To put my DS on a gluten free diet?

[SoCockneyItHurts]

I'm desperate! He's 7 and has been having diarrhoea daily for the last 4-5 months. And it's explosive, very smelly and causing him to get sores around his anus.

We went to the paediatrician at the hospital on 1st September. After lots of questions and prodding of his tummy she concluded that he had a short gut transit time whatever that is. That basically his food passes through him at a much faster rate than others. She wanted a blood test to check absorbtion of vitamins etc. We found out on weds that's he's anaemic and the hospital have started him on Sytron iron liquid for 3 months. The diarrhoea is continuing and I'm so stressed with it. He went 5 times yesterday. A gluten free diet is the only thing I haven't tried. The paediatrician did ask about diet but didn't think it was that.

I'm hesitant to try it because it says you shouldn't without a proper diagnosis. Plus it's quite restricted from what I've read and DS is fussy enough as it is! But I really am desperate.... the fact that he's now anaemic has stressed me further and I can't stop worrying. AIBU to try gluten free without diagnosis?

Thank you....I'm so worried about him :(

I would keep eating gluten until a test as others have said. Dairy is worth a try - bear in mind many children allergic to dairy are also allergic to soy. It doesn't seem good enough for the doctors to leave him until Dec!

Can food intolerances start out of the blue? He was fine before

I wouldn't be cutting out anything without medical guidance and supervision from a qualified specialist or doctor.

I can't believe people are advising the OP to cut food groups out.

The current advice from the BMA is not to cut gluten out unless you have been diagnosed with coeliacs. If the Dr wants to go down that route then they will start tests and he should cut things out only under supervision of a medical professional.

Yes, they can start at any time. They can often be trigggered by illness or certain changes to the body. I think pregnancy triggered my issues with gluten

Ok, since he's been diagnosed as anaemic that implies he's had some blood tests done. Have you got results of these in writing? The tests for coeliac might be listed as anti-tTG (tissue transglutaminase antibodies) and possibly endomysial antibodies (forget the abbreviation). I would suggest you wait and see his GP asap to discuss whether he's been tested yet for coeliac, and the pros and cons of trying a change in diet at this point. They might be able to get a blood test added on or arranged.

A trial of a gluten free diet won't give you an instant fix though it could help after a few days to a couple of weeks. If you do it you need to have a definite plan of "what next"? The 3 months followup will be to see if the iron is working for the anaemia (it needs time to work), to see if his symptoms are improving or not, and to consider what next if he is still unwell. One "what next" could be endoscopy which would look for things like Crohn's and coeliac. So if you had him on a gluten-free diet at that point, they would have to ask you to put him back on gluten for I think 6 weeks before doing an endoscopy to be sure of getting a valid result.

So if you decide you need to try him gluten free, make sure your GP knows, and discuss results of trying it after maybe 2 or 3 weeks. If his symptoms improve a lot, ask the GP to let his paediatrician know, and put him back on gluten. If he were to then get symptoms again, yes you would have your answer but they would probably want to do the tests to be sure and for other reasons. But perhaps it could be expedited or at least the timing planned.

The fact that his symptoms are causing a lot of problems is reason enough to keep in touch with your GP. Hope things start to improve.

I have coeliac disease. I know it's unpleasant but I seriously don't recommend a gf dirt unless he's been medically diagnosed. To do this accurately he needs to have gluten in his system. If you remove it and he gets tested it'll come back negative (if he's coeliac!). Try and make a food diary, and persist with the Dr. Mine was adamant I wasn't coeliac, I think I saw nearly every gp in my surgery before being tested and they finally diagnosed me. Good luck op.

*diet. Ffs. Also rice crispies more often than not have barley in them. Most cereals have some kind of gluten-nasty, so double check. It's in more than you realise (stamps, make up, own brand soft drinks)

My Dd who is now 14 was diagnosed with coeliac disease two years ago, she was painfully thin always tired started to get migraines and her joints ached also she had bad loose bowl movements but not to the extreme that your son does that I noticed.

I would ring the paediatrician's secretary and tell her how worried you are and could your son be tested for coeliac disease, as previous op said some cereals have wheat, barley and rye in them, we usually get Tesco own brand Rice Krispies as they don't have wheat in them in fact a lot of their own brand cereals don't have wheat in them the key would be to check the ingredients on the side of the packaging, barley malt extract is fine but not just barley.

He may be he is super sensitive to wheat that's why he's getting such bad bowel movements but definitely ring up and push the issue further.

