FODMAPS help..

[roobiedoobie]

Hiya,

My 9 yr old has been tested for coeliac disease because she has stomach issues, constipation, pain, wind, feeling sick.

Dr was confident of diagnosis because myself and my brother both have coeliac disease.

He has given me a FODMAPS sheet and asked me do it for my daughter.

I must admit I'm quite confused, it says she can have gluten free biscuits, bread and cereal, but they mostly contain milk, which it says she shouldn't have.. so what do I do? I also see she can have cheddar and block butter..

So confused!

Anyone have any advice?

Ta

Roo

[patientj]

Why has he suggested a low FODMAP diet if he thinks she's a coeliac? The low FODMAP diet isn't a gluten-free diet and the clinical guidelines recommend it should be done under the supervision of a dietician. For a young girl who is still developing, I'd definitely recommend getting a dietician involved.

But as you ask: the low FODMAP diet suggests excluding lactose (but not milk/dairy per se). There will only be a minimal amount of lactose in the gluten-free products you describe so that is fine. Hard cheeses like cheddar, and high-fat dairy products like butter, are both fine as well - they only contain a little lactose as well.

As I said, though: please seek the support of a dietician before putting you daughter on the low FODMAP diet. And if her stomach problems *are* caused by her allergy to gluten, you don't need the low FODMAP diet, and you'll be needlessly restricting her intake of various nutrients.

[roobiedoobie in reply to patientj]

Hiya ,

Thanks for your reply .

Her coeliac screen was negative, he suggested that perhaps she is gluten intolerant , and that he thinks a diagnosis will come in time.

At the moment I'm willing to give anything a go, I hate seeing her suffer.

He is going to refer her to gastro in 3 weeks once we have seen how this goes, he said that there aren't dieticians who do fodmaps for children in our area.

I plan to try and keep a close eye on what she is having and make sure that she is getting enough food, I was just going to make her gluten free before the referral but Dr thinks fodmaps is the way forward.

I dunno lol

[patientj in reply to roobiedoobie]

I still think it's irresponsible of your doctor to recommend the diet without professional advice. You may be able to find a private dietician even if there's a not an NHS one he can refer you to. See freelancedietitians.org/die... for individuals who are qualified paediatric and low FODMAP diet dieticians. You might even find that some can do consultations remotely.

Whatever happens, I hope you find something for your daughter that works, and that she gets better soon.

[patientj in reply to roobiedoobie]

Hope the intervention is going well so far. I asked about on Twitter for advice. One of my dietician followers provided the following link to his own blog. Some of it are things we've already said, but there were a few other tips I thought you might find useful: rmdietetic.com/2016/06/07/s...

[roobiedoobie in reply to patientj]

Thank you so much!

It's going pretty well actually , I'm just so glad she likes some fruit and eggs, and luckily she's quite used to gluten free cause of me, evening meals are going well, we're just trying to keep it clean with chicken, potatoes and veg.

And the amazing thing is she's not been begging for her buscopan and its only been a few days.

Keep telling her, it's only for 3 weeks, then she'll be referred.

[sammysmum in reply to patientj]

I have been following the FODMAP diet for over2 yrs. Foods high in fructans include wheat and flour so they are excluded in the initial 3 months. wheat free is allowed. In the reintroduction phase fructans can be introduced gradually over 3 days to see if any reaction then excluded. Other food groups have to be tried one at a time, in the same way, under guidance of the dietician. It is a very long process. I am gluten intolerant but allergic and intolerant to numerous foods, which have been discovered while being on the FODMAP diet. Hope this helps.

[ClareLou]

Nice guidance (that's the NHS own guidelines) says the fodmap diet should only be done with the supervision of a dietitian I have done the fodmap diet and it is confusing but I had the support of a NHS dietitian. The other thing with the fodmap diet is its not supposed to followed for a long time as its not balanced in terms of nutrition it's an elemination diet and as such should only be done for a short space of time. Did you doctor explain this to you and how to do the challange phase - that's the second part of the fodmap diet? Please do try to get a dietitian involved they are the experts around food and the effects on the body and health conditions GPs are not the expert in this case. When I did it I was given 2 booklets that helped a lot if your GP has googled fodmap diet and printed out the first thing that he found it may not be accurate info and my even be taking about foods from the USA ot else where that woundt be helpfull at all.

Hope this helps,

Clare

[roobiedoobie in reply to ClareLou]

Thanks for your reply, she's only doing it for 3 weeks, to see if there is any improvement in symptoms, I think that removing the gluten will help, mainly because the gluteny foods that she likes aren't brilliant for making a happy gut.

He's given me some sheets and a website to look at, he has special interest in guts, he actually did my mums endoscopy. He's just trying to do what he can before sending us to gastro where there may be months between appointments, so he's already tried laxido , fybogel and buscopan , increasing fluids, adjusting fibre, she's done a 6 week gluten challenge prior to the coeliac screen, and now that was negative , he's trying this to see if she has any improvement before the appointment at gastro, he does still think she's gluten intolerant or will be coeliac , I was going to put her on a gluten free diet anyway tbf just out of desperation . . I think I've gone off track somewhere . . Only had 2 hours sleep cause my daughter has been up in pain and being sick

Thanks

Xxx

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She also needs hospital tests to see if tgere is any other bowel condition causing her symptoms and I'm surprised your doctor has not suggested this

If you want her to have a gluten free diet then make her biscuits and bread

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I seefrom one of your replies that she is to have hospital tests and her diet shoukdn't change much as this may affect the results

[shaughnessy]

Hi Roobie Doobie, this must be so worrying for you. I totally agree with the advice above of listening to a professional dietician, in my experience GPs think they know more than they do, I've had some really bad advice over the years. I'm coeliac & dairy allergic too - it's milk protein rather than just lactose for me. Many commercially available GF foods are also dairy free - Dr Schar, Genius, Debbie & Andrew, Coco, Violife etc but some aren't which is strange because Coeliac Uk point out that the 2 issues commonly go together - welcome to the world of the 3 hour shop whilst you read every label! I make virtually everything myself now to be confident I'm not going to be ill and because I personally don't think many of the commercially made foods are that nutritious. It really isn't that difficult or any more time consuming, all unprocessed meat, fish & veg are naturally GF/DF anyway. Home made GF/DF food freezes just as well as non-GF/DF & my family now eat the same meals as me (apart from bread & I make good wholemeal bread for them in a breadmaker each week as it's the least I can do) which makes life easier, most of the time they say they can't 'tell the difference' & just enjoy it. If u private message me I can send you some recipes & recipe book recommendations I've found useful. Best of luck, your daughter is lucky to have such a caring mum.