Coeliac disease - symptoms after being glutened

[Tilly0921]

I'm curious what people's symptoms are. My son is 5 years old and after just cross contamination my son will be sick 15 time within a 2 hour window whilst fainting, more often than not ending up in A&E.
Although he will always have coeliac disease, I am hoping the sickness may subside with age as his stomach grows stronger with age.

Unfortunately, it's unlikely to do that, as it's an autoimmune disease entirely dependent upon avoiding gluten, not anything to do with having a 'strong stomach'.

Other symptoms can include bloating, diarrhoea, constipation, pain and then there are the other aspects, such as skin involvement.

Dd projectile vomits for quite a while, along with almost seeming drunk. Can’t walk, staggers about, barely makes sense. And is then wiped out for 48 hours. Like in bed for 48 hours. Never taken her to a&e though, not sure they can do anything?

The sickness is unlikely to change, in fact if anything it could get worse as his villi heal and increase the absorption surface area in his digestive system.

I know childrens stomach are weaker than adults, I'm just hoping this improves with age. It just concerns me, as if he is still this way as an adult he will need me on speed dial, due to passing out whilst vomiting. It's very scary. Very worrying as a parent. We are a 100% GF household but have recently been on holiday and the hotel didn't get it right on a particular day and ended up with emergency doctor which resulted in an ambulance taking him to hospital.

@CamillaMacauley we are in the same boat as you here. My son bounces back very quickly though. It's very intense in a short period of time. His temp drops to 34.6 which is generally why we end up in A&E due to the concern of sepsis according to 111.

I start yawning really quickly, then I start looking 3 years pregnant, then I need the loo ! All this within 2 hours - I’m then tired and wiped out for a few days,

Dd is an adult now and I do worry about this. She’s currently travelling and has been travelling on her own and it scares me as she’d be very vulnerable if on her own and it happened. She’s moving away to uni in September and I have the whole worry about her sharing a kitchen with strangers, not having support if she’s ill. She will just have to cope though I guess.

interesting that your sons temp drops, I’ve never checked DD’s. I wonder what causes that.

I am in my 60s. I feel an overwhelming feeling of tiredness and can begin to shake a bit. Then l throw up. Once the offending food is gone l feel better but all l can think about is going to bed.
I can also get itcy skin especially on my elbows and under my arms.

@CamillaMacauley the only reason I checked his temp is because I was talking to another mum at his consultant appointment few years back and she mentioned about her daughter's temperature dropping and that it's scary when it does. So, each time it happens I take his temp. My son was diagnosed 14 months old and he has now be glutened 5 times from meals out including our recent holiday and each time his temp drops.

@CamillaMacauley I feel for you and completely understand where you are coming from with your concerns. We have to let them live but hope their friends will look after them like we do in their teen/ adult years. X

The fainting is most likely from dehydration from losing so much fluid in such a short period of time. Unfortunately the reaction probably won't change over time but I'm thinking maybe as he grows bigger the vomiting will be less likely to cause the dehydration and fainting part?

One of my adult DC is coeliac, diagnosed at 12. His symptoms includes vomiting, a migraine type of attack and basically being wiped out for 24 hours.
On the plus side, he can cope with a small amount of cross contamination now. Eg, he can have a pub meal that has gluten free ingredients (say chips) but have sometimes been cooked in a normal fryer. He can also have a single beer - two is too many - he discovered this at Uni 🙄
He has travelled around Asia without a problem, although he did say the gluten free plane food was vile.
He will always be a coeliac, but he either isn’t as sensitive now or he’s got used to it. Not sure if that will be helpful or not.

I don’t vomit or really have nausea, just bad bad diarrhoea. But it differs between people and I don’t know if the reaction changes over time. Mine hasn’t but I was diagnosed as a teen.

I agree with @Realisation14that the effects of the vomiting might not be so severe as to cause fainting.

My GD is 5 and she has been glutened twice at school.
She didn’t have any obvious instant side effects but her constipation became hideous again for 2-3 weeks and very lethargic with pot belly for few weeks.

Abdominal pain so bad she can’t think of anything else. Migraine. Feeling fluey and faint.
DD is 7 years post diagnosis now, the reaction is still the same severity but it doesn’t last as long: 4 days rather than 7.
A few weeks after being glutened DD also gets a very low mood, it’s heartbreaking and harder to see than the physical symptoms.

