips (except Que Paso gluten-free corn chips).

My solutions, which may not work for you, are to 1. eat low-carb and 2. basically cook almost everything from scratch.  I am lucky that we have Bulk Barn in Canada, because I can buy lots of reasonably-priced seeds and nuts without worry.  If I have a concern the cashiers have a complete list and can check on any item for me.

But basically I shop around the edges of the store.  I wasn't a big chips eater (basically because if I had a bag of chips I would eat the whole thing, so they just didn't come in the house), but now even pop-corn is a bit too carby for me.  I do best when I just stop eating grass seeds, all grass seeds, so wheat and its relatives and corn and rice.  Quinoa isn't a grass seed and I find I am OK with it in small quantities.

And yes, I check gluten-free status for processed foods every time I buy them.  I can find gluten-free items and nongluten-free items made by the same company in the same category - i.e. VH has some Asian foods that are GF and others that aren't. And it doesn't have to be much to get me - gluten-containing soy sauce will get me, and how much soy sauce is in a dish?  The other thing is that wheat hides under a bunch of other names and a lot of them are not safe either.   Labels, labels.

I used to know someone (she isn't dead, just moved far far away) who was celiac and what she went through to have a clean diet made my efforts look amateurish.  It is hard.

Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #2 on: January 26, 2023, 03:35:57 PM »
I'm gluten-free too, have been for over 20 years.
[snip]
My solutions, which may not work for you, are to 1. eat low-carb and 2. basically cook almost everything from scratch.
[snip]
Labels, labels.

I used to know someone (she isn't dead, just moved far far away) who was celiac and what she went through to have a clean diet made my efforts look amateurish.  It is hard.

Appreciate the feedback. Unfortunately, your solutions are already things we do. I already eat low carb (though that's been getting harder to do due to budget), and we already make a lot of stuff from scratch, bread and tortillas included. The chips were one of those rare treat things, but it sparked the larger questions.

And yes, we are thorough label readers, which is why we've noticed so many products down here in the states that used to be safe that are no more. Even whole foods and ingredients. It's like there's been a bulk food supply chain consolidation here in the states and now everything's marked with cross-contamination warnings on products that used to be sold, marked as, and should be gluten free. Been at it for over a decade. Actually used to manage it really well. Doesn't seem to be the case much, anymore.

And yes, it is really hard. I'm wondering if it's been getting increasingly harder for others, too.
« Last Edit: January 26, 2023, 03:43:19 PM by Daley »

Frugal Lizard

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Re: A question for fellow celiac patients on gluten free foods
« Reply #3 on: January 26, 2023, 04:01:40 PM »
I am having mixed experience with eating gluten free -still. I have been trying to each GF for 31 years this spring. Last fall I accidentally bought the wrong soy sauce and couldn't understand how I was getting glutened until I noticed my fancy expensive organic soy sauce wasn't Tamari soy sauce. In my experience, organic certification often also means an item is gluten free, but not always. oyoyoy!

Despite restaurants claiming they are gluten free dishes, I almost always feel glutened. 

I do a huge amount of scratch cooking to keep myself feeling OK. I grow a ton of food and work hard to preserve it and then to eat down the stored items.

I live in a pretty celiac friendly area. Shelves are well stocked with large gluten free sections at all our grocery stores. Sourcing raw ingredients here is fairly easy but pricey. We do a bulk of our shopping at small health food type stores to get bulk nuts, pulses and exotic spices/ingredients.

There are !two! gluten free bakeries in our town now!
A small business is making a 1 cup jars of the key ingredients in exotic dishes. You add the protein, coconut milk or tomatoes or water and they have taken care of all the spices, exotic pastes etc. They have a dozen flavours to make a variety of Caribbean, Eastern, Asian, African dishes. They are a gluten free company. The jars are pretty pricey, but everything I have made has been restaurant quality/exotic delicious.  They add about $7CAN to a meal for 8.

I have been trying to prevent middle age spread so I have been trying not to buy snacks and treats. I have gotten pretty good over the years at baking. My gluten free granola is delicious - but $$$. Gluten free oats from Western Canada and sliced almonds are the main ingredients. I add hemp, walnuts, desiccated coconut and quinoa, tons of dried fruit. Delicious with homemade yogurt and berries or cherries from my freezer. 

In the summer I do a lot of dehydrating so I can eat really sweet treat such as nectarine slices as chewy candy. I don't avoid carbs per se, but my waist line indicates I should. I have also started pressure canning recently and am enjoying the convenience of opening a jar of homemade soup and heat'n'serve.

Overall I find it easier to eat gluten free now than at any other point in my gluten free period. I am fortunately unconstrained by a budget. I grew up in a very poor household with rationed foods and I overcompensate the other way. I ease my guilt by growing most of my fresh produce and by stocking the larder for when it is out of season. 

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Re: A question for fellow celiac patients on gluten free foods
« Reply #4 on: January 26, 2023, 04:05:53 PM »
I have Celiac (diagnosed about 12 years ago).  I can't speak to GF foods question because I (like @RetiredAt63) rely 95% of the time on one-ingredient foods (e.g. meats, dry beans, fresh produce).  If I do buy chips, I buy plain ones (potato or tortilla) as there is less chance of encountering dairy (secondary food intolerance) and gluten.  Barley is used in a lot of flavorings/coatings.  I read the label every time (and that's exhausting so I understand your frustration). 

As far as stores, I've had the best luck with labeling at Aldi and Costco. I don't live near a Costco, but I stock up on things when I can go or a friend can go. Target is also fairly good, particularly if you "pre-shop" and read the nutritional label online before you go.  As far as treats go, I've moved to making my own or just buying the same "safe" thing over and over.  I feel like I spend 50% of my cognitive energy on food and I can't afford to spend any more, so I keep shopping as simple as possible. 

I will also add that I've had Covid twice (once in early 2020 and again in 2022).  Each time my body went bonkers.  Every single food intolerance I'd had when I was diagnosed with Celiac in 2011 (e.g. dairy, corn, rice, quinoa, GF grains) came back with a vengeance for about 7-8 months. I basically went back on a strict elimination diet until things calmed down. So, N=2 (both me), but I share since I know you've recently had Covid.

I'm sorry that you're having a hard time.  Celiac is a beast to deal with.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #5 on: January 26, 2023, 04:07:46 PM »
I don’t have this issue, but it’s interesting that you have noticed food changes since Covid.  I suspect it’s all due to supply chain problems, as lots of more unusual varieties of foods are no longer being made.  Companies seem to be sticking to the basics in order to ensure adequate amounts of products.

Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #6 on: January 26, 2023, 06:12:56 PM »
Despite restaurants claiming they are gluten free dishes, I almost always feel glutened.
[snip]
I live in a pretty celiac friendly area. Shelves are well stocked with large gluten free sections at all our grocery stores. Sourcing raw ingredients here is fairly easy but pricey. We do a bulk of our shopping at small health food type stores to get bulk nuts, pulses and exotic spices/ingredients.
[snip]
Overall I find it easier to eat gluten free now than at any other point in my gluten free period.

Yeah, the eating out thing stopped for us not long after my diagnosis, honestly. Same with eating over at other people's houses.