My Dd was also on iron for 3 months and her vitamin d level was very low as well, but once she was diagnosed and followed a gf diet she looks so healthy and had a growth surge which was great. A lot of the supermarkets do a great range in gf food as does M&S though still more expensive than usual range, and if he is diagnosed with coeliac disease you may be able to get a prescription for some foods as we do, but I know not all areas of the country still do this.

DM is gluten and lactose intolerant. (So not coeliac)
Gluten causes her bloating and swelling, lactose gives her severe diarrhoea. From your description I immediately thought of a lactose intolerance. If could be a number of other things though.
Are you using a nappy cream to stop him getting sore? Weleda do a natural one which is very good, but even Sudocream would help.
Lactose and gluten-free aren't really that restrictive once you get your head around it. You just have to eat different rather than trying to substitute foods directly.
I hope you get some answers soon. It's a horrible position to be in.

Your Rice Krispies will not be gluten free they will contain barley malt syrup most likely. You can get gluten free Rice Krispies at a resibabke price and you could try almond milk or lactose free milk which is pretty easy to get as well. You could try him on a low fodmap gluten free diet for a week or so and see if it makes a difference. It's normally a blood test initially for coeliac but sometimes it's not picked up on bloods and needs a biopsy this was how mine was discovered, I had a colonoscopy and endoscopy not pleasant but a necessity.

If you're not 100% confident about a gluten-free diet, check the ingredients. A lot of rice crispies (and other rice bubble things) still contain gluten. Secondly, if he has coeliac disease, you could be doing him a disservice by going gluten-free, as he would need to be eating gluten consistently for the tests to be accurate.

Thank you all so much. Very good advice and I've taken it all on board. I'll keep his diet as normal until I've had anything confirmed. Definitely going to go back to the GP with my concerns. If it is the iron medication causing this latest bout of severe diarrhoea I'm not sure what I'll do as he needs it. It's just the most baffling thing. Thank you all again

So he's literally just finished lunch of homemade carrot and red lentil soup, like finished it a minute ago and is already on the toilet!!!

I'm surprised nobody has picked up your comment that he doesn't go at school - I'm not sure how this would work with any physical cause like coeliac or Crohn's. If he can go hours in the day when he's out but goes all the time at home I'd want to find out why.

Don't put him on a gluten free diet just yet, because they need him to be eating gluten when they test him and if you take him off gluten they will just request you put him back on it to test him.

Go back to your GP/paediatrician and directly request testing for coeliac.

To be honest speaking as a nurse and severe coeliac I would be looking at his gut health first

It could be that he has an imbalance of bacteria which is exacerbating things, optibac I believe do a paediatric formula which my nutritionist recommends

When mine was unbalanced I was dairy intolerant but after treatment I am now able to cope with average but not excessive amounts of dairy

This all happened because my coeliac disease was undetected due to an immunodeficiency that 1:9 coeliacs have, by the the time I was discovered I was in a wheelchair

As advised please don't remove the gluten if you hope to get an accurate diagnosis, the current advice I believe is 4-6 portions a day for 6 weeks prior to testing

Strange question but how's his head? I had morning diarrhoea together with a very wooly head for years. Never linked the two, mind, until I cut out carbs. Both went away. The day I had a sugar syrup in my coffee both symptoms came back within the hour.

My doctor isn't convinced. If you google 'sugar hangover' it does seem to be a thing though. This is hearsay, mind, so maybe don't go so extreme with him, but maybe try cutting out obvious sugars and see if there's an improvement. I'm talking things like sweets, chocolates and soft drinks - I can't see any doctor complaining about that. I do have reactions with some fruit so you could maybe monitor him.

I'm surprised nobody has picked up your comment that he doesn't go at school
Was going to say the same. How can this be reconciled with needing to go one minute after lunch with you?

I've got CMPA and can't see how he would manage not going at school either.

That's a very good question regarding school. maybe it is a side effect of the iron meds or he could have picked up a stomach bug from school? Usually he'll go once or twice of an evening but since I've started the medication he's going all the time. That still doesn't explain why he's being having diarrhoea every day for the past few months though. I think the whole anaemia thing has thrown me into a panic and I'm thinking there is something seriously wrong with him.

To me this sounds like a lactose thing, if it's diarrhea with a lot of gut pain. Lactose hides in do much stuff!

He never has any sort of abdominal pain....just diarrhoea

If you are worried by the anaemia, hace yiu boughtcsone iron cooking pots? This may help.

No but I'll look into getting some.....thank you

Have they ruled any IBD like crohns or Colitis? Do you have any ibd in the family?
Does he drink a lot of diet / no added sugar drinks?
I have crohns & fodmap helped me a lot for sensitivities & general bowel irritability on top of crohns, but all the possible underlying causes should be ruled out first, before trying an IBS diet like fodmap.