Celiac disease

[Ramina]

Hi I’m after some positive reassurance. My 19yo son has been struggling with stomach ache/dirorea for some months now. Bloods/stools showed up celiac disease. They want to put a camera down just to confirm. We only found out yesterday. I’m feeling really anxious and I don’t really know how this will change his life. Can anyone who has celiac disease give me advice/reassurance to please?

My son was the same age when diagnosed. A lot of things that had puzzled us suddenly made sense—mood swings, lack of focus, headaches.

He adapted incredibly well even though he was away at his first year in university. Although it is sometimes a nuisance it is good that no drugs are needed. Lots of gf pasta and beer now available.

It’s not the worst thing by far. He’ll be fine and probably feel much better very quickly.

My dad has been diagnosed a coeliac since 1985. It has not limited his life in any way. It's also a million times easier these days than when he was first diagnosed.

I've been diagnosed for 23 years now, and though it can be a pain eating out, especially at things like weddings where you don't have a choice, it honestly doesn't impact my life day to day.
It is a learning curve though, especially in terms of gettting used to GF bread. People will tell you that a particular bread is lovely, but the very best gf bread is only ever what you would think of as just about acceptable in normal bread.
But the good news is that you can get GF pizza at Pizza Hut, Pizza Express, Dominos. Nandos (in fact just about all chain restaurants) have a GF listing/menu on their website, and all prepackaged food has to declare gluten on the label. There are lots of GF groups on FB so you can find out about GF fish and chips for instance, and ones where people will list all the new Christmas GF stuff in the shops.
Everyone in the extended family have to take it seriously - no 'oh, it only has a tiny bit of flour in it' or 'surely stock cubes are OK so I didn't check'.
Online supermarket shopping is much easier at this stage as all the ingredients are listed out so you can take your time to check. You will find that you have to shop at a variety of places as they all do some things better GF. Asda price match all their GF basics to the normal stuff so are really good value

I was diagnosed 2 years ago (I'm now 35)- it's annoying at first as it's just a bit of a pain, but most supermarkets have a great range of foods now. Eating out can be irritating, but it really depends where in the country you live. I'm in Bristol, independent restaurants tend to be better than chains IMO.
You said your son is 19, so I doubt he cooks much but as a general rule replace normal flour with doves brand. Best one I've found!
It took a bit of getting used to but he'll be okay.

I've never found a good croissant or doughnut (first world problem!), probably the only things I haven't been able to replace!

I was diagnosed in 2017.
Best thing I was told was to join Coeliacs UK and download their app. It makes food shopping a lot easier and cheaper as many store brands are GF and cost less than the free from section. Just scan the UPC codes on packets.
One membership can download the app to more than one phone.

Oh my goodness @oneglassandpuzzled You are actually describing my son. He always struggles to get motivated and said he feels tired all the time. I never realised these are symptoms too. Thank you so much for your response. I’m feeling better about it all today. Did your son have a gastroscopy to confirm or just a blood/stool test?

Thank you so much all of you that took the time to respond. I was really anxious yesterday and your positive advice really helped. Like with anything you don’t know about it all seems quite scary and overwhelming at the beginning. Thank you

@Ramina

Oh my goodness *@oneglassandpuzzled* You are actually describing my son. He always struggles to get motivated and said he feels tired all the time. I never realised these are symptoms too. Thank you so much for your response. I’m feeling better about it all today. Did your son have a gastroscopy to confirm or just a blood/stool test?

He had the endoscopy, too.

I wish I'd clicked he was ill before he took his A levels. He was ambitious and predicted to do well, but the night before one of his papers, his sister found him just lying on his bed, gazing at the ceiling. He'd seen doctors about various things, including tonsillitis during AS levels, but nobody had ever said, you look very slender, let's just do some blood tests. It was a very sensible Yorkshire nurse at university, when he went to sign on with a GP, who looked at him and suggested it.

The other thing about my son was that he was very touchy, very emotionally volatile and found being teased hard as a child. It made school years very hard for him. And, of course, if you're really skinny, you can have a hard time from other boys.

My daughter is 22 and has had coeliacs for 12 yrs now , it’s so much easier nowadays than it used to be even to eat out . You do need to be careful of cross contamination , our daughter has her own butter dish , toaster etc but aside from bread , cakes , biscuits we are a gf house as gf pasta is perfectly acceptable and I make any sauces gf etc . We order gf cakes from Sponge as they are fabulous . What I would say is that coeliacs is an autoimmune disease not an allergy or intolerance so in future that would be a better board to post on . I’m sure once your son starts being completely gf he will improve very quickly .

Oh @oneglassandpuzzled bless you, we can only do our best. You wasn’t to know. He’s happy and thriving now so that’s all that matters. I’m not going to lie I’m worried about the gastroscopy, I’ve heard it’s very uncomfortable 😞 had a letter today to say he’s been referred and they will be in touch.