It's honestly starting to sound like it may be more of a US-based problem, given the reports coming in from the Canadian contingent.

We try to stick to mostly whole-food products, and we honestly try not to buy a *lot* of pre-manufactured stuff, but it's honestly getting harder to do that around here. We're finding more whole foods that simply aren't gluten free anymore outside of meat, dairy, fresh produce and eggs, and expensive processed food stuffs certified GF are still around, but the cheaper stuff and the basics are vanishing.



I will also add that I've had Covid twice (once in early 2020 and again in 2022).  Each time my body went bonkers.  Every single food intolerance I'd had when I was diagnosed with Celiac in 2011 (e.g. dairy, corn, rice, quinoa, GF grains) came back with a vengeance for about 7-8 months. I basically went back on a strict elimination diet until things calmed down. So, N=2 (both me), but I share since I know you've recently had Covid.

Interesting. Wonder if it's flared up things on my end, too, possibly with new things even. Great, as if I don't have enough dietary restrictions and allergies myself as is. Also, looks like we were diagnosed the same year. Heh.

I know I've talked about chips and a celebration cake, but these sorts of things really are outliers in our diet. But man, even the GF options down at Aldi and Costco are starting to shrink and dwindle for us, to the point that we gave up on Aldi. Example: we used to be able to get certified GF dried lentils from Aldi for cheap, now, the only even remotely GF labeled lentils we can find now at a reasonable price are Arrowhead Mills at twice the price as the wheat warning stuff locally, and we have to order it online. TJ's used to have GF labeled lentils back in the day, too, but they always bothered me and the label disappeared after the FDA 20ppm definition. The only local option now is certified GF lentils at three times the price. It's almost getting easier to find GF bean and lentil options in the canned food aisle, and there's not a lot of options there, either. It's hard to survive on lentils when the lentils start to approach the price of the cheap cuts of kosher meat per pound.



I don’t have this issue, but it’s interesting that you have noticed food changes since Covid.  I suspect it’s all due to supply chain problems, as lots of more unusual varieties of foods are no longer being made.  Companies seem to be sticking to the basics in order to ensure adequate amounts of products.

Yup, and exactly... but I'm curious if it's a regional thing, a US thing, or general supply chain thing. I really don't know any others with the disease, so it's hard to tell if it's a just us or everyone's suffering sort of thing. Why I felt moved to start the thread... that, and frustration about formerly GF labeled foods quietly vanishing that statement without notice.

Dollar Slice

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Re: A question for fellow celiac patients on gluten free foods
« Reply #7 on: January 26, 2023, 06:27:09 PM »
My family member with celiac lives in a suburb of Boston, so I suspect there are a lot more stores and specialty stores there to choose from that sell brands that are dedicated to being gluten free. She is also a lot less sensitive to gluten than you, so it may not come up as much in terms of foods not being able to swear they are not made in a gluten free facility. She was diagnosed by a doctor (not one of those people that just "decides" to be celiac because it's a diet fad) but she's not someone who will have a major consequence from a tiny cross-contamination. She's generally OK as long as wheat is not an ingredient. (Of course in restaurants cross-contamination from things like flour or breadcrumbs may be more of an issue than someplace like an almond manufacturing facility, so she has to be more careful.)

In re: gluten free lentils, I just read an article about that recently... apparently they tend to crop-rotate lentils and wheat (or barley or some other gluteny grain) and that's why they tend to not be gluten free. There's always a chance you'll get stray wheat kernels in your lentils from a previous harvest in that field. But if you're willing to closely sort your lentils to spot any stray grains, and rinse them very well before cooking, you would probably be OK. I dunno, something to read up on, anyway.

RetiredAt63

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Re: A question for fellow celiac patients on gluten free foods
« Reply #8 on: January 26, 2023, 07:00:35 PM »
Frugal Lizard and I are both in Ontario so we have access to mostly the same stores.  But I keep reading about other supply chain issues that seem to be only coming from American posters, things we are seeing inflation hit but not really many shortages.

I don't eat GF oats either - I can eat them for a bit and then the GERD symptoms return.  Same with GF rice.  I have the standard esophageal damage (silent) from GERD but I could also win a burping contest with a 12 year old boy when it is bad.  That sounds funny but it means really painful abdominal swelling from all the stomach gas.  So I work very hard to keep my diet clean.

Restaurants - a good restaurant is fine, I can order meat without a sauce, and vegetables.  Fast food places, the only thing I can buy is my tea.  I know they were bad for me, but I do miss my Tim Horton doughnuts and crullers.

I ate Christmas dinner at my son-in-law's aunt's house, and she was really good about finding GF food for me.  GF appetizers, GF cornstarch for the gravy.  I was fine.

I never liked beer, so I don't miss it - it is full of gluten from the barley.

Re kosher, how close is it to halal?  My local Walmart has a surprisingly large kosher and especially halal section, and the prices are not that much higher than regular meat.  Unfortunately here meat prices are skyrocketing.

Covid plays havoc with smell (and tastebuds), so I imagine finding food you can tolerate that still tastes OK is going to be an interesting challenge.  Zinc is really important for taste buds.  Remember how smokers who quit tend to eat too much because food starts to taste so good?  It isn't just that they can smell better, it is that smoking depletes zinc and once they stop smoking their tastebuds start to get more zinc.

Michael in ABQ

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Re: A question for fellow celiac patients on gluten free foods
« Reply #9 on: January 26, 2023, 07:39:05 PM »
My wife has celiac and recently gave up on all the GF oats after she found out that they basically just test in batches to determine if there's any wheat mixed in. Bob's Red Mill GF oats are still fine but stuff like Quaker Oats she no longer trusts.

Many of the local Wal-Mart's used to have part of an aisle about two shelves wide that was dedicated to gluten free foods. It seems like those have disappeared and now the GF foods are just mixed in with the regular foods.

She had tried a few GF beers, but also decided that it wasn't worth the risk since they're not really GF but gluten removed. Basically, there is a chemical added to remove the gluten proteins during the brewing process - some breweries do this anyways to make the beer clearer. But it's not the same as the truly GF beer like something made of sorghum instead of wheat or barley. I tried that once and it was pretty bad (she was never much of a drinker so not a huge loss for her).

Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #10 on: January 26, 2023, 07:56:31 PM »
In re: gluten free lentils, I just read an article about that recently... apparently they tend to crop-rotate lentils and wheat (or barley or some other gluteny grain) and that's why they tend to not be gluten free. There's always a chance you'll get stray wheat kernels in your lentils from a previous harvest in that field. But if you're willing to closely sort your lentils to spot any stray grains, and rinse them very well before cooking, you would probably be OK. I dunno, something to read up on, anyway.

On one hand? Yay! Crop rotation! On the other hand? That may explain some of the prices now. Unfortunately, rinsing historically hasn't really been as effective as we've hoped with dry goods and me. We've tried, but...



I know they were bad for me, but I do miss my Tim Horton doughnuts and crullers.
[snip]
I never liked beer, so I don't miss it - it is full of gluten from the barley.
[snip]
Re kosher, how close is it to halal?  My local Walmart has a surprisingly large kosher and especially halal section, and the prices are not that much higher than regular meat.  Unfortunately here meat prices are skyrocketing.

