If you’re coeliac, do you eat “may contains”?

[ponkaboo]

Diagnosed in Feb. Found out I was coeliac incidentally, so my symptoms are very very mild. I know that your reactions can get stronger if you’ve been GF for a while.
Since diagnosis I’ve been completely GF including nothing that’s labelled “may contain”. I’m waiting for the results of a blood test and am curious to see if my levels are now back to normal.

Im on a few FB groups but can find them quite irritating as there seems to be a lot of misinformation (huge distrust of labelling, for example) and people seem quite extreme. I don’t want to ask on them as I can predict what the responses will be like.

This is also partly inspired by a comment I saw recently either on the active AIBU thread sbout coeliac or on FB, I can’t remember, where someone said that their house was a “may contain”. I have two teens who seem to spread a trail of crumby bready destruction wherever they go!

So I’m wondering how Mumsnetters with coeliac approach “may contain“ items. As I said, I’ve avoided them completely so far. But, I’m considering allowing myself to have them occasionally as I think the risk is quite low.

I’m not coeliac but my dad is and has been for 40 years. He’s fine with ‘may contain’ and with, for example, using the same toaster as someone who has had normal bread. He was pretty sick when he was diagnosed but I think the fact that he’s had long enough that his gut has healed a lot has meant that he can tolerate the odd bit of cross-contamination. He hasn’t tried eating gluten deliberately but did accidentally eat a bowl of non-GF pasta and was fine.

DS is coeliac and we completely avoid any products with gluten listed as an ingredient, but don't worry about anything with 'may contain'. He doesn't have an immediate adverse reaction to accidental small cross-contamination though and if he did we might be more careful. His annual blood tests are always fine.

Unfortunately there is so much cross contamination and I find that accidents happen where I’m told something is gluten free but then it turns out there is contamination. Because of this, even though my reactions are usually mild like you, I deliberately steer clear of “may contain” to allow for a margin of error for accidents.

Sadly you can’t rely on symptoms as to determine this. I was completely asymptomatic and the gastroscopy found loads of damage. I’ve since become very symptomatic and if I get a reaction end up rifling through pacakging to find the inevitable “may contain” on something. Damage happens whether you react or not.

DD is coeliac, diagnosed at age 3 following tests because she was “failing to thrive”. She’s basically asymptomatic, none of the typical symptoms of gluten intolerance. She will eat “may contain” (she’s an adult now and makes her own food choices)

I’m fine with may contain and the odd bit of cross contamination too. My annual bloods are normal so this reassures me.

My adult daughter is coeliac and has been for 15/16 yrs and she won’t eat may contains at all .

I have two friends who are coeliac and neither risk may contain items.

One has turned their house almost entirely GF as she reacts to even the smallest cross contamination.

I do. Haven't had any issues.

I do yes.

Not coeliac but gluten intolerant. I avoid all 'contains gluten' foods and also 'may contain'. I had a run-in with a Wispa bar that wasn't labelled gluten free and I stupidly assumed it must be OK. It wasn't. So I make sure to look for the 'gluten free' label. I also have to avoid oats even if they are marked as gluten free.

I’m coeliac, diagnosed 23 years ago. I do eat ‘may contain’ as I’m not willing to reduce my life and choices to the degree required not to. I was the only coeliac in a house of 5 ‘muggles’ and used the same bread board (wiped) and toaster. Was always fine. Now one of my kids is also diagnosed so we have our own toaster etc. When he was diagnosed the Consultant made a point of saying not to get obsessed, as some people’s paranoia ends up in a form of orthorexia. And his opinion was that this is worse than the occasional glutening, which I agree with. I thought the recent research on shared fryers tho not conclusive was interesting.
while I do understand the long term risks of intestinal damage, it’s actually quite vague in terms of numbers. I’m happy with my choices but I guess everyone has to make their own decisions

My symptom was DH, I worked out myself that gluten was the main trigger after 3 visits to my GP and 1 dermatologist appointment. I made the necessary adjustments to my diet 6 months ago (no gluten, no oats - incl. GF oats - low iodine and dairy-free).

I can't get away with anything 'main contain' or cross-contamination-wise. I start to feel the inevitable, insane itch with 30 minutes and then I have a Hellish night.

Having written all of that, I don't want to be as extreme as some people I read about online (as you mentioned, OP). I do empathise and can understand the way they feel but I have to learn to live with it, not spend my life feeling down and anxious about it. Live with it with a capital L.

I love seeing friends and family and eating out so I am careful with menu choices; always say that I am Coeliac (and have had to put up with some rolling eyes which is really unpleasant as who would choose this?). I accept that there will be cross -contamination (we cannot live in a perfect, hermitically-sealed world), so I accept that I may have some symptoms for a couple of days afterwards (it's hard, actually because the itching is insane with DH. I always have a tube of steroid to hand and anti-histamines. I also find DAO very helpful).

If I visits family and friends or go out for a day, I take my own food.

This is the kind of post that really gives me hope. Thank you for posting! 💐Lovely to hear that your dad is better than when first diagnosed.

Nephew is coeliac. He has been gluten free for 26 years. He can be very ill from the slightest cross contamination, once from a chili powder garnish where the chili powder had been packed in the same factory where flour was handled.

No, I have an immediate reaction to gluten traces.

I eat may contains within reason , I assess the likelihood of cross contamination

I am quite sensitive - I definitely have strong reactions (I could never share a toaster and have been really ill from chips fried in the wrong oil) so I do avoid ‘may contains’. However there is one single product I love so much I will do this one ‘may contain’. So far I’ve been ok …

The coeliacs in my family are happy to eat products with 'may contain' on the label. This tends to be chocolates.
M and S do several desserts in their food to order at Christmas which we always have. They do not appear if you search gf on the website. They are not marked as gluten free or as 'may contain' but there is no gluten in the ingredients list. They are creamy though, think panna cotta etc.

Hi @ponkaboo

I know several coeliacs, (close to me,) and they do eat 'may contain gluten' food now and again, as in the majority of cases it doesn't .... Or if it does, it's a teeny tiny amount.... They just have to put 'may contain gluten' just in case.... as sometimes it may and sometimes it may not.

The people I know don't seem to have fallen foul yet, and haven't had any 'I've eaten gluten' effects. Possibly as it's been such a small amount... The specialist they saw shortly after being diagnosed, said 'you can never ever ever ever have a single tiny sugar grain sized piece of gluten again - EVERRRR!' as if it would make them very very ill if they did...

But it's not like nuts, (where you could die if you even inhale one single grain,) they won't die if they have a tiny grain of gluten, and the scaremongering is a bit much...

Everyone is different though, so you may need to suck it and see!

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The dangers of feeling ill after cross contamination are real in the case of oil and you should not eat chips in a restaurant if the oil is also used to cook gluten containing products such as battered fish.

DP is coeliac and is very strict but there are some things he risks the may contain on. Certain crisps and chocolate only because when he was younger and first diagnosed he was happier to take the risk and he was fine after eating certain things. New products he doesn’t take the chance.
that doesn’t help you much OP. I do think it’s personal chochoice though and how much risk you’re willing to take