How often do you get 'glutened' ?

Hi

Just wondering how often folk on here get 'glutened'? So, how many times in e.g. a given year do you inadvertently ingest gluten/have a gluten reaction?

This is something I work hard to avoid but every now and again the inevitable happens, normally if I've eaten out or taken a silly risk. I no longer eat out so have done well for a while.

My concern is on the basis of reading somewhere that it can take up to a number of months for the true damage of 'glutening' to heal, but also wondering if it is ever possible to go a full year with no slip ups.

Cheers

[Hidden]

Hello Hidden I like you am very sensitive to all gluten and I got caught out a few times when first diagnosed but now read all labels and prepare my own food and my philosophy is if in doubt don't.

It does take time for out villi to recover and I had a second biopsy the year after diagnosis and my villi had fully recovered.

I do not eat any of the forbidden grains and avoid artificial sugars so my diet is much stricter than many other coeliac.

Good luck to you and I'm sorry off you've been glutenned recently as its rotten.

Jerry 😊

[BabsyWabsy in reply to Hidden]

Hi Mise, I am not coeliac, but sensitive/allergic to wheat. Where I sometimes slip up is 'gluten free' bread when eating out. Some brands use Codex wheat starch, which I cannot tolerate. But it is very awkward if they offer a gluten free option and I need to know what brand of bread it is. I get some funny looks. Schar is one, but not all of their products, and Juvela is another. I ask if I can see the packaging so I can read the ingredients on the basis that I cannot expect someone else to be responsible for my health. That said, cross contamination is an issue that is often not well understood in catering establishments and can be difficult to avoid.

[Hidden in reply to BabsyWabsy]

Hello BabsyWabsy how do you manage with wheat derivatives like caramel colours and artificial sugars like maltodextrin as wheat derivatives don't have to labelled as such in the UK or the EU. Artificial sugars are also known triggers for IBS.

Jerry 😊

[BabsyWabsy in reply to Hidden]

Luckily for me , I have worked in the food industry most of my working life, so I have a good idea about these mystery ingredients. That is also how I developed a wheat intolerance from working in a large commercial bakery as an interim quality manager. I was only there 6 weeks, but it was enough to spark my allergy off. Although they don't need to in law, sometimes you will see ' xyz from wheat', but not very often. I think it should be in the legislation to label anything derived from an allergen. Anyway, I always study ingredients labels very closely and avoid both added sugar and anything sweet (that's another story) and artificial sweeteners. Mostly I cook from scratch and try to shop locally and organic where possible. I see it as my responsibility to keep myself well and cannot expect some random stranger who works in catering to look after my health. I am well used to feeling awkward when eating out, and sometimes, when I am properly catered for, it can make me quite emotional.

[Hidden in reply to BabsyWabsy]

Hey good for you, the reason that wheat derivatives don't have to labelled as such is to save the manufacturer having to change labels if they change the source.

And because their gluten content is way below codex and codex wheat starch they are classed as gluten free.

Gluten free food manufactured in Australia is great because they have 3ppm which's undetectable gluten and none of the toxic grains so its safe for me.

I bet that it makes you feel special when someone goes out of their way to cater for you rather than be dismissive so this is applaudable.

It was such a nice meal you burst into tears...it shows how others take being able to eat anything for granted.

[BabsyWabsy in reply to Hidden]

Hi, I don't agree with the <20ppm being regarded as gluten free, and it is cumulative. In OZ they seem to take it more seriously. Codex wheat starch is a big no no for me, but I am fine with spelt and rye. Bonus.

I used to be someone who took eating out for granted. No more.

[CATRYNA49]

I am Celiac with the accompanying Celiac disorder Dermatitis Herpetiformis. I have had to go entirely grain free, but the being "glutened" is a constant, for me, as my scalp with attest to.

[Penel]

Hi Mise

Like Jerry, I got caught out a few times at the beginning. Reading every single label, twice, is a way of life now, as is being ultra careful when eating out. I sometimes feel a bit paranoid, but thankfully my family and (most) friends are understanding.

I do now eat out, having found some safe places. I avoid anything that might be a cross contamination issue, like chips, sauces.

Good luck with your recovery, it does take time I’m afraid.

[Hidden]

Sorry for delay in getting back to everyone on here. Been out of circulations so tardy with picking up on responses.

Thank you all for your responses. That's really helpful info.

I think I'm on an ever decreasing circle of tolerance to anything really now, so avoiding anything with additives full stop. Even additives that are no way from gluten sources.

Also managed to re-gluten today. Ate some smoked salmon from Morrisons. Never have issues with smoked salmon, but first time for Morrisons. Got glutened. I'd read the ingredients and stupidly did not look below to the 'allergens' bit where said it may contain gluten containing grains. Seriously, wtf!! Smoked salmon.

No matter how stringent a life I live I still f' up frequently. Ahhhhhhhhhhh!!!!!!!

Thank you all again. Think I'm just going to try to establish some sort of gluten free country somewhere that gluten or any risky cross contamination isn't allowed to cross the border. Seems the only way to ever recover and get health back. Seems entirely impossible otherwise.

[Penel in reply to Hidden]

Bad luck on the smoked salmon!

It may be that you need to restrict yourself to known safe foods until you have recovered. You may have to have a limited food selection to give your insides time to heal. We have had posters on here who restricted themselves to just chicken and rice until they felt better. Sounds drastic but might be worth considering?

[Hidden]

Thanks Penel.

At this stage I get reactions to all nuts, all seeds, all gluten-free grains and sugar so massively limited. I can't even tolerate rice or rice flour anymore.

Smoked salmon was on my safe list from the dietician, but my own fault for not reading the back of the label owing to never having issue with smoked salmon. Trying to heal damage, even with limited diet, is one step forward 10 back.

Bah humbug!

[lovejesus7]

Listen to your body sweety I try my best to avoid gluten. But my body say ok i am ok with this amount but no more

And other times my body say not today.

And listen to your doctors as well

My doctor is ok with me having a little at a time once in awhile

[Hidden in reply to lovejesus7]

Thank you for responding.

With gluten it is zero consumption of any for coeliac.

If you have coeliac and a doctor is telling you have a little gluten once in a while they are actually endangering your health and giving advice that is not in-line with health profession/medical guidelines.

Do you actually have coeliac or is it general intolerance to gluten?