Covid plays havoc with smell (and tastebuds), so I imagine finding food you can tolerate that still tastes OK is going to be an interesting challenge.  Zinc is really important for taste buds.  Remember how smokers who quit tend to eat too much because food starts to taste so good?  It isn't just that they can smell better, it is that smoking depletes zinc and once they stop smoking their tastebuds start to get more zinc.

I'll admit, I missed Timmys myself back in the day, but from what I understand, the modern stuff is a pale shadow of their formerly fresh selves. I also still have days during the summer where the idea of a cold hefeweizen with a slice of orange sounds nice... but that's the past. Cider is fine. C'est la vie.

Depending on who you ask, technically all kosher can be halal, but halal isn't necessarily kosher. Prices have always been high here, and selection scant.

Me and COVID and tastebuds and odors didn't follow the normal trajectory. My sense of taste and smell was mostly untouched, excuse the fact that the house smells different now, I can't stand the smell of the "unscented" hand soap we used for years now, I can't stand the smell of warm almond butter now, peanuts taste like what stale wet cigarette butts smell like, and apparently BBQ chips just taste bitter. Given the fact that it looks like the GI tract is in a state of anger, and zinc's one of my supplements, might be worth bumping it up a bit to see what happens, so thanks for reminding me about the zinc/smoking thing. Supplementing has just absolutely gone off the rails post-COVID for me.

Speaking of, it's still pretty easy to get vitamin and mineral supplements that're GF, but it feels like it's getting harder and harder to find GF OTC medications lately, too, an labeling isn't great with that stuff to begin with.



My wife has celiac and recently gave up on all the GF oats after she found out that they basically just test in batches to determine if there's any wheat mixed in. Bob's Red Mill GF oats are still fine but stuff like Quaker Oats she no longer trusts.

Many of the local Wal-Mart's used to have part of an aisle about two shelves wide that was dedicated to gluten free foods. It seems like those have disappeared and now the GF foods are just mixed in with the regular foods.

Now we're talking! Not just me, then. So, despite the FDA 20ppm labeling, it looks like corporations are still potentially cutting corners, and it's starting to look like the generic "gluten free" label is just as potentially worthless as it used to be. Might explain where some of the exposure may be coming from. Not great news on this end, especially for our budget and any diversity in the diet. It used to seem to mean something with the Walmart house brands, but that stuff's been vanishing from our shelves.
« Last Edit: January 26, 2023, 07:59:20 PM by Daley »

Sibley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #11 on: January 26, 2023, 09:16:30 PM »
I messaged a friend with celiac, she's in Illinois. Her report:

-She's noticed fewer products labeled gluten free in stores, all stores, but Aldi seems to be less impacted.
-She has shifted her diet almost entirely to non-American foods. Specifically, cuisines that developed historically without wheat. She eats a lot of Mexican and Latin American foods, Thai, Greek, Japanese, etc. This helps insulate her from some of what you're experiencing. The side effect of course is she has to do a lot of cooking.
-The ethnic grocery stores she shops at generally survived covid times, but there have been supply chain issues. Prices are up of course.
-She did have more problems after having covid, but it wasn't severe and there could have been other factors.

RetiredAt63

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Re: A question for fellow celiac patients on gluten free foods
« Reply #12 on: January 27, 2023, 04:43:25 AM »
Separate thought given your inflamed gut - dairy products.  How much do you drink them?  I am not lactose intolerant, and I handle cream in my tea just fine, but I found a whole glass of milk hit me.  I discovered A2 milk.  It is fine. 

Basically there was a beta-casein mutation in northern dairy breeds,, which means milk in most of North America has the new version.  A lot of people have trouble with it.  A2 is a simple recessive gene, so lots of cows still produce A2 milk - but it was getting mixed with A1 in the milk trucks.  Now they have herds and production facilities that are all A2 cows.

It is a bit more expensive (of course) but a lot easier to digest.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #13 on: January 27, 2023, 06:57:59 AM »
Let me offer you a bit of perspective from the labeling side of things. I work in the food industry, adjacent to my company's regulatory groups (perhaps this needs to just go in my bio for the number of times I bring this up).

These days, with the FDA, you need to demonstrably prove that a product which makes a claim can have said claim backed up by either a common-sense and/or scientifically supported proof of said claim. Well, technically, you don't have to (think supplements), you're going to face a lot of penalties if you're caught lying.

Allergens aren't treated lightly by the FDA nor by other first world economies. If a product makes a claim which states that it's free from an allergen, or if by omission of a claim implies that it is free from a particular allergen, then the expectation is that the manufacturer, distributor, and/or retailer of that product must be able to prove by one of the two methods above that it is free from that allergen.**

For most common sense proofs of an allergen status, it's pretty cut-and-dry. A bag of celery doesn't have to say "peanut free", because...duh. But a bottle of salad dressing which does not make an allergen claim must be able to show the FDA through its GMP's (good manufacturing practices) and its supply chain records that peanuts, at no point, enter the supply chain for that specific product.

Things get more challenging once you get to a point where the supply chain, at one point or another, may cause a product to have incidental contact with an allergen. These are circumstances where the manufacturer must demonstrably prove that its product does not contain detectable levels of said allergen. A company which makes a breakfast granola which contains almonds and one which does not must prove, through laboratory testing and GMP's, that the almond free version does not contain any detectable amount of almonds (at least if they are making a claim).

Laboratory testing for allergens is enormously challenging. It's easy to achieve reasonable accuracy, but it's incredibly difficult to achieve accuracy and precision to the extent that false positives and false negatives are statistically insignificant. The complexity of modern processed food also means that for every approved and validated method, there exist ingredients which will throw a wrench into the analysis by demonstrating cross-reactivity with the lab test. An obscure flavor compound might happen to bind to the specific antigens in the analysis in such a way that a false positive occurs. Or another compound might partially react with the allergenic protein and prevent it from binding to the test's antigen, giving a false negative. I could go on over at least 5 more paragraphs.

My point is, sometimes it's not reasonably viable to attempt to prove that a product does or does not contain an allergen. Most companies have production lines which make different products, and they are manufactured in spaces where allergens might be present in other products. This, in addition to the possibility that further up the supply chain, cross contaminations such as these may exist.

Gluten is a funny one. Like it, or not, the FDA treats it differently from other allergens such as peanut. Most people with a gluten allergy will not die within 15 minutes of contact with gluten. In fact, most people will continue to live even after ingestion (and especially ingestion of small amounts). I'm not going to comment on the ethics of this perspective, but one must admit that although in a perfect world we would treat all allergens with the same diligence and concern, reality shows that we prioritize some over others.

And so we arrive at this point - sometimes it's easier (and other times it's practically impossible to do otherwise) to omit a label claim such as "gluten free" or "dairy free", often this is donw so for a myriad of reasons. For some companies, I'm sure supply chains lend to the known or assumed inclusion of gluten containing ingredients where there formerly weren't. Some for cost, some for complexity. For others, the omission of the claim could be due to the complexity of demonstrably proving that claim. And still for others, the marketing teams might just not want to bother with the claim.

