Coeliac and Crohn's: what were your child's symptoms?

[OneSmallPieceOfCheese]

Hello all
My daughter is 10 and is awaiting a endoscopy to find out if she has coeliac or Crohn's (or neither... or something else). I like to be as prepared as possible so I'm trying to research both. So my question is, if your child has either condition, what symptoms do they have? Especially the less documented ones. Her main symptom is constant pain behind her belly button.
Thanks in advance... I'm hoping to get my head around the possible outcome so I'm not blindsided by it, whatever it is.

Hi Op. Both my DC have coeliac. DD was diagnosed age 6 following 13 months of bad headaches, random bouts of vomiting, diarrhoea, terrible episodes of heartburn, swollen stomach and being of small stature. My GP told me DD “just had a tummy ache” - after pleading / begging, she agreed to do a blood test which showed very raised TTGA levels. Due to her being diagnosed (I didn’t realise at the time, but the ENTIRE side of my dad’s family are coeliac!), we were all tested; myself, DH and DS (then aged 8). DH and I were fine; DS had a TTGA level of 47 (I think) and had an OGD at Bristol children’s hospital, which confirmed Marsh 3a changes in his stomach. The only symptom he had was diarrhoea after eating weetabix.

With the OGD, it wasn’t pleasant (DS had it under GA) and it did knock him for six. He was sick afterwards but was OK the next day. All the best with your Dd

Hi - have they done a stool test on her yet? X

Yes, one a few years ago that was normal for calprotectin, but repeated this week and awaiting results.

Hi @Poppsidoppsi thanks, that's kind of you. That's interesting that your children had different symptoms to each other. Presumably going GF has made a big difference. And very interesting about the family link!

Following this as mine is small with regular stomach aches. Bloods came back fine but something seems off.

I wouid wait to see what her stool test comes comes back with as that will show inflammation (or not) to rule out IBD.

Thanks. Yes we shall have to wait and see. She's been in constrant pain for years now, and I just want to be able to help her.

@Morechocmorechoc I guess it's instinct how we just know that something isn't right with our children. What kind of tummy aches does your child have, are they constant or does the pain come and go?

DD has coeliac disease, diagnosed in her early teens. She had no gastro symptoms or abdominal pain at all. Instead, she was absolutely exhausted - she could only lie down for most of the time. (However, now - since cutting out gluten, she will have pain and gastro issues if she eats even a tiny amount of wheat, etc.)

Dd had random vomiting episodes for years. Very frequently, like a few times a week. Constant low grade tummy pain and intermittent but severe chest pain. She has coeliac disease. Her calprotectin levels were raised as was her blood test

Oh fatigued and anaemia as well

Thanks for the replies everyone. My daughter's initial blood test indicated coeliac due to raised TTG but the levels then slowly dropped after that to pretty much normal. She reacts very strongly to even barley malt though.

My daughter was diagnosed at 18 months. She had severe constipation plus lots of vomiting episodes, swollen tummy and she’d stopped growing. She’s a happy and healthy 11yo now, symptoms abated almost as soon as she went on her strict GF diet. Good luck x

Urgh typed out huge message and lost it all. Following as my 10 year old son has daily churning stomach and we cannot get to the bottom of it (excuse the pun). Upset stomachs, flatulence, trapped gas, pain that eases on lying prone…
Tried dairy free and soya free which reduced the gas a bit… neither type of buscopan helps. IBS diagnosed by GP following negative stool and blood test.

D's started with fainting one morning. Shortness of breath, really low iron levels and constant nausea plus frequent visits to the loo. Raised calprotectin levels. Eventually diagnosed IBD via a pill camera. Doctors veered between ulcerative colitis and crohns diagnosis for ages before settling for mild crohns. She has recently had blood transfusions and started immunotherapy but hasn't missed a day of education or work in years.

My 11yo DS was diagnosed with Crohn's Disease earlier this year (he was 10 at the time). He had the usual symptoms you might expect - diarrhoea, cramping, bleeding and fatigue. But also he developed eczema around his eyes and on his neck. He was very pale with dark circles around his eyes and he had pain in his feet. He lost weight and didn't grow at all. His first calprotectin came back at around 200 which raised concerns. It was repeated three weeks later and came back at 1200, which led to endoscopy and colonoscopy.

My Dd was diagnosed with Crohn’s at age 13.
symptoms were rapid weight loss, pain after eating, constipation, tiredness. Stool samples were normal but inflammatory markers were very high. Her disease is atypical in that she doesn’t have diarrhoea but her small intestine was found to be ulcerated after colonoscopy. She has flares which she links to stress and manages it well with Adulimunab injections weekly. I hope your daughter receives answers.

DS 12 has IBS after a long investigation on whether he had crohns or not, I’ve found methods that help him when he has a bad tummy or trapped wind but the problem is it’s never the same problem meaning it’s never the same solution. Sometimes he has pain on his right side for weeks and then it switches to the left. With Corhns I’d assume you’d need to make sure they're getting enough nutrients as they’ll be more likely to lose some

Thanks for the replies everyone. The more I think about it, the more I wonder whether she has Crohn's that triggered by gluten. But really I'm just going round in circles. Wish we had answers already.

Hello! I have coeliacs, prob had it since I was about 7 but not diagnosed until a few months ago.

I've always felt a bit sick after I've eaten and struggled with anemia all my life. Recently though, I was losing so much hair, constant headaches, always had a tummy ache and had a lot of gas which always smelt putrid.

TTG was very high but I still had to have an endoscopy.
Going to have my children tested too although we are all pretty much gluten free now, it's a fairly easy swap to make.

Coeliac is very hard to diagnose so unfortunately you're best to wait for the endoscopy. DS has coeliac but no symptoms at all, his TTG levels were through the roof but only picked up as he had screening for several other autoimmune diseases when he was diagnosed with something else - this picked up the insane TTG levels but we had to wait a year for an endoscopy to confirm coeliac (he wasn't flagged as urgent due to no symptoms, the wait it less if it's urgent I believe). Good luck, and hope your wait isn't too long x

Sorry - meant to say: very hard to diagnose in children.

@manipulatrice That's interesting that you're all GF now, do your children find it tricky at school, on trips, at friends' houses etc? It's the hidden gluten in sweets that's most frustrating (wheat in strawberry laces for example!). I wish we found it easy.

I probably didn't make that very clear, my apologies. Our house is gluten free, so swaps for pasta and breads and flour etc. There are still snacks they've always eaten readily available but in meals etc are all gluten free and we all eat the same. They know no different tbh 🤣

Everyone has turned their nose up at tortilla wraps that are gluten free, can't find nice ones, but we've been able to find products to substitute for other things that everyone has.

Out and about they will have whatever they want and I will stare lovingly at their food 😭

I suspect my youngest also has it, just don't particularly want to subject him to a blood test. Considering cutting it out and keeping a diary but I don't want to upset his stomach.

Don't get me started about the hidden wheat. Apparently lindor chocs are because of the under 20mg content or something, so I had one, yeh no. Proper upset about that one, and colmans mustard, that annoyed me too!