Anyone got a child with coeliac disease?

[CatchingBabies]

My DD is due to be tested for this and I was wondering if anyone could tell me what the early symptoms were.

DD is 6, she had loose stools around 4 months ago which we put down to a virus and kept her off school. Since then she has had loose stools around 15 times and missed a lot of school as each time we’ve had to assume it’s infectious. The frequency of these bouts is becoming closer together and the consistency of her stools are becoming looser so whatever is going on is worsening. She’s never had vomiting alongside but she does complain of a sore belly.

We took her to the GP a few weeks ago as this was reoccurring, she had a stool sample tested which found nothing untoward. We’ve been keeping a food diary and there is no obvious triggers for these episodes. Inbeween the episodes her bowels are normal.

We’ve seen the GP today and he suggests testing for coeliac disease. Googling the symptoms it lists weight loss, failure to grow etc. as symptoms but she’s tall for her age and a good weight. It’s also not constant and she eats gluten more days than not so if this was the case wouldn’t she have loose stools every day?

I don’t want to put her through invasive tests and bloods etc. which will terrify her if there is another simple explanation and I wonder if testing her for coeliac disease is a little extreme.

Those of you who have children with this can you tell me what the early symptoms were? We’re they mild / severe etc. Over what period of time?

@CatchingBabies The symptoms of coeliac disease can vary enormously.

DS was diagnosed at the age of 18, after about 4 years of very intermittent vomiting/tummy aches which the first GP he saw diagnosed as indigestion! It took another 18 months before we got a referral to a specialist.

Even the gastroenterologist who he saw (who has 2 coeliac children himself) was mystified by DS's symptoms and was not planning to test for coeliac disease, it was discovered from other exploratory tests.

DS is small & very slim for his age & I wish we had got the diagnosis a couple of years earlier when he was still growing. He started feeling better as soon as he went on a gluten free diet.

1 in 100 of the population has coeliac disease - it would be worth getting your DD tested for it, even if it's just to rule it out. Also, and hopefully they will explain this to you, she may test negative for coeliac but still have gluten intolerance.

DS ate lots of gluten all the time, but his symptoms were not constant, they flared up very few months, so I would not set too much store by that.

Good luck!

I think you can have the gene for CD but have no symptoms until there's a trigger.

DS2 was fine as a baby. Are loads of gluten with no ill effects and was large baby growing well.

At 11 months he had a bout of gastroenteritis which he recovered from, but then started throwing up after evening meals. This was dismissed as "some babies are like this". He had failure to thrive which wasn't picked up as by this time he was on 50th percentile on aged 1+page of red book which doctors saw as normal and didn't pick up that he'd been 95th percentile before that.

He lost all energy. His skin became almost translucent and he developed a bloated tummy (like the charity ads for starving children)

He was finally diagnosed at 22 months when in hospital for a high temp and they stripped him down and saw what he looked like. (I had tried to get doctors to look at him for coeliac before this but been ignored)

My mum was diagnosed with coeliac in her 70s. Her only symptoms were a lifetime of anaemia. Having CD in the family also raised the likelihood of DS2 to 1 in 10. After his diagnosis ds1 and I were also tested but found not to have it.

I would say definitely get the blood tests done now (making sure lots of gluten is in your dd's diet beforehand)

DS2 is now a 6' teen totally used to eating GF (which is a lot easier these days)

My dd has coeliac disease.

I don't think she her disease was triggered until she was about 13yo. So it's possible to be a normal weight/height and then for that to tail off once it's triggered. You don't have it from birth.

Symptoms are different for everyone. Dds main symptom was vomiting and stomach pains. But not all the time. And quite low grade I guess. But over the next few years it got worse and worse.

Not everyone has bowel issues or stomach issues. Some people have odd skin issue. In fact it's possible to be a silent coeliac with no symptoms.

It's worth having the blood test. If that comes back negative they won't do anything more invasive.

My children dont have coeliac disease but me and my dad do (diagnosed as adults) and our symptoms were different to each other. He had similar to your DD, I was vomiting every so often but not really to a pattern and I lost weight and was exhausted.

My DD has been tested for it as she was getting a sore tummy when eating pasta, bread, etc but hers came back negative. I would get your DD tested, just to rule it out if nothing else, they were early good doing blood tests, they have specialist play nurses who distract the child, and they don't see the needle at all, and they use numbing cream so it's not too painful.

Hope your DD is feeling better soon.

Coeliac disease causes very different symptoms. I was diagnosed at 60 after having had very variable bowel function since at least my early teenage years, which was attributed to IBS. I believe that I was coeliac from an early age because I have coeliac tooth defects. But in my tall thin birth family I was the tallest and joint skinniest.

My two granddaughters have coeliac disease. They presented as mainly failure to thrive..... regular vomiting, classic starved child look of huge belly and frail arms/legs, and horrid horrid pallor along with no energy and constant sleeping. It was deeply upsetting to see them, but luckily our GP was very clued up and suggested coeliac at the first visit with both. Their markers were so high that neither needed a gut biopsy for diagnosis. With both, they started showing signs at around 18 months.

The test is only blood initially - I would rather have an answer.

Hi all,
Just dropping by to let you know that following some feedback from MNers, we've moved this thread from the Allergies and intolerances section to its new home, here in the Autoimmune disease area
Thanks,
M.