DD also feels faint when glutened. I think it’s because her blood pressure drops.

I have fainted in the past when vomiting (nothing to do with Coeliac disease), it’s all to do with the vagus nerve.

Mine has got worse with age.

I've only been knowingly gluttened once since a recent diagnosis and I got a migraine and felt spaced out and dizzy and had to lie down all day. It took a few days to feel normalish. I got an episode of diarrhoea 2-3 days after I consumed the food item. I assume it was related as I hadn't had diarrhoea for many years.

Awaiting diagnosis but pretty certain it's ceoliac. Super sensitive so with cross contamination I get bloating pretty quickly followed by upset stomach in coming days after with headache, general unwell feeling & extreme fatigue. I get a lot of phlegm which makes me sick but not sure yet if it's connected

He needs to be careful about that. Even if he doesn’t get immediate symptoms it will still be damaging his gut and can cause malnutrition and malabsorption which can lead to longer term complications. There is no such thing as getting “less sensitive” or “getting used to it” if you are coeliac.

I start vomiting within about 45 minutes of eating it. In the last episode, I had 111 service advised to take antihistamines and go to the hospital if the vomiting didn't stop within 24 hours. I am less ill having accidentally eaten it than before I was diagnosed.

@notapizzaeater I’m not coeliac but developed a certain amount of gluten intolerance post covid strangely , and one of the first things I get always if I have gluten ( knowingly or not - and I occasionally do risk an odd sandwich or something) is non stop yawning ( like every minute) and bloating and then it just stops after a few hours. I’ve never seen anyone mentioning the yawning before -

All of the above, and I have a weird almost period pain across my guts at hip level. That's normally how I know I have been glutened and not lactosed as the effects are quite similar. Many coeliacs are lactose intolerant too. For some it passes, but I'm still very lactose intolerant 12 years after going gluten and lactose free.

I hope you and your son continue to find good ways to manage his condition. It must be a difficult time for diagnosis. However it will help with managing the effects in later life.

I became lactose intolerant a few months ago, I’ve been using lactase tablets off Amazon and can tolerate it now. We use lactose free milk and stuff at home but been a good send when out

I just wanted to add to this thread to make a few things clear for people who may come across it and might get confused.

Lactose intolerance and coeliac disease are completely different (although of course you can be both and coeliac disease can cause lactose intolerance). Lactose intolerance is a deficiency of the lactase enzyme and is often genetic. Although it can be brought on by conditions such as gastroenteritis and coeliac disease. Because is a lack of an enzyme people with lactose intolerance can often tolerate a little bit of lactose and they can also take an enzyme which may allow them to consume lactose safely as a pp has mentioned.

Coeliac disease is an autoimmune disorder that causes the immune system to attack and damage and flatten the “villi” in the small intestine - this immune response is triggered by consuming gluten. This will happen whether or not the affected person has any immediate symptoms.

When the villi ate flattened the small bowel can’t absorb nutrients from food leading to deficiencies and, over time the malnutrition can result in various health issues such as osteoporosis, neurological issues, heart failure etc. The effects of the auto immune attack can last for some time after the gluten is eaten - from a few days to several weeks or months.

The NHS website says:

“It's a common misconception that eating a little gluten will not harm you. Eating even tiny amounts can trigger symptoms of coeliac disease and increase your risk of developing complications.”

There are miniscule amounts in gluten free food (less than 20ppm) and that is deemed “safe”. Other sources say 10mg of gluten is ok which is equivalent of a crumb of bread. So this gives you an indication of how little gluten is needed to trigger the autoimmune reaction.

Hope that helps someone.

https://www.nhs.uk/conditions/coeliac-disease/complications/

I became gluten intolerant after Covid too. Doctors saying l had the gene but something needs to trigger it and l believe it was a bad case of Covid. I was in my early 60s! My main symptoms were a rash and lower stomach pain. There is a strong history of coeliac disease in my family. After eating gluten all my life l will now vomit for 12 hours after a small amount eg in a sauce l believed was gluten free. Its an absolute pain but l have adapted..reluctantly!
For the son who had a beer at college he should stick to cider as even minute doses is bad for his gut/ bowel.
Also it's not encouraged for the whole family to go gluten free as that may make each person intolerant when there is no need.