**Bringing it back to this point, that salad dressing indeed may not have peanuts in it, but the company is faced with a choice - if they make a claim, they must prove the claim. This might be easy enough to do, but it creates another challenge - the FDA might actually not want the company to make the claim unless they have a reason to do so (shared manufacturing equipment being one). If one company makes a claim, now those with a peanut allergy are going to suspect that the competitor's versions might have peanuts and will only choose the one making the claim. They're also in a corner, having to perpetually make and prove the claim at the risk of losing a customer base if they stop. But if they don't make the claim and there is a risk of illness or injury due to incidental contact, they face severe fines (up to criminal penalties) if they were caught lying. This is why a lot of products have a "made in a facility that processes x, y, z"

It's not an appealing explanation, I know - but perhaps it helps shed some light on how these things come to be.


Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #14 on: January 27, 2023, 08:19:22 AM »
I messaged a friend with celiac, she's in Illinois. Her report[...]

So, another American celiac basically reporting the same thing we're experiencing.

May have to check out Aldi again, it's been a while. Their GF options got pretty dire there for a while, and we'd given up.



It's not an appealing explanation, I know - but perhaps it helps shed some light on how these things come to be.

Thanks for the insider perspective. Somehow, none of this surprises me.

Exceptional American late-stage Capitalism wants to kill poor, old and indigent via indifference to ensure glorious perpetuation of capital unless they can be easily sued for it. So, next quarter thinking business as usual. I'd apparently be better off emigrating to Canada if they'd have me. Gotcha.
« Last Edit: January 27, 2023, 08:32:05 AM by Daley »

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Re: A question for fellow celiac patients on gluten free foods
« Reply #15 on: January 28, 2023, 07:25:20 PM »
I'm celiac negative (surprisingly since I have celiac family members) but suffer from dermatologic issues, joint pain and horrible GI symptoms from eating gluten.

I shop mainly at sams club and aldi. The rest of my family eats a normal diet, and I stopped looking at the labels of most of the things they eat. I didn't know I needed to be aware there could be an issue with lentils. I don't always eat 100% GF certified foods because I have a small tolerance (probably somewhere in the 20 - 100 ppm range) and a lot of times my symptoms take 36 hours to appear and I always wonder where I went wrong. The one example I did recently find was some seasonal Aldi macarons, they used to have a clean label (but not specifically labeled GF) and their newest iteration had gluten in it. Why ruin a good macaron??!

As time has progressed, I've gotten more and more sensitive to other things too... large amounts of corn and sugar seem to affect me, and most recently the mod pizza GF and cauliflower crusts seem to cause a reaction too. Its depressing. I've never been able to digest whole oats so I avoid them generally. Occasionally I'll cook with GF oat flour, but its usually something sugary and then I'm either reacting to the oats or all the sugar.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #16 on: January 29, 2023, 05:07:00 PM »
Exceptional American late-stage Capitalism wants to kill poor, old and indigent via indifference to ensure glorious perpetuation of capital unless they can be easily sued for it. So, next quarter thinking business as usual. I'd apparently be better off emigrating to Canada if they'd have me. Gotcha.

Because early stage capitalism, or mercantilism, or feudalism was great for celiacs? I guess that hunter-gatherer days were probably pretty great for celiacs.

I'm not a diagnosed celiac but I am strictly gluten free due to mysterious multi-day muscle pain. I mostly deal with this by cooking my own food. I just cooked a meal that consists of white rice, grass fed ground beef, salt, and green beans. Other than white rice I avoid grains, especially oats. Sweet potatoes are my friend.

I mostly consider being forced to cook my own food a feature and not a bug.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #17 on: January 29, 2023, 05:14:12 PM »
My perspective is slightly different because I can tolerate at ~ 30 ppm.  I live in a country where "gluten free" labelling means "no detectable gluten", which in practice means 1.0 ppm.  This means that there are a lot fewer "GF" products on the shelves here than in either the US or Europe.  And most things that pass the designation taste like cr*p.  Ironically, this means I tend to have a lot more variety in the packaged foods I can eat when I travel than when I'm at home.

I really feel for those of you whose tolerance is below the 20 ppm, so can't trust the "GF" label.

I still regularly do the ingredient check (within our nuclear family of four, I have issues with gluten, DS has issues with fish, seafood, dairy, legumes and nightshades, and DD has issues with onion - yeah, it's a lot of fun!).  It can be really frustrating when you find a stock or a sauce that fits that criteria and then they release a 'new and improved' formula.  It almost certainly ain't improved for us.

In practice, we cook and bake a lot from scratch.  When we use packaged foods, we often end up with multiple meals around the dinner table.  It's tiring, but it's necessary.  On the upside, it leads us to eat a lot healthier than we would by simply opening a packet.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #18 on: January 29, 2023, 05:52:13 PM »
I have a friend that is 75 and had issues all his life until 25 years ago he realized that he was gluten intolerant. His colon was so damaged that he lost most of it in a surgery. They cook from scratch and are very careful. When he wants carbs he eats rice based pasta, bread, beer, etc.  When he comes for dinner I either make something he can have or make for instance spaghetti and then cook his rice pasta just for him.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #19 on: January 29, 2023, 06:06:22 PM »
It can be really frustrating when you find a stock or a sauce that fits that criteria and then they release a 'new and improved' formula.  It almost certainly ain't improved for us.

I feel this. Sorry you're having to go through similar problems.



Because early stage capitalism, or mercantilism, or feudalism was great for celiacs? I guess that hunter-gatherer days were probably pretty great for celiacs.

Listen, I'm not looking to pick fights here, I'm just getting tired of an economic system that chooses to grind the lives of people up in pursuit of wealth, and am increasingly finding it a bit trying. Plus, given the building evidence of a link between the massive uptick in Celiac Disease within developed nations and Glyphosate usage linked through cytochrome P450 enzyme inhibition, kinda feels more like yet another unintended consequence of more late-stage capitalism than not... but that's for a future history book to deal with. After all, we're still in the early years of a research topic that's been inhibited and sabotaged by a corporation that has literally placed profits above product safety for decades and has spent millions trying to drown out and silence scientific studies critical of its products.

I'm not a diagnosed celiac but I am strictly gluten free due to mysterious multi-day muscle pain. I mostly deal with this by cooking my own food. I just cooked a meal that consists of white rice, grass fed ground beef, salt, and green beans. Other than white rice I avoid grains, especially oats. Sweet potatoes are my friend.

I mostly consider being forced to cook my own food a feature and not a bug.

I'm sorry that you have to live with any form of gluten intolerance, because it sucks and nobody deserves to go through that... but honestly? This response comes across as rather flippant and dismissive. What you're failing to understand is that it's becoming increasingly evident that due to supply chain cross-contamination issues, it's getting more difficult for folks with actual celiac to find clean food, even as basic whole food ingredients in the United States. But then, you wouldn't know that, because you don't actually have to live with celiac disease. So please, keep telling me, a celiac patient who never eats out, and rarely buys pre-prepared foods, and has been cooking nearly everything eaten for the past twelve years from scratch, and has found it increasingly difficult to find clean food for the past three years and has reiterated those statements repeatedly in the thread you responded to how much he just needs to cook his own food.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #20 on: January 29, 2023, 08:47:38 PM »
Look, I don't want to dissuade folks without the condition from commenting, but I think it's important to highlight exactly how severe and different gluten intolerance is in celiac patients from people who may more casually eat "gluten free".

