to think that coeliac disease implies symptoms?

[RaspberryCoulis]

Family member has 2 teenage sons, Adam and Ben. At the beginning of lockdown, she was all over social media with posts about how Adam had been diagnosed with coeliac disease, how it had turned their house upside down, all the recipe books out the window. Died down a bit with the posting over summer. Now lo and behold Ben has been diagnosed too and the posting (and lots of talking about it) has started up again.

Lots of people questioning what the symptoms were - they had none. Ben reports "feeling odd" after eating bread.

Diagnosis - the mother (who isn't a doctor, but who is an allied professional like a physiotherapist), send blood and stool samples off in the post and received their "diagnosis".

On the one hand, going gluten free isn't going to damage their health.

On the other, it's a bit much to diagnose your teenagers with a serious illness based on an internet test, and tell them they must completely change their eating habits? (No McDonalds, no Greggs, no Subway). When they have no symptoms?

Or can you have asymptomatic coeliac disease?

Coeliac disease can be hard to diagnose.

DS was diagnosed at age 17, but didn't have any of the 'classic' symptoms. He had an investigative gastroscopy to try and find out what was causing his other symptoms, and they discovered the thing with the villi. Then had a blood test to confirm it.

Usually it's the other way round.

DS was only unwell every few months - as far as we were aware - but as soon as he switched to a GF diet his energy levels soared and he just felt 'better' although he wants aware he was ill before.

His previous symptoms could easily have been explained away by food poisoning or a bug.

@ThisBeautifulLife

Just to add, diagnosis in children is by blood markers, no endoscopy is required. They are bringing similar diagnosis in for adults under 55 years with very blood levels I believe.

I think the level for not needing the biopsy was 200 - and mine were 197

After I was diagnosed I know they recommended my parents and brother were tested

It sounds like you don’t know the details of their diagnosis. As others have said you can be asymptomatic. Often children will be diagnosed in blood tests alone without a biopsy. However, they will usually have follow up tests etc. I’d just clarify whether they have had the correct follow up supportively

You can be a silent coeliac! No symptoms but it's still doing the damage

My friend was diagnosed with coeliac disease but didn't think she had symptoms... but she was always run down, getting every infection and virus going, plus having fertility problems. She conceived shortly after she started eating gluten free. It really affects so many aspects of people's lives and is often mistaken for IBS. It is a serious disease.

Subway has a gluten free bread option now

Also her immune system has repaired and she's feeling much better. Sometimes you just think the way you feel is normal and don't connect it with the diet...

It is none of your business.

@BubblyBarbara

Subway has a gluten free bread option now

But they use the same butter for the non gluten free bread and the gluten free bread. And the same prep area. And wear the same gloves. It’s a cross contamination nightmare. Dd has sometimes been ok, sometimes she’s vomited for 2 days straight after a gluten free subway. Most people on the U.K. coeliac fb group won’t touch a subway.

There is such a thing as silent ceolicas which is what I have. I was diagnosed via an endoscopy long before the blood test was an option. I didn’t want to believe it so I then stopped eating gluten for six months and repeated the endoscopy - my stomach ville had grown back. I still didn’t want to believe it, so I then ate gluten for six months and had a third endoscopy - my stomach ville had been destroyed. This was 30 years ago. With silent coeliacs we don’t have immediate symptoms it’s more to do with our autoimmune systems. I have accidentally been given normal bread instead of gluten free bread on several occasions - I don’t have any reaction. No dirreah or vomiting like my other celiac friends. But what does happen is the inflammation in my body increases.

OH comes from a long family line of people with ‘dodgy’ guts, & the incidence of diagnosis of IBS, Crohn’s & Coeliac disease is high. Some presented with significant & severe symptoms, & others were symptomless but tested due to other issues & familial trait of Coeliac disease.

In each case diagnosis was after full investigations, panels of blood tests & endoscopies to give a firm & definitive diagnosis.

In all cases, strict gluten-free, & for some FODMAP, have made a difference to presenting symptoms, everyday wellbeing & energy levels. Endoscopies are used to check for cellular changes.

Yes you can be asymptomatic and yes diagnose for children now doesnt include a biopsy just bloods if levels high enough. Dd has coeliacs.

But he did have symptoms. He "felt odd". Although I would still be dubious of an internet test, but that's her business.

I was diagnosed with coeliac quite randomly a few years ago. Had a few blood tests and then the endoscopy to diagnose it. I've had zero symptoms though the past 3 years, makes it very hard to go gf when you see no immediate benefit to it

My son has bowel disease and was tested for celiac that's how they do it isn't it. He has chronic diorhia and sickness though

What has it got to do with you? Seriously?

They told me my sons not got it by the way but it was a poo and blood test I think.

Just so you know... subway do a gluten free option.

I was really ill before my diagnosis, I don't know if you can be asymptomatic, she'd be better off getting them properly tested though

Children do not need an endoscopy. They can be diagnosed on blood tests alone. This is also starting to happen in adult medicine too now (no biopsy just blood tests alone).
Coeliac disease is very hard for the people affected and their families as it involves massive lifestyle changes and can be very isolating for those affected as socialising is very difficult as food is so often involved when socialising, drinks as well sometimes (beer or soft drinks from a dispenser in pubs etc). People are often very ill for many years before diagnosis
After diagnosis the whole family is affected as avoiding cross contamination is very difficult. The tiniest speck of gluten can make someone extremely ill for a week. It's also very costly. GF food is 3/4 times the price of muggle food.
It was really upsetting in lockdown as muggles bought all the GF pasta, bread etc (as all the muggle stuff had gone) and then to add insult to injury were then throwing it away as they didn't like it.
Always be kind to those with Coeliac disease. They aren't being fussy. A tiny speck really will make them extremely ill. They can't eat out at many restaurants as there is nothing safe for them. It's generally unsafe fir them to eat at other people's homes as people don't understand the need for EVERYTHING to be gluten free, from stock cubes to wooden spoons or chopping boards.

I had no symptoms. I was diagnosed via a miscarriage clinic as I kept having those and they discovered I had Coeliac disease which was most likely causing it. I'm not sure I'd have ever known otherwise.

And regards McDonalds; I don't think I'd ever take the risk unless abroad where a lot of countries do GF properly. I'd never trust it in this country, although I know people do.

Mine started with feeling a little off after bread, pasta etc. It then developed into sleepless nights tossing and turning in agony after a few slices of pizza. Blood test also picked up that I had a few different anaemias.