free from- diet

Hi Sarah,

After 11 years of practice as a dietitian and 7 years of reading on the subject I am now doing a PhD on a possible expression of gluten intolerance, and the biggest problem we have IMHO is the diagnostic testing (both IgA bloods and biopsy) are fundamentally flawed - hence the reason I have been foolish enough to register for a research degree while working 30(read 45) hours a week for the NHS.

If you want the full spiel on why they are flawed with references, I can provide, but I really do try not to bore people too often!

Broadly I agree with you that no one should do a restricted diet without good evidence, but if there is health improvement on the diet, and worsening of symptoms on even trace contamination, then as long as the diet is balanced, who are we to say they are not intolerant? Our role when we encounter people like this should be ensuring they have checked that there is substantial benefit from the elimination by controlled reintroduction, and ensuring they are getting an appropriate balance of nutrients, particularly calcium, iron and zinc.

I call these "intolerant" people "ducks" - i.e. they waddle and quack, but I don't need to see the webbed feet to say they are ducks. I will spend quite a considerable time in any consultation where someone has eliminated gluten or is considerings so, explaining the pros and cons of doing the GF diet without testing. Often these people have been from pillar to post with doctors saying they are "fine", that they want to try anyway - so it is critical this is done properly.

You might find having a quick read around FODMAP - particularly the paper by Sue Shepherd interesting if you are interested in IBS, Sue by the way is both a dietitian and is coeliac herself, so she is quite interesting to hear if you ever get a chance to hear her speak.

Helen

Sarah..yes my ibs does surge and dip with stress levels and i know this is the main factor although trying to control it when im a very stressed person isn't easy! Must try to relax more! Honestly the gp's have said nothing about referring me to anyone just saying it is something i have to live with and try to control my diet. I've just lost faith in what they tell me now.

Thank you for the post helen and the info, i will have a look at that.

After thinking this was going to be a quite simple thread i am left wondering what i should be doing now! Thanks for all the helpful posts so far it's nice to know there are people on the forums able to give good advice!

Always happy to give advice Sarah - even when it's not wanted

You have every right to ask for a referral to a dietitian if you are having trouble in managing your symptoms - click here. (the bit where it says - 'such advice should only be given by a registered dietitian'). It's recommended in the NICE (National Institute for health and Clinical Excellence) guidelines, so should form the basis of care for IBS patients - your GP should be aware of this. Unless he or she is a registered dietitian then they have no right to expect you to make do with the advice they are capable of giving. I'm actually quite shocked that they would send you on to a nutritionist...

Information is power - now that you know, go back to your GP and make demands!

I have suffered with digestive problems so bad that I was doubled up in pain screaming and the symptoms didn't stop fully for a fortnight. I was so tired and ill through not being able to tolerate any real food by the end of it, it was ridiculous. My own doctor said "sometimes IBS does hurt a bit" I was living on cereal and water because everything else made me spasm.

The IBS pain was very similar to labour contractions and eventually I got an out of hours doctor to take it seriously and sort out the pain relief and refer me. My own doctor would've left me there suffering quite happily. I have multiple full blown allergies and since my diagnosis, I have only suffered a couple of mild instances of IBS pain.

There doesn't seem to be enough dietiticans these days for the people who may need them and doctors in my area seems to prefer you to go away and leave them alone.

Sing from the rooftops Sarah if you've got an issue - you might have to fight for it!

Are you able to eat corn, would polenta be OK?  And you can make most things with risotto rice that you would otherwise have made with pasta, rice doesn't have to be a boring old heap on the side.  Good luck and hope you find a solution to your IBS. 

Arborio risotto rice is fabulous!

sarah..it's always great to have advice, we only learn when others share information! I'm gonna take that referal info in and see where it gets me! Thank you so much for that. I can't beleive after all this time someone could've helped me at the start!They almost make you feel bad for seeing them and i feel like im wasting their time but now i shall go in singing and dancing!!

Sorry to hear about your own problenms liverbird,thankfully i've not been quite as bad. so true though about doctor's saying it hurts a little, why don't they try having the spasms! Glad to know you're feeling better now though.

thanks nonrunner forgot about risotto rice think i have some lurking in the back of the cupboard!

Cheers Sarah!

Its rotten when you're going through it though - I hope you feel better soon.

I am a Coeliac and was tested by endoscopies and colonoscopies as well as blood tests, which is the only way to get a true diagnosis for Coeliac Disease.  This condition can only be treated by not eating gluten for life, including Oats.  I load on presrciption pasta which is better than supermarket GF pasta, rice, quinoa, potatoes, polenta and rice cakes. I also make delicious cakes with GF flour. As a Coeliac if you carry on eating gluten it can lead to cancer of the gut.  So I would suggest to anyone who thinks they may have Coeliac Disease (not to be confused with  a wheat allergy) to consult their GP or go onto the Coeliac UK website.  I run half marathons with no problems and also ran the London Marathon in 2007 - I do not find my GF diet restrictive.  Hope this helps. 