Let's talk about what 10ppm, or parts per million actually looks like.

One million grains of rice? That's roughly about 4kg, or 8.8lbs of rice. Now, replace just ten of those rice grains with ten wheat kernels. From a scale perspective, that's all it takes to contaminate all four kilograms of rice, just ten tiny kernels of wheat.

Now, think about how much wheat flour/dust can spread around and get everywhere, and how much dust those ten kernels of wheat can actually make and get everywhere, including the nooks and crannies of the imperfect shapes of the grains and legumes and other dry good staples that might get cross-contaminated with this stuff in storage and in shipping and factories.

We're literally talking about levels of cross-contamination so dilute, that there are literal quack homeopathic medicine doses with a higher ratio of actual stuff to water than it takes to make a celiac sick and cause their immune system to tear apart their small intestine.

So, before another non-celiac/casual gluten intolerant posts yet again, "just make your own food!" or any other advice, unless you have something like a peanut allergy yourself and temper your advice through that understanding... keep this in mind, understand how easy it is for cross-contamination to happen, and think twice before hitting the post button on what might be ridiculously tone-deaf advice... because odds are, from the perspective of a celiac, even most folks gluten intolerance really doesn't look that far removed from the fad dieters who claim to eat gluten free while doing things like drinking beer and eating doughnuts on the regular. "Oh! You can safely eat foods that don't actually say gluten free on it that isn't meat/eggs/dairy/produce, and don't even give products with ingredients like edible starch or artificial color or natural juices or tocopherols a second thought? You might as well tell me you eat Wheat Thins."

It's a really hard concept to understand on how difficult management truly is unless you've had to actually live it.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #21 on: January 29, 2023, 09:26:41 PM »
I don't have celiac or gluten sensitivity but my DW does. Our most infamous issue occurred when her birth control started coming in a new packaging. It was about a week and a half later, after carefully going over everything on our grocery list, that we realized symptoms started soon after the packaging change. We called Teva Pharmaceuticals and found out their pills now contained gluten! There was no labeling, no list of the inactive ingredient, just "hey, we're going to add one of the world's most common allergens to an existing product and disclose nothing about it unless you call us."

------------------------------------

I've discovered no one grocery store has everything we'd like.

WalMart has the best selection and prices on GF frozen processed foods, Schaar bread products, and a couple types of GF pastas.

Kroger is far superior for applying a colorful tag to products which claim themselves to be GF, which really aids in the process of shopping for things like baking supplies. However they have a huge markup on things like bread, frozen pizza, pasta, and canned soups.

Drug Emporium
(a small chain near us) has a wide selection of groceries we can get nowhere else, like Kinnikinnick frozen GF bread products (the most realistic bread you can buy - and it's also the cheapest GF bread you can buy if you get it from DE). They also have a wider selection of pastas, pasta sauces, flavorings, treats, and dairy-free items. DE is about the only place one can reliably find GF donuts and bagels.

Trader Joe's has several specific GF items we buy like their canned pre-flavored beans, frozen veggie balls, chips, certain dips, sauces, jarred veggie or tomato soup, nuts and trail mix, etc. and their prices are very reasonable. They also have large bags of oats we've had good luck with for years. However, we wouldn't want to live off TJ's alone. They simply don't have that much selection.

Natural Grocers and especially Whole Foods
are places we try to stay away from. They have lots and lots of very high quality GF items, but holy hell it costs about $60 per bag to shop there! These fancy-pants places are reserved for occasional browsing and sometimes we pick up something new and interesting. Of course, doing so is pointless because if we don't like it we just paid out the nose for it, and if we do like it we'll just feel guilty for continuing to pay out the nose for it. However if you want certain things, these are the only sellers.

The solution is to alter one's diet so that one isn't so dependent upon the expensive fake versions of things like bread, pasta, and pizza. One should also take the opportunity of being GF to cut highly-processed foods out of one's diet. Then one can generally shop at the cheapest local grocery store, because you're buying veggies, rice, beans, fruits, etc.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #22 on: January 29, 2023, 09:28:55 PM »
Because early stage capitalism, or mercantilism, or feudalism was great for celiacs? I guess that hunter-gatherer days were probably pretty great for celiacs.

Listen, I'm not looking to pick fights here, I'm just getting tired of an economic system that chooses to grind the lives of people up in pursuit of wealth, and am increasingly finding it a bit trying. Plus, given the building evidence of a link between the massive uptick in Celiac Disease within developed nations and Glyphosate usage linked through cytochrome P450 enzyme inhibition, kinda feels more like yet another unintended consequence of more late-stage capitalism than not... but that's for a future history book to deal with. After all, we're still in the early years of a research topic that's been inhibited and sabotaged by a corporation that has literally placed profits above product safety for decades and has spent millions trying to drown out and silence scientific studies critical of its products.

I agree with everything that you wrote, except the part that correlates the economic system to using dangerous chemicals on foods. That seems like a failure of government, not economics. To quote you, "I'd apparently be better off emigrating to Canada if they'd have me." But the difference in Canada isn't economics, it's government, in my opinion.

I'm not a diagnosed celiac but I am strictly gluten free due to mysterious multi-day muscle pain. I mostly deal with this by cooking my own food. I just cooked a meal that consists of white rice, grass fed ground beef, salt, and green beans. Other than white rice I avoid grains, especially oats. Sweet potatoes are my friend.

I mostly consider being forced to cook my own food a feature and not a bug.

I'm sorry that you have to live with any form of gluten intolerance, because it sucks and nobody deserves to go through that... but honestly? This response comes across as rather flippant and dismissive. What you're failing to understand is that it's becoming increasingly evident that due to supply chain cross-contamination issues, it's getting more difficult for folks with actual celiac to find clean food, even as basic whole food ingredients in the United States. But then, you wouldn't know that, because you don't actually have to live with celiac disease. So please, keep telling me, a celiac patient who never eats out, and rarely buys pre-prepared foods, and has been cooking nearly everything eaten for the past twelve years from scratch, and has found it increasingly difficult to find clean food for the past three years and has reiterated those statements repeatedly in the thread you responded to how much he just needs to cook his own food.

I spent a decade not being able to eat out (save for two restaurants with gluten free kitchens and one that I trusted to be careful). I'm very sympathetic to that. But I thought that this thread was about not being able to find gluten free packaged foods at grocery stores which I'm not all that sympathetic to, and I'm extra not sympathetic to the argument that there would be more gluten free packaged foods available without "late stage" capitalism. Perhaps I should mention that "gluten intolerance" is not the diagnosis that my allergist gave me and that I couldn't look at a bottle of soy sauce without being sick for days. But I will admit that ever since he put me on Montelukast I have been able to tolerate restaurant cross-contamination (thank god for Canadian capitalism). 

