Coeliacs and glutening

[HorseGallopingOnATomato]

Once you’d been formally diagnosed with coeliacs, and gone gluten free, did your reactions from accidental glutening get worse?

A family member has just been diagnosed and is feeling anxious that once they go gluten free, accidental glutening will cause increasingly severe and unbearable reactions.

Thank you!

My DF has been gluten free for years (diagnosed coeliac in the early 80s). Last summer, he had a bowl of normal pasta by mistake and it absolutely zero effect. He's not started eating gluten at all but his doctor said that, as his gut has healed over the years, he's better able to tolerate it. He doesn't, for example, react to soy sauce anymore.

I was diagnosed 8 years ago and I have found the three times I've had gluten by accident the reactions were pretty severe, getting worse each time. But the theory of the reaction being milder over time also makes sense to me.

Thank you! This is what he’s afraid of.

Just wondering do you do the food prep for them?

Not everyone has a severe or even detectable reaction, but it will cause inflammation. My friend (CD) used to drink a Budweiser now and then and had no unpleasant reaction but in the end her antibodies were raised and she had to stop.

For some people eliminating gluten can make you feel worse initially (esp diarrhoea, constipation), some people feel immediately better. It's not always a predictable trajectory, everyone is different.

I think the only thing your family member can do is do their best to avoid cross contamination. For some people it takes so long to get a diagnosis it feels like you're walking on eggshells while you begin to address the problem, they may relax when they get used to the new way of doing things.

Yes, although I also got better at avoiding a glutening and felt much better in myself day to day.

Yes. I can have extreme reactions now from something that’s just been cross contaminated.

I have no choice though - I have to be gluten free and so does he. Glutenings are bad but fairly short lived. My main worry is the risk of cancer from gluten, even with accidental glutenings it puts the risk up.

@quickkimchi I will be fairly regularly, it’s my DP.

I was diagnosed coeliac about 8 years ago and have been gluten free every since.
On the rare occasions I have been glutened by mistake I get severe abdominal pain, bloating (for days) and vomiting withing a couple of hours.
I understand it is different for everyone though. I met someone once who would have a visible skin reaction but no gut symptoms whatsoever.

Diagnosed 10 years ago and yes if I accidentally get glutened now my reactions are very severe. Projectile vomiting until the gluten is out of my system. Then shivers flu like for a few days - like my body recovering from the shock of the gluten. Thankfully it’s only happened 3 times - all when eating out 😢

I have been GF since diagnosis in 2017.
When I get glutened I get belly ache and am swollen/tender for a few days, and constipated. But nothing different really from before I went GF.