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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To put my DS on a gluten free diet?

79 replies

SoCockneyItHurts · 17/09/2017 09:26

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 :(

OP posts:

dementedpixie · 17/09/2017 09:29

Have they not treated him for coeliac disease? I'd ask them to test before cutting gluten out as you would not get an accurate result if you aren't eating gluten

EveryoneTalkAboutPopMusic · 17/09/2017 09:30

That sounds awful, your poor DS. When's his next appointment?

vegetariansAreDelicious · 17/09/2017 09:32

Do you have anything to lose by trying it?

If they're getting all vitamins, minerals, calories etc then having a go and giving it time to see the effects sounds like a good idea.

Try to keep the gluten free part the only thing that changes in order to eliminate other changes.

I have next to no medical training.

Idontevencareanymore · 17/09/2017 09:32

It couldn't hurt to eliminate the cause I guess?

I've got under active thyroid and it's been suggested a GF dietc would benefit me but alas I love real bread too much!

Be warned though it's expensive!

dementedpixie · 17/09/2017 09:33

I really wouldn't cut it out before testing.

Changerofname987654321 · 17/09/2017 09:33

Definitely push for testing for coeliacs disease. Could you do this privately?

Have they tested his poo for parasites?

Have you considered cutting out dairy? Definitely do separate to wheat and take care of calcium and vitamin d.

sjd84 · 17/09/2017 09:37

If you go gluten free, you would have to reintroduce it again when they test for coeliac disease, I would push for the test as if your son gets the diagnosis he will be entitled to GF foods on prescription and would likely get referral to Dietitian. If it is short transit time, diarrhoea is much more common and they may need to look at medications or changes to diet to help with the diarrbkeadiarrhoea

JessicaEccles · 17/09/2017 09:37

Have you thought of trying the FODMAP diet? It's about eliminating certain foods and then reintroducing slowly. I have fast transit and it's high fibre foods that cause me the most trouble.

bridgetreilly · 17/09/2017 09:39

I wouldn't. I don't think those are normal symptoms for coeliacs. What I would be asking the doctor about is Crohns.

MargoChanning · 17/09/2017 09:47

Speak to his GP or paediatrician asap and ask for a blood test for coeliac disease. If the results come back positive, push for a gut biopsy (they would probably do that anyway with positive results). Anemia and diarrhea are symptoms of coeliac disease. Check out www.coeliac.org.uk/coeliac-disease/is-it-coeliac-disease/

I'm very surprised that they haven't already tried to test for this. He will need to continue to eat gluten before the test, so don't go gluten free just yet or it may give a false result. Coeliac UK will tell you more about this.

If he is coeliac, there are many more gluten free foods on the market now, including pasta, ready meals, biscuits, cakes, bread etc. My mum, after decades of stomach problems and being told it was IBS or a result of her medication for other issues, was finally diagnosed as having coeliac disease at the age of 70 after I persuaded her to ask for a blood test (later confirmed with a gut biopsy).

It may be that he doesn't have coeliac disease, but I do think it should be ruled out at least. My 6 year old daughter was also tested as she had a bloated tummy and diarrhea for a while (now fine) and coeliac disease can run in families (worth asking coeliac UK about this too). Her results were negative.

Please note I have no medical training at all and my advice above is based on personal experience.

Original poster

SoCockneyItHurts · 17/09/2017 09:47

Thank you....he hasn't had gluten this morning just rice crispies with milk and has just had another bad bout of diarrhoea. There's no blood (that I know of) or mucous in it but lots of undigested food. He's very slim so can't afford to be pooing all the time. We're due to go back 22nd December but I'm not happy with the diagnosis of fast gut transit. And the fact that he's anaemic. As bad as it sounds I was hoping the iron meds would constipate him just to stop the diarrhoea but it hasn't. Poo was tested in lab but all clear.