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Re: A question for fellow celiac patients on gluten free foods
« Reply #23 on: January 30, 2023, 12:03:37 AM »
I don't have celiac or gluten sensitivity but my DW does. Our most infamous issue occurred when her birth control started coming in a new packaging. It was about a week and a half later, after carefully going over everything on our grocery list, that we realized symptoms started soon after the packaging change. We called Teva Pharmaceuticals and found out their pills now contained gluten! There was no labeling, no list of the inactive ingredient, just "hey, we're going to add one of the world's most common allergens to an existing product and disclose nothing about it unless you call us."
OMG Yes!!!  Not birth control in my case, but medication is a serious source of contamination.

What's crazy is that in my country it's only in the last few years that medicines have had to comply with the same allergen disclosures as food products.

Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #24 on: January 30, 2023, 07:30:59 AM »
I don't have celiac or gluten sensitivity but my DW does. Our most infamous issue occurred when her birth control started coming in a new packaging. It was about a week and a half later, after carefully going over everything on our grocery list, that we realized symptoms started soon after the packaging change. We called Teva Pharmaceuticals and found out their pills now contained gluten! There was no labeling, no list of the inactive ingredient, just "hey, we're going to add one of the world's most common allergens to an existing product and disclose nothing about it unless you call us."

Yup. Been there with that one, too. Repeatedly. But double-up the pharmaceutical problem with a PEG allergy on top of it. It's really hard to find safe OTC non-enteric aspirin and acetaminophen for arthritis pain management. Formulations seem like they literally change between each bottle. The packaging is even identical, save for the slight product number change in three point font and the listed ingredient change on the back of the bottle. Even side by side, I doubt most people would even notice a difference between the two.



I agree with everything that you wrote, except the part that correlates the economic system to using dangerous chemicals on foods. That seems like a failure of government, not economics.

Except the government didn't get where it is in a vacuum, either. Corporations gotta have pretty deep pockets to buy off regulatory bodies and branches of government, too, to pull off shenanigans like that. Yet another feature of *gasp* late-stage capitalism! I'm sorry that you feel offended by my pointing out the catastrophic, and somewhat unintended consequences of modern business and investment banking, but maybe some people should start feeling a little more uncomfortable about where the money that's financing their retirements are coming from and what it's doing to both people and the planet. But that's a topic for another thread. Not here.

But I thought that this thread was about not being able to find gluten free packaged foods at grocery stores which I'm not all that sympathetic to

Thank you for telling me that you posted in a thread without actually reading the thread, and you mostly just wanted to knee-jerk grind an axe on someone who's critical of the MMM sacred cow that can do no wrong because "invisible hands". No, it bloody well isn't about that, dude. These were the questions posed:

Is it just me, or has you/your loved one's physical/gastric health seemed to be sliding more since the beginning of the pandemic as well? Are you/they finding it harder to find GF foods these days, too? Are you also finding more and more products that used to be safe are no longer?

Not, "what are you eating?" or, "how do I find safer processed foods?" It's a thread by a celiac for celiacs asking if they're also having a more difficult go of finding clean (and potentially even affordable) food and if their health has been deteriorating from it over the past three years. Just because the deeper questions of the thread are inspired by a bag of potato chips doesn't mean the subject is about friggin' potato chips.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #25 on: January 30, 2023, 08:06:41 AM »
I haven't noticed a lack of gf products (Oregon), but I only really buy the exclusive gf stuff (oats, flour, graham crackers for baking, bread) at a high end co-op nearby. I don't really shop at Walmart so I don't know much about their products. Maybe ordering online can be a solution?

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Re: A question for fellow celiac patients on gluten free foods
« Reply #26 on: January 30, 2023, 08:12:49 AM »
Look, I don't want to dissuade folks without the condition from commenting, but I think it's important to highlight exactly how severe and different gluten intolerance is in celiac patients from people who may more casually eat "gluten free".

 because odds are, from the perspective of a celiac, even most folks gluten intolerance really doesn't look that far removed from the fad dieters who claim to eat gluten free while doing things like drinking beer and eating doughnuts on the regular. "Oh! You can safely eat foods that don't actually say gluten free on it that isn't meat/eggs/dairy/produce, and don't even give products with ingredients like edible starch or artificial color or natural juices or tocopherols a second thought? You might as well tell me you eat Wheat Thins."

It's a really hard concept to understand on how difficult management truly is unless you've had to actually live it.

Not sure if you were specifically referring to me, but I want to say its no walk in the park to not have celiac, but to have a problem that no Dr seems to think is real.  My hands break out in pustules (dyshidrotic eczema) and then my skin peels and falls off 4 days later. It takes about 6 weeks of heavy steroidal cream that permanently thins my skin to clear it up. I have to follow a specific skin regimen and wear gloves to do basic tasks like showering (and oh hey by the way using gloves to shampoo my hair causes it to break and fall out). I carry a travel sized special bottle of soap with me everywhere I go because a single application of the wrong product will set the process back 2-3 weeks.  Sometimes I wake up and realize I've scratched all the skin off my palms in my sleep. Sometimes I can't sleep I'm so fucking itchy I want to scream. Blood streams out of my ass and I feel like I'm shitting glass shards. So I don't think my intestines are doing great either. When my hands look like this, I wonder if that's what's going on in my intestines. Sometimes its difficult to climb the stairs because my knees or feet feel like I've broken something.

I'm not some "casual fad dieter" and I don't think the other people who have posted here who have gone to great lengths to eat a gluten free diet do it to be super cool and post it on their Instagram. I've been tested twice and its negative and every Dr I've seen just wants to focus on all my environmental and chemical allergies, and won't EVEN TYPE IT INTO THE COMPUTER that gluten starts the chain of events every time. Its really fun to have my condition dismissed everywhere I go because I don't have a labeled diagnosis.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #27 on: January 30, 2023, 08:41:46 AM »
Maybe ordering online can be a solution?

That is a topic fraught with issues as well. Outside of big name processed foods which we can already get locally, trying to find clean bulk staples runs into the same problems as in person, but worse. Let me give you an example. I'm not going to name and shame the company in question, but we dealt with one supplier last year who's website swore up and down that the products they marked gluten free were gluten free and tested down to 10ppm. We make a bulk order after talking with them and hearing them claim they have multiple celiac patients buy from them regularly, and lo and behold, they don't even mark the in-house printed labels for the products in question as being gluten free on the items we receive, and instead literally have a cross-contamination warnings. Kosher? Totally marked. Country of origin? There too. Gluten Free statement? Nada.

I point this out to them on the phone, they reiterate their GF products are GF and tested and there's no cross contamination and other celiacs shop with them. I remind them that there's a wheat/peanut/soy cross-contamination warning on the custom label they printed in house. They claim that's just there for liability and it's totally GF and safe to eat. So I open the bag of sunflower seeds and have a serving.

Glutened.

I call them back, complaining. Suddenly it's all, "Well, we did put the cross-contamination warning on the bag!" Reminding them that their other staff and their own website claimed the products were gluten free mattered not. They refused to refund our money for a bunch of stuff I can't eat on technicalities, like a 14 day return window from ordering (never mind the stuff took nearly two weeks to ship) and open bags.



Not sure if you were specifically referring to me, but I want to say its no walk in the park to not have celiac, but to have a problem that no Dr seems to think is real.

Nope, not addressing you. Honest.

