Fellow coeliacs, can you share your glutening experienes?

[Baycitystroller]

I have been diagnosed 5 years and cope well with a gf diet. I used to think of myself as a silent coeliac as seldom had bad reactions if I accidentally had gluten.

However, over the past few years I am wondering if I am developing more sensitivity. I occasionally have episodes where I’m really ill. I can’t pinpoint it to gluten so assume it’s cross contamination that’s caused it but never sure.

Symptoms are pain in left side under ribs but sometimes down to groin, fatigue, bloating, gastritis, headache. This can last days. If I had knowingly had gluten I could accept it as a reaction but I am not sure.

I have had upper and lower ab scan, bloods and a sigmoidoscopy to rule anything else out. All normal. Doc now saying IBS. Is it usual for coeliacs to develop IBS?

Do these ‘episodes’ sound like a glutening? How likely is it that I’m experiencing IBS too. Do you become more sensitive to gluten over time?

I'm not coeliac but my DH is. He was diagnosed 14 years ago. The last couple of years he's had a few reactions that he put down to gluten but recently we've pinpointed that he has developed a lactose intolerance. From doing some research this can come hand in hand with coeliac disease.

Thanks. I will look into this.

My daughter is coeliac , diagnosed for 10 yrs , she has definitely become more sensitive over the years and within the last year we’ve discovered that strawberries / anything containing strawberries causes ‘glutening’ symptoms . Apparently lots of coeliacs have issues with strawberries .

My 18 yr old son (coeliac now for 12 years) found he had less 'glutening issues' since he started taking a probiotic every day. He's really careful, looks at ingredients and quizzes staff ! He reacts almost exactly 2 hours after eating and was much worse pain than before diagnosis.

My coeliac DD has also developed lactose intolerance. We had assumed it was was some sort of gluten cross contamination, but it was lactose.

Thanks! That’s really interesting. I am looking into lactose intolerance now. The strawberries thing…. Never heard of that but cd is such a complex condition that nothing surprises me!

My sensitivity is really getting worse.

Your description of the pain you get sounds exactly like the lactose pain I get.

Also a coeliac and was advised by my consultant and dietician to drop lactose/dairy as soon as I was diagnosed - if I have milk, yoghurt, ice cream, etc. I definitely get the symptoms you describe. Interestingly it never used to be a huge issue but if I use the 'wrong' milk in my drink now I know about it within 20 minutes!

I find it really weird how reactions can change. When diagnosed I just had diarrhoea and felt generally unwell. I’ve had very few accidental glutenings but now it makes me feel horrendous till I vomit a couple of hours later.... then it settles.

Yes it does seem to change. I can’t cut out dairy as I have low bone density. Will start to look at lactose free stuff.

It’s just useful too to hear from others about reactions. Coeliac disease is a real odd one!

I managed to poison my husband yesterday...I marinated some chicken in a garlic butter rub, totally forgot it would have milk powder in it. I feel so guilty as he's been feeling unwell with stomach issues since last night. He knows I didn't do it on purpose, Ive been so good at checking everything for lactose.

Hope he’s ok. It’s an easy mistake to make.

@Floralnomad this is really interesting about the strawberries. My son is now 16 months old and was diagnosed with coeliac disease 2 months ago with TTG over 200. He has been on a strict no gluten, no dairy and not oats diet since diagnosis.
Over the past week I have been certain he has come into contact with gluten but could understand where I had gone wrong, however, he has been eating strawberries for the past week, so after reading your post, I've concluded this must be why. So thank you for posting your comment! X

Strawberries are a no go for me too.

But I'm fine with blackberries, raspberries, black currents and cherries.

Have you looked into refractory coeliac disease? Three family members have this it's difficult to diagnose as its eliminating other diseases /causes. It can be treated with autoimmune drugs /tube feeding.

Whenever I feel I've been glutened I get such sore joints, pain under my rib like you describe and yes, down to my groin. I also have a horrible achy pain all over my body and have zero energy.
I have wondered about lactose, I wonder if I should eliminate it to see if I have any improvement

I definitely become more sensitive over time. Been diagnosed 10 years. Was also most silent, had reflux and neuropathy but no bowel issues. After 5 years I would get diarrhoea when accidentally glistened. Was pretty instant and from the most unusual things such as lipsticks and lip balms.

These are potential symptoms but also could be something else as they’re common for a few conditions. For me if I have a trace amount of gluten it’s fatigue, bloating, stomach issues and shooting pains in limbs. If I ate a piece of bread or pasta it’d be diarrhoea to the point of potential ‘accidents’, fatigue and brain fog, severe shooting pains and nausea. Everyone is different though and depends on sensitivity!