OP posts:

dementedpixie · 17/09/2017 09:50

Some rice crispies have gluten in unless they are marked as gluten free

Surfingwhippet · 17/09/2017 09:52

It sounds more like the milk causing it. You have nothing to lose cutting out milk to see what happens

Lonecatwithkitten · 17/09/2017 09:55

All regular rice crispier have gluten in them ( there is malt extract in them). I would be pushing hard for coeliac testing foul smelling profuse loose faeces is one of the classic signs of coeliac disease.

Fourmagpies · 17/09/2017 09:55

It'll take a while to clear properly if he is coeliac, it's not immediate. Also as others have said, if you want him tested don't cut out gluten yet as he'll need to be eating gluten to get a true result. I have the opposite problem with DS1 but he's is caused by dairy. December is a long time to wait. Have they given you any medication to help stop the diarrhoea in the meantime?

Squeezed · 17/09/2017 09:56

Dd is currently dairy free, gluten free and low FODMAP. It's improved her bowel movements significantly. It's very restrictive but we'll start reintroducing foods soon. Once being tested for coeliacs it might be worth trying gluten free though.

Original poster

SoCockneyItHurts · 17/09/2017 09:58

I did cut out dairy and lactose for a while and it did make a difference but it came back after a while. I'm wondering if it's milk.... I mean it seriously is driving me bonkers! Everytime he says he needs a poo my heart sinks. Surprisingly he's never needed to go at school but as soo as he's home he goes. It has got worse since he started the Sytron so could be a side effect....arrgghh I just don't know but I'm so stressed with it all. He'll end up dehydrated at this rate :(

OP posts:

geekone · 17/09/2017 09:58

Friends husband had the same and it turned out to be lactose intolerance. You can't tell until you start removing foods little at a time. Good luck.

PoshPenny · 17/09/2017 09:59

I think for the coeliac test you don't have to be eating much gluten - 4 slices of bread a day is sufficient IIRC. Dairy can also cause digestive problems, you could fiddle around with that and see if it helps. Gluten free diets don't have to be restrictive or expensive. Base your meals round rice and potatoes rather than bread and pasta and cook from scratch so nothing is hidden in ready meals. A roast dinner is GF if you make the gravy with cornflour. Good luck and I hope you can get your son more comfortable.

FunkinEll · 17/09/2017 10:00

Please, please, please get him tested before starting a gluten free diet (a blood test). I gave up gluten for similar issues and if I want to have a coeliac test now I'd have to eat gluten again for 6 weeks to be tested. I wish I'd had the test first because coeliac disease is very serious and needs proper diagnosis.

Absolutely remove gluten from
His diet after the test of you think it'll help. I feel so much better for it but wish I'd been tested properly first.

BarryTheKestrel · 17/09/2017 10:00

Get him tested ASAP. They can't do a diagnosis of coeliac disease if he is no longer eating gluten because the body repairs the damage caused. For an adult diagnosis if you have stopped eating gluten you need to eat the equivalent of 2 slices of a bread a day for 6 weeks prior to testing to ensure a positive diagnosis as otherwise you can get a false negative.
Go to the GP for testing. In some areas a blood test is enough to diagnose a child without need for an endoscopy.

Original poster

SoCockneyItHurts · 17/09/2017 10:00

I'll definitely look at FODMAP. No meds given to stop it. Is it a special test then for coeliac? And I wonder why they didn't test for that at hospital? I'm off to check the rice crispies

OP posts:

Manupprincess · 17/09/2017 10:00

As others have said he will need to continue to eat gluten to get tested. If the tests show he has coeliac then going gluten free is not that difficult in the scheme of things but it's not instant. It can take weeks of a gf diet to see a difference.
With food elimination it is better to take a systematic approach and ideally with the support of a dietician.

dementedpixie · 17/09/2017 10:02

Think it's malt extract in the rice crispies. You have to buy specific ones to get gluten free

Manupprincess · 17/09/2017 10:06

Test for coeliac is initially a blood test and if that is positive they can do a biopsy to confirm whilst also looking at the condition of the gut. We were advised not to have a biopsy for our DS as 2 years but not sure about an older child.

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