That was purely inspired by PDXTabs' posts to try and help catch folks perhaps not entirely like him but kinda like him up on the the exact seriousness and gravity of the situation and what's actually being talked about, so they don't snarkily give out Celiac-kindergarten advice while flexing about how badass they are cooking at home, when in reality they're not having to deal with a fraction of what the people they're criticizing are having to wrestle with.

Seriously though, Fuzzy, I understand completely. Yours is not an enviable life, and I never meant to diminish the suffering you're dealing with living with those consequences of gluten in the diet. And I know there's a lot of other forms of gluten intolerance that can be just as terrible to deal with beyond celiac, like what you're going through, or even PDXTabs for that matter! I'm sorry if what I posted felt like a personal attack against you, it was not intended as such.
« Last Edit: January 30, 2023, 09:08:46 AM by Daley »

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Re: A question for fellow celiac patients on gluten free foods
« Reply #28 on: January 30, 2023, 09:26:38 AM »
I'm not trying to turn this into the suffering olympics, there is enough misery caused by gluten to share. I just wanted to give you the perspective that if someone takes the time to be GF, they probably have something going on and even if they don't give enough details to make it real, its best if that person is given the benefit of the doubt. They might not exactly understand your situation, but there's a good chance they understand limitations and not feeling well. Even for those who slip up sometimes, they're trying... and they're trying within a medical system that is probably telling them its all in their head and there's no reason to do that.

I'm lucky enough that I don't think any GF labeled product has ever caused a flare up for me. I empathize with your situation. I think the other poster was too, whether or not it appeared like that to you. I do know a friend of a friend who has airborne reactions (migraines etc) when entering a space with gluten. I'm grateful to not have that.

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Re: A question for fellow celiac patients on gluten free foods
« Reply #29 on: January 30, 2023, 10:05:04 AM »
I'm not trying to turn this into the suffering olympics, there is enough misery caused by gluten to share.

Neither am I, and wholly agree.

This said, given the context of what's actually being asked and desirous to be talked about and the levels of intolerance being dealt with and the issues of increasing cross-contamination being encountered, and the willingness of corporations to do sleight of hand changes to their products and outright circumvent proper tolerance level testing for labeling through technicalities... you have to admit that someone with a tolerance of, say, 100ppm, is far less likely to have the context of understanding or difficulty of finding clean food or potentially be experiencing the same difficulties the past three years that I appear to be having when they don't have to label read to the point where they have to know that gluten can potentially hide in everything from artificial color to MSG just to survive.

Again, not pointing fingers at you. Honestly, it might do you well to try and tighten up the ship to actual celiac food paranoia levels.

And although I do give people who claim GF diets the benefit of the doubt on health problems, I have also run into a lot of people IRL pre-pandemic for nearly a decade who would tell me with a straight face how they eat a gluten free diet for chronic health reasons too while they're literally standing there stuffing a fucking bearclaw in their mouth in front of me as we're talking.

It was curiosity for me to find out if others were having the same difficulties, or if it's more a regional or national or growing western developed nations problem. Starting to look like a national problem, honestly, and I hope like other toxic American practices, we don't start exporting this problem around the world as well. But, perhaps you can hopefully understand that people who aren't having to keep their GF diets as tight as 20ppm or less probably aren't going to be able to provide the same sort of feedback to questions talking about difficulty of finding safe/clean foods and deterioration of their own health, or potential growing difficulty in managing the disease.

Not that other potential GF health problems aren't legitimate or difficult to manage for their own reasons, they just may be contextually irrelevant to this specific topic at hand, because the intolerance isn't literally sensitive enough to be relevant. And that's okay. Yours specifically is relevant, however, despite the lack of celiac diagnosis! Your health is directly deteriorating! Your experience is showing growing cross-contamination issues in your diet! That's relevant! And hopefully, you can see how within that context, a dude who can literally take drugs to reduce his own sensitivity to the point he can eat out in restaurants ranting against processed foods and just telling people who haven't been able to eat safely outside their own home for more than a decade to just cook more at home isn't relevant to the discussion (and a little condescending to boot), no matter how legitimate his own GF health problems are.
« Last Edit: January 30, 2023, 10:08:12 AM by Daley »

RetiredAt63

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Re: A question for fellow celiac patients on gluten free foods
« Reply #30 on: January 30, 2023, 11:03:30 AM »
Don't move to Canada.  I just looked it up and to be labelled gluten free it has to be under 20 ppm.  Maybe think Europe?  In general the EU countries are a lot stricter.

https://inspection.canada.ca/food-labels/labelling/industry/allergens-and-gluten/eng/1388152325341/1388152326591?chap=2

So for anyone who is really sensitive that is not good enough.

I've posted here that I am gluten-free because of my GERD.  I know I am fairly sensitive because I will react to even small amounts - a splash of soy sauce that is not gluten-free will get me.  I don't react with my GF soy sauce even though it may have <20ppm but >0, so most likely not celiac.

One general thing to consider (not Daley, he knows) - if someone is tested for gluten sensitivity and they have been gluten free for a long time, they may not test as sensitive.  This is because the test looks at antibodies, and if we are not eating gluten then we are not making antibodies.  Same for celiac.  So many of us who know we are sensitive would not test that way.  I'm not going to eat wheat for a few weeks to see if I test positive.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

patchyfacialhair

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Re: A question for fellow celiac patients on gluten free foods
« Reply #31 on: January 30, 2023, 11:30:40 AM »
Have you tried getting pregnant? My wife's severe gluten issues were lessened after each pregnancy, but it seems to have come back over time.

In all seriousness, I don't have much to add other than I see exactly what you're saying about the perception of limited processed food items that are ACTUALLY gluten free. My wife is now sensitive to corn and potato, in addition to gluten...so that basically means that we eat at home from scratch, and it's mostly meat and veggies and fruit. Luckily rice and beans seem to be good for her. Most GF items in the store have some form of corn/potato. On the flip side, we've seen things like cassava flour chips and tortillas that don't impact her, but the store doesn't always have that.

The other thing that we've noticed flares her up is seed oil. Staying away from that has done wonders for her. We basically only use olive oil in our house these days.


Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #32 on: January 30, 2023, 12:27:23 PM »
Have you tried getting pregnant? My wife's severe gluten issues were lessened after each pregnancy, but it seems to have come back over time.

And when I think about where the child came out! *screams in abject terror*

I hate that Bill's legacy has tainted such a brilliant bit of comedy. Context for the joke. But seriously, my wife's been trying to get me pregnant for years, but I guess I'm just infertile. *strokes beard thoughtfully* *waits for a rimshot that will never come*

In all seriousness
[snip]
The other thing that we've noticed flares her up is seed oil. Staying away from that has done wonders for her. We basically only use olive oil in our house these days.

So, more similar issues. We're a grapeseed and coconut oil house, honestly. I love olives, but I go in cycles on exactly how much they love me back.

