Post #705705
2026-03-16 14:20 UTC
Replies (11)
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@tamsin@toot.wales 2026-03-16 15:31
To add - we buy GF oats, GF pasta, we eat mostly home cooked food with fresh vegetables etc. We do not share things like margarine, spreads etc. She doesn't eat out. She was diagnosed a couple of years ago, and for about a year after giving up gluten her blood tests were fine, it is only recently they have crept back up. Hence trying to find a specific culprit!
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@sus@timeloop.cafe 2026-03-16 14:26
@tamsin@toot.wales is your home kitchen a dedicated gluten free space? We also were extremely careful but i didn’t stop having trouble until everyone i live with went gf in our kitchen
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@gumnos@mastodon.bsd.cafe 2026-03-16 14:31
@tamsin@toot.wales not celiac myself, but had friends who had issues with things like Play-Doh causing problems. Have you confirmed that it's coming in via oral-consumption, or could there be other contamination vectors such as dermatological?
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@jpsays@mastodon.social 2026-03-16 14:45
@tamsin@toot.wales I would worry about even the slightest cross contamination for the _test_ specifically. As a 40-something likely-celiac, I am still glutened once every few months from who-knows-where as well, despite my efforts. I’m curious of an answer too. I found this company from Florida. They at least say “contact us” for international orders, which isn’t a no, but not a yes either. :/ I do hope you find something. https://ezgluten.com
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@gairsty@hachyderm.io 2026-03-16 14:47
@tamsin@toot.wales I'm not sure if you can get testing kits. Our eldest is very sensitive to gluten, so we stick to things that are clearly gluten-free (fruit, veg...) anything with the crossed grain logo and we avoided anything containing oats. Having separate spreads, toaster bags helps. (Apologies if you're already doing this, but these are things that caught us out!) Oats contain avenin, a protein similar to gluten, that most coeliacs are unaffected by. We suspect our eldest was possibly sensitive to it as well. Any Q's, just ask. https://www.coeliac.org.uk/ #coeliac
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@kitten_tech@fosstodon.org 2026-03-16 14:54
@tamsin@toot.wales I'd love to find something like this too. A friend and I at university floated a business idea of making real-time dietary intolerance test strips - for gluten, lactose, peanuts, even animal fats to test for vegetarian-nese, etc - but never sat down and worked out the biochemistry of how to get colour changes for each of them :-(
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@UkeleleEric@mstdn.social 2026-03-16 15:03
@tamsin@toot.wales My wife has to have a strict gf diet (for ataxia). You can get gf oats (whilst oats are gf, most oats are handled in the same premises and machinery as wheat). It's very difficult to be strict, be aware of things like shared butter dishes utensils and crockery (if someone is not on the gf diet), and also, any treats, sweets or anything from outside the home. Whilst it is possible to get gf items, they tend to be premium priced. The more home-made, home-cooked and home-grown, the better.
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@abmurrow@hachyderm.io 2026-03-16 15:09
@tamsin@toot.wales So sorry to hear this. Working around gluten is an absolute pain and I sympathize with what your daughter is going through So, first things first, if the entire house isn't gluten free, you can't guarantee cross contamination isn't happening. Especially if she is really sensitive, which it sounds like she is. I've been GF for almost 20 years now and I've had some issues with getting glutened just by being around flour. Not even (consciously) eating it. Just by being in a house (or a supermarket or a bakery) where gluten is present. Touching wheat flour gives me hives and I've gotten glutened by eating at people's houses where bread is present, so the cross contamination concern is top of mind when I read your post. I've learned how to adapt and I understand that I probably will get glutened when eating out or with friends. I'm not as sensitive as a lot of people are, so I can live with the occasional flare up, but it is something to keep in mind for very sensitive eaters Even some certified gluten free foods are processed on equipment that handle wheat, or it's hidden in ingredients like matodextrin. It's good to check upstream manufacturing especially with things like oats which are frequently a source of contamination. Definitely do your due diligence and do some tests. It'll suck, but knowing which foods are totally safe is key to reducing long term exposure. Some gluten free bread replacements actually cause more problems than they fix, so it's worth cutting replacements out until you know what the cause is Lastly, she may have multiple food sensitivities. Some non-gluten foods have proteins that cross react with gluten. Corn, rice, and oats, ironically, are sometimes cross reactive with gluten antibodies. What I did to help find my safe foods was literally just stop eating any processed food and any grains. It was steamed veggies, fresh fruit, and meat for a few weeks until I could isolate the things that set me off. You're probably already doing this or have been advisted to do so, so I won't go in depth on it. However, I was surprised to learn that this is how some people discovered they had sensitivity to unrelated foods. Sometimes that goes away once you reduce your inflammatory response, sometimes not
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@penguin42@mastodon.org.uk 2026-03-16 15:42
@tamsin@toot.wales I see ones designed for food manufacturers, they do look like they cost a fortune, never tried them. (I hear some people are sensitive to the similar protein in Oats, do you know whether the blood test picks up both of them or just gluten) https://www.kersia.uk/shop/test-kits-and-inspection-equipment/allergen-tests/romer-agrastrip-pro-range/romer-agrastrip-gluten-g12-allergen-test-strip-10-tests/
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@brendan@social.brendans-bits.com 2026-03-16 17:34
@tamsin@toot.wales Another option (because testing food is expensive) are 'gluten immunogenic peptides' or GIP test kits. These can only test retrospectively, but allow you to look back at what you have eaten / where you have been and then infer likely sources of food contamination. (I found it was a game of cat-and-mouse for the first couple of years, and A LOT of filtering out well-intentioned but uninformed misinformation)
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@NatalyaD@disabled.social 2026-03-16 22:18
@tamsin@toot.wales I don't have coeliac but I work with disabled university students in England. coeliac students often need their own kitchen space for gluten-free reasons. One coeliac student told me that at one point she was getting gluten poisoning from a certified product - I think a type of breakfast cereal which she ate a LOT of because she'd been deprived since diagnosis. Can you get some dietician advice about the foods your household is buying to identify if anything is still glutenny?