Hi,

5 years ago I found out I was coeliac and had to make drastic changes to my diet.

 You will find that if you cannot tolerate gluten you should avoid Oats, rye, barley, couscous, msg and soy sauce too.

Doves farm do a brillant brown rice pasta, but most supermarkets also do good free from ranges, once you get used to the new textures it becomes easier - wtch the calorie contnet though, a "normal" pain au chocolate contains around 250 calories but a sainsburies free from version will have 400.

 Watch out for sausages and burgers too, gravy and flour based sauces. I no longer miss normal versions as the free from ranges are vastly improved and offer much more variety.

Quinoa is great when you're bored of rice - Good luck with the new regime - I would try it for two weeks then reintroduce one thing at a time for a week and measure your reactions so you know exactly what triggers your symptoms before cutting everything out.

Thanks Natalie - and yes I agree you do need to be careful with sauces, gravies etc and watch the calories on the free from range. 

Where do you buy Doves Farm brown pasta? - I buy their flours but have never seen their brown pasta  in the major supermarkets. 

I make my own beef burgers and buy GF sausages  from local butchers - most butchers are obliging if you ask - you can also buy GF sausages in M&S. 

Like you I no longer miss the normal versions and am amazed at the variety of GF & Free From ranges. 

I like to use quinoa as a subsitute for burger wheat and coucous.  When running in the mornings I find Sainsbury's free from porridge quite good, it does not taste like badly made rice pudding like other brands. 

Are you listening Editor - Can I suggest that Runner's World do a special on Gluten Free in their nutrition section - I am sure there must be several runners who are Coeliacs.

I've never found any g-f stuff in my local M+S's (apart from a fruit cake) - and that includes a large out-of-town store.

If you compare them with Waitrose (who'd be most similar) and the other supermarkets, I think they're disappointing as they do an extremely limited range of g-f food and I've never found any soya products (yoghurts/milks etc).

They might do damn good underwear but their "free-from" approach leaves a little to be desired

You are right regarding M&S, they do not have a Free From section; it was my hubby who found the GF sausages by reading the ingredients, although I tend to mainly use my butcher for GF sausages.  As, how much time can you spare reading ingredients!

And I now need reading glasses

My butcher will do g-f sausages, but you need to order min 5lbs - that's a lot of sausage

Mind you, he was very kind, I was looking at some lamb things they had and they insisted on checking the ingredients as they weren't sure if they were g-f.  Turned out they weren't, so to my butcher.

to my local baker who said that they made g-f bread every week and promised to call me when they had some in.  That was back in June and I'm still waiting...

I got the Doves Farm brown rice pasta from swindon pulse, when I was actually looking for Booja Booja dairy free ice cream (for my hubby - it's amazing).

 Also Mrs Crimbles do a great fresh bread (sainsburys) genius (tesco) is also good.

 Black farmer sausages are safe for coeliacs.

Tesco Finest also now do a g-f sausage, pretty damn good.

Debby and Andrews of Harrogate is g-f, but I'm not so keen on those.

Some of supermarket own-label are g-f when they are the continental versions - they don't contain wheat although aren't specifically sold as g-f - it's just the way they're made - based on French sasuages which don't generally have the rusk etc you get in English bangers.

Thanks everyone - very helpful information

I too am a coeliac ( This is getting a bit like a AA meeting) having been finally diagnosed two years ago. Most of the time I'm pretty good about it abut occassionally I admit to having the odd beer, does me no good whatsover and it will take me a week to recover but hey life's short.  Small amounts of wheat such as in sausages seems to have no effect on me, but each two slices of toast and I'll know all about it.

As far as bread goes buy a breadmaker, Doves farm flour, follow the recipe on the back of teh pack and away you go, freezes well too. To be honest i don't find it a problem to stay GF when I'm home its much harder when away on buisness trips.

Dave!! Don't do it!! Even if you don't get symptoms from small amounts of gluten, your gut knows about it and there's all those long-term consequences to think of!

I'll admit to falling off the wagon (definitely sounds like an AA meeting... ) myself, but blimey, I really knew about it! Sometimes I'd kill for a sandwich when I'm out and about, but it just ain't worth it!

Just to let you know, Mrs. Crimbles is on offer at the moment in Sainsburys. Stock up while it's a bit cheaper than usual!!