At least I'm learning that I'm not alone in the struggle?

patchyfacialhair

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Re: A question for fellow celiac patients on gluten free foods
« Reply #33 on: January 30, 2023, 02:45:50 PM »
It certainly is a struggle, and you're not alone.

grantmeaname

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Re: A question for fellow celiac patients on gluten free foods
« Reply #34 on: January 31, 2023, 12:47:24 PM »
My better half is celiac. We've noticed her sensitivity going up the longer she's been GF, but we're not to the point where we've given up on eating out. She rolls the dice and accepts the (moderate) consequences if a place fucks up, and then we don't go there again. (Plus a lot of walking out after being seated when it becomes clear that the waitstaff doesn't know what gluten is and can't be bothered to find out.) Agree with all the comments above about avoiding convenience foods and making food yourself at home being basically table stakes.

From my perspective, there have been two big disappointments in the last year. Meijer's, the medium sized, privately owned grocery store in our end of the midwest, has gotten rid of its gluten free section in the last three months. Not scattered the GF items around the store, but actually stopped carrying them. Meijer was the sweet spot for good quality and great price, so that has been a loss for us. And the other has been Costco - all costco nuts now carry the cross process warning, and we bought oats from Costco last year that said GF on the front in big letters and then on the back had the "may contain" warning. I'm confused, assholes, did you or didn't you test the food and find out what it contained? Costco used to be a very reliable source for good quality ingredients, so I'm hopeful this is a couple of isolated missteps and not the start of a broader trend where we have very few good choices, like some of you are seeing.

I'm lucky to be in a midsize city with 7-10 grocery options, but even the best of those are looking less promising... can't imagine being in a rural area or small metro with half as many options, or less.

grantmeaname

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Re: A question for fellow celiac patients on gluten free foods
« Reply #35 on: January 31, 2023, 12:52:21 PM »
We order GF bread and pasta online from Schar (used to just get it at Meijer). Their baguette is good and their spaghetti is great - more or less identical to the real thing even in the eyes of an attentive eater who still eats gluten foods. Not cheap though. And if you ever really have an itch for a little debbie, DW loves theirs. I don't like their sandwich bread, though - I've never had a GF "white bread" or "wheat bread" that I thought was worth a damn.

fuzzy math

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Re: A question for fellow celiac patients on gluten free foods
« Reply #36 on: January 31, 2023, 01:10:19 PM »
We order GF bread and pasta online from Schar (used to just get it at Meijer). Their baguette is good and their spaghetti is great - more or less identical to the real thing even in the eyes of an attentive eater who still eats gluten foods. Not cheap though. And if you ever really have an itch for a little debbie, DW loves theirs. I don't like their sandwich bread, though - I've never had a GF "white bread" or "wheat bread" that I thought was worth a damn.

Meet the Mountain White ... https://franzglutenfree.com/collections/gluten-free-breads

fuzzy math

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Re: A question for fellow celiac patients on gluten free foods
« Reply #37 on: January 31, 2023, 01:24:21 PM »
Honestly, it might do you well to try and tighten up the ship to actual celiac food paranoia levels.


Not that other potential GF health problems aren't legitimate or difficult to manage for their own reasons, they just may be contextually irrelevant to this specific topic at hand, because the intolerance isn't literally sensitive enough to be relevant. And that's okay. Yours specifically is relevant, however, despite the lack of celiac diagnosis! Your health is directly deteriorating! Your experience is showing growing cross-contamination issues in your diet! That's relevant!

I know. Its a struggle and something I need to keep making improvements to. A year ago I lost 50 lbs, got my hypoglycemia under control which has allowed me to be better in control about what I eat. It wasn't even always possible to keep from binge eating the wrong things (despite knowing full well what would happen later) before I made those changes.

Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #38 on: January 31, 2023, 08:29:17 PM »
and we bought oats from Costco last year that said GF on the front in big letters and then on the back had the "may contain" warning. I'm confused, assholes, did you or didn't you test the food and find out what it contained?

I've run into actual Certified GF logo'd (so, tested to 10ppm) items that have also had the cross-contamination warning on the back before. I appreciate their transparency and allergen warnings, but from the purely GF standpoint, it was safe, at least for me. I cannot consistently say the same for the generic "gluten free" statement with the same allergen statements. It's technically supposed to be officially 20ppm or less, but as has been pointed out, some methods of testing produce more consistently gluten free products than others, so we typically just avoid them under general principle and past experiences. But again, I appreciate the cross contamination allergen warning. Better to have them at least be honest than be deceptive.

I don't like their sandwich bread, though - I've never had a GF "white bread" or "wheat bread" that I thought was worth a damn.

You'd be surprised how many GF breads I've encountered over the years that still triggered problems, though a couple of them it's hard to tell whether it was actually gluten or if it was the ground flax seed flour, since it can be an equal irritant. And the prices just keep getting worse as the loaves keep getting smaller. I've also yet to meet a bread (the Canyon Mountain White included, though I agree with Fuzzy Math, it's one of the least terrible on the market) that I could tolerate untoasted, but toasting saves nearly everything. Wife got a new free breadmaker for an employment anniversary from her employer, and we just gave up on store bought bread and make our own using King Arthur GF measure for measure and their basic GF bread recipe. Still gotta toast it, but fresh out of the maker with some butter's nice, too.

Normally, I'd recommend against SAD substitutes like bread, but when you can churn out a large loaf for around $3, it's faster and easier than making crepe-batter style tortillas, and makes breakfast easier. It's actually helped keep the budget down a bit.
« Last Edit: January 31, 2023, 08:31:52 PM by Daley »

Daley

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Re: A question for fellow celiac patients on gluten free foods
« Reply #39 on: January 31, 2023, 08:31:12 PM »
I know. Its a struggle and something I need to keep making improvements to. A year ago I lost 50 lbs, got my hypoglycemia under control which has allowed me to be better in control about what I eat. It wasn't even always possible to keep from binge eating the wrong things (despite knowing full well what would happen later) before I made those changes.

Hang in there, you'll make it with the rest of us... food supply willing. *sigh*

MayDay

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Re: A question for fellow celiac patients on gluten free foods
« Reply #40 on: February 03, 2023, 06:31:06 PM »
My dad was diagnosed (via biopsy) with celiac a year ago at 64. It's been a challenging transition for him because he's obviously eaten gluten for a little bit, haha.

Interestingly he doesn't seem very sensitive. He's never been glutened really. But I'm thinking it's that he feels so much better than he has the previous decade that he actually does occasionally get glutened and doesn't realize. 

This thread is making me feel very blessed that he doesn't have any other food sensitivities to complicate things. I can easily make him meals when he visits and buy any processed food that is labeled gluten free. My best source of snacks by a landslide is a local place called Mike's Discount Foods. They sell of expiring food from other places. They often have a wide variety of GF options for very cheap. I think it's all the bizarre snacks that go to whole foods but don't sell well. But for 1-2$ a bag. We also find stuff at Aldi. Currently in my freezer is GF garlic toast and one other thing I can't remember.

ETA: this is likely not helpful to the OP as we are just at the beginning of the journey so no baseline, and as I said my dad seems to be less sensitive despite having celiac.

Gremlin

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Re: A question for fellow celiac patients on gluten free foods
« Reply #41 on: February 12, 2023, 11:28:41 PM »
@Daley , I know that Coeliac Australia lobbied our government very heavily around the fact that the international standard for GF was insufficient for many coeliacs.  They commissioned and presented a number of peer reviewed studies.  I don’t know how active your local body is, but activism can work in getting standards changed.

 

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