@Floralnomad Thank you for your advise, I’m definitely checking sponge out. 😉 I never thought about toasters/utensils. Lots to think about. I apologise for adding to this thread as I said I’m learning every day!

@Ramina

Oh *@oneglassandpuzzled* bless you, we can only do our best. You wasn’t to know. He’s happy and thriving now so that’s all that matters. I’m not going to lie I’m worried about the gastroscopy, I’ve heard it’s very uncomfortable 😞 had a letter today to say he’s been referred and they will be in touch.

They will do all they can to make it tolerable. My son didn’t find it too bad 💐

If you have other children no harm to have them checked out as it runs in families.
Watch out for things like gluten free gravy as that can cause issues that he may not realise at first.
Ye will all soon adapt. I come from a family of a few coeliacs ( not me) and after the initial diagnosis they soon got into the swing of it.
He will have far more energy and won't know himself.

Thank you so much @junebirthdaygirl yes, I have 3 other children. I didn’t know it could run in families. This is the thing that I’m so hoping will happen. He’s been struggling for a while now. It would be amazing to see him thrive!

@Ramina if he’s having further tests to confirm diagnosis he needs to keep eating gluten until they happen unfortunately otherwise he may well get a false result .

Hi @Floralnomad yes the GP told him to carry on as normal until he has had his gastroscopy. Just waiting for appointment now.

I hope he gets his appt quickly. When Dd was waiting for hers it was a six month waiting list….this was a few years ago. Because she was vomiting every day she got really ill. I remember ringing round all the hospital in a 100 mile radius trying to find somewhere with a shorter waiting list to transfer to but it was the same everywhere. So we came to the conclusion we wouldn’t bother with an official diagnosis but then a few days later she collapsed and was rushed to hospital. Her bloods were so deranged they said she was chronically malnourished. She was admitted and on a drip for over a week, got her endoscopy while she was an inpatient!

She’s managed ok. I’m sure she misses nicer food but she says you get used to shit bread and the hassle when eating out….but that she feels so much better that it’s worth it.

It’s actually an auto immune illness not an allergy. Yes, he will have a gene for it and if he’s positive it’s worth getting a blood test for the other kids, and you and his dad. It’s possible to be a silent coeliac with no symptoms but still getting the internal damage.

If positive and he goes gluten free you all need to get clued up about cross contamination…so different butter, jam, toaster, etc.

Oh I was that parent 6 years ago! And how silly I feel now to have wasted so much time worrying about it! Honestly there are so so many things you can eat. The only real noticeable substitute is bread - it might take you a while to find the one he likes but he will.

Pm me if you need to at all. We would be really happy to help because we have learnt so much.

But I will say that supermarket gf foods have improved so much in the last 6 years and nearly every restaurant is fine.

We had the camera too / it was actually ok. The worrying about that was the worst bit too.

Honestly it's fine.

Definitely just ask any questions here or by PM, yes!

@CovidCorvid ohh my goodness, that sounds horrific. 6 months is terrible. Im really hoping this is not the case now. Poor girl. You know, his Dad and one of his brothers has always had stomach problems and doctors have put them on lanszaprosol it’s making me wonder now of they have the same. I hope your girl is ok now and thriving.

Oh @homealoneagain1 you don’t know how much this meant to me this morning when I read it. Thank you so much! I’m an over thinker, get very anxious about anything health related. So to see you come through it and telling me it’s all ok, is just what I needed. Yes, the gastroscopy is really worrying me now. Just the procedure and even the official outcome. Google is definitely not helpful at all 😩 thank you so much.

@oneglassandpuzzled thank you so much. That’s so kind and appreciated.

Both DDs are coeliac. I've not been tested but guess I should be.

Their diagnosis was a game changer. DD2 had never been well since puberty - all sorts of indistinct illnesses which, I'm ashamed to admit, I didn't take that seriously. She had no energy, bad skin, gynae issues.... Since changing her diet she now plays sport at a reasonably high level, looks fab, works hard, has a great job and don't think she's ever had any time off sick.
DD1 didn't have many symptoms but also seems to have renewed energy on her GF diet.

They no longer live at home but we're also largely a gluten free house. It's easier than trying to keep things separate.

I am coeliac. It takes a while to learn what it safe to eat and to find what you like, but it’s not too bad.

I recommend the whole family goes as gf as possible, like switching pasta and gravy for ease.

Separate toasters, butter, jams etc is a must.

[quote Ramina]@CovidCorvid ohh my goodness, that sounds horrific. 6 months is terrible. Im really hoping this is not the case now. Poor girl. You know, his Dad and one of his brothers has always had stomach problems and doctors have put them on lanszaprosol it’s making me wonder now of they have the same. I hope your girl is ok now and thriving.[/quote]
She initially improved and then went downhill again. Took loads of pushing for referrals from me to get more tests done….fobbed off at every step. Eventually diagnosed with EDS, POTs and fibromyalgia as well. Sadly not unusual once you’ve got one auto immune illness to end up with others as well.