Three year old coeliac disease

[Carosarah]

Our three year old son has recently been diagnosed with suspected coeliac, we are waiting to see a gastroenterologist for further tests. I just wondered if anyone has any experience of little ones with coeliac please?

Our little boy had a virus when he was around 18 months and after that there was a total change in him. He became agitated, unable to concentrate, his speech stopped and has never come back then he started having stomach problems and appears to have headaches. He has very low iron levels which the paediatrician suspects is due to coeliac as he eats well, he seems exhausted all the time and is no where near as active as he used to be.

If anyone has any experience of how coeliac affects development and behaviour it would be great to hear about please. I also wondered how long it took for a gluten free diet to really make a difference?

thank you!

Hello, I’m not sure if this will help, but happy to share our experience. Our youngest was diagnosed at four. In retrospect, I wonder if she had always been coeliac and it took us a while to realise. She was always a sicky baby - would vomit at the slightest thing and if she was ever sick it was always her tummy (rather than colds). She had bad colic and was quite a shouty baby and an emotional toddler. We got her diagnosed at four, as her hair was really thin and she had a protruding tummy and was quite small. They diagnosed her with blood tests alone as her antibodies were so high. I asked them to test as my brother in law’s family are coeliac and so it was on my radar. She’s been gluten free since four and developmentally she’s fine, but she is still very small - we had her assessed and her bone development is 3 years behind and the paediatrician seems to think this might be because of undiagnosed coeliac and she should catch up 🤞🏻. Feel free to Pm me. Happy to answers any questions if I might help. Also, to share any recipes should you need them going forward - we’ve built up a bit of a repertoire four years in. Good luck! X

Sorry - to add, the gluten free diet made a difference to how she felt very quickly, although her height is taking longer to catch up.

First thing is don’t start a gf diet until after all necessary testing has been finished . Our daughter wasn’t diagnosed until 10 so I’ve no advice on small children but you may get more answers on the autoimmune disease board as that is what coeliac disease is as opposed to being an allergy / intolerance .

My twins who are just turned 3 have had investigations for coeliac (undiagnosed). Also diagnosed with CMPA at 6 months of age.

The symptoms they have a frequently loose stools, at its worse it was up to 13 a day. Now more like 5 a day. They complain of tummy pain. And sometimes 1 of them complains of headaches and bacpain.n. She also has a low grade temperature a lot of the time. And if unwell we struggle to bring her temp down- often near 40 degrees with illnesses.

In terms of behaviour as babies they were extremely upset (cried all the time literally). Had bad reflux as babies and would arch their backs and cry lots. Now 1 of the twins gets upset frequently the other doesnt- think it may just be personality! No impact on development. Apart from issues with toilet training. They have both been dry for a long time including at night. But have limited bowel control.

The assessments they have had include both having positive blood tests for coeliac. Also low iron found in blood test. And stool sample showed high levels of calprotectin. They both had an endoscopy in April which did not show any damage. We have been advised to continue with gluten for the time being and will review with further tests - bloods and depending on these another endoscopy. I have a review with gastrointestinal consultant tomorrow so will know more of the plan hopefully tomorrow.

If you cut out gluten prior to the tests you may get a false negative though to make you aware

The short answer is it depends! Some difference will be quickly noticeable, but it can take months or years for damage from coeliac disease to recover, depending on the severity. It is an autoimmune disease and there is no treatment as such other than a gluten free diet, which is mostly manageable.

There is plenty of advice at Coeliac UK https://www.coeliac.org.uk/home/