5 year old celiac

[germoore]

Hi everyone.
My son is 5 and the last 8 months or so he's been complaining of pain in tummy every day could say it up to 4/5 times a day. He's an anxious kid so I put it down to that I'd reassure. He's very behavioural and he's highly strung. To cut a long story short he then in the last few months the first thing was a vomiting lasted for over a week by the end of it he was vomiting blood admitted on the peds unit they said it's just viral fine go home then this week he has had diarrhoea all week but there's lots of mucus and blood 🩸 Called the GP and seen her that day. She said it's not a bug or a virus and she believes he may be celiac and as he's getting older it's getting worst and could be all linked with behaviour tummy aches anxiety. Has requested lots of blood tests but you can't get an appointment for weeks.
I know I shouldn't start him on gluten free but I need him to stop pooping and feeling rubbish and I don't have an appointment for weeks so I bought him gluten free products and after a couple of days he's much better and has not once said I have a pain in my tummy.
He's is a very good eater and he eats very well and has a wide variety of vegetables and we rarely eat takeaways and I don't let him eat much junk and drinks lots of water but we were on holiday eating all sorts and I notice when we are away and let ourselves go a bit he gets sick a few days later
So sorry for the long post but if someone has time to read and reassure I'd be grateful

Hi I’m so sorry you’re both going through this, I’m coeliac but the blood tests the gp carried out were negative because I couldn’t tolerate enough gluten to be tested, I was referred to a gastroenterologist who carried out a genetic test which confirmed coeliac without needing to eat it! If I was you I wouldn’t wait for the appointment and ask for a referral asap - explain gluten is making him too ill so the test will be negative.
Then be mindful of hidden gluten, you need to check everything for BROWS - barley, rye, oats, wheat and spelt and make sure he’s not mistakenly eating it. Good luck op! Xx

The thing with having celiac disease is that the treatment is to go gluten free. So if you find that removing gluten helps your child you might as well carry on. He might have gluten intolerance rather than celiac and that might not show up on the tests.
He’s not going to be nutritionally deprived without wheat/oat/rye products and there’s plenty of alternatives these days. As you say, he’s a good eater and not a beige one, so much junk food is based on wheat and he’ll avoid it from the start!

Thank you both so much. Really appreciate it for taking time out to reply and your right get an appointment asap as I can't watch my kid vomit or poo blood and if the food is causing problem I'll do what I can to help him feel better in the meantime. I was even considering private as the NHS is mincemeat at the minute you only can call the peds out patients 2 times a week so annoying but I did ring the ward and demanded a blood test and they gave me one for the 21st of may. But I'm definitely going to get this sorted once and for all

Some celiac cases are diagnosed by different routes than the standard blood tests but it's not straightforward. If you feel you just need a break what you've done is ok, but in the runup to blood tests you need 15g per day going in for 6 weeks otherwise you're just storing up frustration for later.

It doesn't sound as if the GP thinks celiac is the only possibility, in some ways this increases the importance of a reliable test to rule it in or out.

Yes to diagnose it. It's not easy and she wants to rule it out and other allergies but she wants these bloods done to get a case together for a consultant to see as at the moment it's impossible to refer and to get a appointment due to the shortages. The days of children being a priority are over I'm afraid. It's constantly fighting the system I'm a nurse and went I noticed the blood and mucus in the poop. I thought ulcerative colitis Crohn's disease but we all know it's unlikely as it's uncommon or on heard of with young children. In fairness the GP has ordered every blood test known to man
Thank you for getting back to me appreciate it

Ps I haven't completely cut out gluten just some changes

Hi OP, my DD is coeliac and was diagnosed at 6yo. It’s really, really important that if you think he is coeliac that you get a blood test done. He should still maintain a gluten diet as this could affect the results. Coeliac is a totally different ball game to gluten intolerance; if your son is coeliac, he will need yearly blood tests and paediatrician reviews until he is 16. Coeliac disease can affect the child’s growth and cause all sorts of issues, so the earlier it is diagnosed the better. Push for the blood test, keep him on gluten (you will get a better and more reliable result) and then you will know where to go from there (whether or not he is coeliac or gluten intolerant). My son is also coeliac and was diagnosed via OGD; he was 8yo so had it done at Bristol Childrens under GA.

Honestly I would push for the genetic test as someone who couldn’t tolerate the gluten for the sake of a diagnosis. I have a great gastroenterologist on the nhs - I hope I’m not the minority but torturing for the sake of the test is barbaric! If you cut out all gluten and symptoms stop see if you can have a diagnoses of coeliac on that basis - like pp has said a diagnoses gives you an annual review, access to food on prescription if available in your area. I would fight this tooth and nail and not give gluten xx

If he goes gluten free and he has celiac then it won’t show on a blood test.

I totally agree with your frustration with NHS waiting lists. My teen son is being seen for gastro issues and it’s taken years to get the referral to see a hospital consultant.

Keeping a food diary is a good idea. I worked out that my son is lactose intolerant which is luckily not too difficult to deal with.