Gluten Intolerance

Are you likely to be coeliac? Or just intolerant?

Just it can make a difference as to what level of gluten you can tolerate.

I'm a coeliac, was diagnosed 5.5 years ago. At first it's hard, but you do get used to it. However I struggle with cravings for things and have given in on a fair few occasions (and sometimes suffered the consequences later).

Re pizza - I've got used to making my own. I get pizza bases on prescription, but you can buy g/f ones in big supermarkets too - then just add whatever you like. My H likes them too, which is handy as they tend to come in a 2 pack. Tesco's has a particularly good g/f range of all sorts of things. I particularly like their pitta breads, cherry bakewells, Mrs Crimble bakewell slices and pretzels.

Unfortunately there's not much you can do about McDs - although the actual burgers are g/f but it's hard to eat without the bun! Hash browns are fine too. I confess I have often had the nuggets as for some reason I don't react to them, but I know I shouldn't anyway...?

The Innocent veg pots are very handy for lunch if you want something quick - most of those are g/f. I also eat a lot of jacket potatoes, cold rice salads etc.

Joining the Coeliac society was great for me - they can send you a directory of all g/f foods - listing all major supermarkets and some restaurant chains too.

Good luck - do ask if there's anything specific you want to know.

c

I think I am just intolerant - I had 1/2 a naan bread the other night and was fine, yet a chicken pie left me feeling awful the next day. Pasta is a definite no-no. It has been hard to pin point but as I said, since cutting bread and pasta and flour stuff then I am great,

I have investigated the g/f aisles in tesco etc and tried the corn pasta - not bad!!

What does confuse me is breakfast cereals. Rice krispies - I thught threy would be Ok but says they contain barley and that is bad yes?????

It depends on the level of barley TBH. The Coeliac society have something called the Codex Standard (or something like that, it's late!) which gives a maximum amount of gluten that something can contain i.e. somethings are allowed through under a certain level.

Barley malt is uses as a flavouring in a lot of cereals, but it's not nec at a high enough level to cause problems, The problem is that labelling is still not very well defined. This is where the Coeliac society directory can be really helpful. Definitely shop around for another brand to find one that either doesn't contain it, or doesn't say 'contains gluten' in which case the level is prob low enough. If you can tolerate a naan bread, then a bit of flavouring will prob be fine.

I've learnt my limits. One bite of a kids fish finger is ok, but half a piece of bread is not. Not scientific, but useful to know!

Don't forget you can't have soy sauce - get a g/f one (called Tamari) and take it with you if you like chinese.

HTH

Thanks baublegirl.

I had heard about Soy sauce. Does that mean that chinese take away is a no go? I had kind of assumed that it would be tricky as they use it in most stuff??? Obviously noodles have to be avoided unless rice noodles, but it was all the other things. Oh so confusing!!!

I have to admit, I don't really eat chinese anymore for this reason. If I do, I have special fried rice and ask them to do it without the soy sauce, then add my own at home. Rice noodles are fine.

Although again, it depends on your level of tolerance. GIven that the level of gluten in a few drops of soy sauce is fairly neglible you'd probably be fine. The medics would say not to have any at all, but real life gets in the way sometime <disclaimer, clearly i'm not a medic and am advocating a risky strategy here that is not medically recommended>

My life was visibly improved by a Krispy Kreme donut that made me eat it the other day. My excuse was that I'm 37 weeks pg, and my immune system is suppressed, hence i'm not really suffering any symptoms from eating things. However, I don't think that my Gastro Cons would buy it ? I know I need to take it more seriously, but sometimes it's hard. I'm resolving to be really good once the baby has been born.

Oh - hope you like Indian food, because that's a god send. Most is g/f or easy to adapt. I am a major curry fan, and only really have to avoid Naan bread - and I always preferred poppadums and rice anyway!

That's good to know. Thanks.

I love indian thank goodness. I had a feeling that chinese may be a bit tricky.Am pleased to hear that poppadums are ok - wasn't sure what they were made off!!!

I can totally see how the donut was neccessary!!! As you say - sometimes life just gets in the way and I know they say that you shouldn't have any gluten even if it doesn't give you symptoms, but hey not always possible!!!

You say that you are 37 weeks pregnant. By all means tell me to bugger off - but did the coeliac situation effect your ability to conceive? Me and H are on the verge of starting a family but me being so ill recently has delayed things as I want to be fitter and not horribly anaemic as I have been!! However I did read that being gluten intolerant can affect ability to conceive - or is this when it is not diagnosed and therefore not controlled.

Sorry for all the questions!

Morning. No worries about the questions.

Yes, I'm 37 weeks pg, with no 3! Was diagnosed in Aug 2003, and was told that it could affect fertility (as mine was really severe and had already caused osteoarthritis) so if we wanted kids then it was a good idea to try. 3 months later I was upduffed with no 1 which was a big surprise. I was monitored closely thru that pregnancy because they were worried about the size of the baby (had extra scans etc) but he was 8lb 12oz so no need to worry there!

Then I fell for no 2 on first month of trying, and same with no 3. I think I can safely say that I'm a lucky one whose fertility was not affected! They've also stopped monitoring me in pregnancy because it appears that all my babies are big. I'm actually a little bit worried about how big this one will be (no 2 was 8lb 9 at a week early...)

I think if you're feeling better off the gluten, then that's a really good sign. Maybe take some supplements now to get your iron levels up (and folic acid too) and just see how it goes. Good luck!

Like baublegirl said it depends if you are just intolerant (where its up to you to decide if you wish to feel ill after eating gluten but you wont have long term effects) or if your test says you have coeliac disease.

I am also waiting on my test results for this, I get mine tonight. My blood test was very high for coeliac but waiting on endoscopy/biopsy result.

Baublegirl, I dont mean to patronise you as Im sure you have all the information from medics/coeliac society etc but if you are a coeliac even the smallest crumb can do damage to your intestines. You might have no symptoms but the damage can lead to more harmful things such as bowel cancer and osteoperosis (sp). Ive been told on numerous occassions that if I am coeliac I must cut out ALL gluten, avaoid cross contamination from butter tubs, use seperate toasters of toaster bags etc. So a bite of a kids fishfinger or an occasional chicken nugget is not advised.

To the original poster, hope you get the result you want and are feeling ok.

Thanks both baublegirl and Chinatown.

I am waiting on my blood test results and have endoscopy booked (really looking forward to that!!!!).

CT I had read the same that if you are coeliac and you don't control it - even if you do feel ok when eating certain things then you risk long term damage. So I guess I jus tneed to find out which I am really and then take it from there.

CT - have you had your results yet?

Thanks CT I am aware of that, hence why I mentioned my Consultant not liking it. However, having done extensive research myself there is evidence that the amount of gluten does affect people differently. I also get them to check my antibodies fairly regularly - and having done that when I had very low level exposure and they've been fine I take a view on that, which I don't necessarily expect others to share. I'm not encouraging others to do that as I said in my post. Plus MM stated that it's unlikely to be coeliac - hence why it's not so important to be so strict.

When you've been existing on such a restricted diet for some years, it's unrealistic to expect that you'll be able to completely exclude gluten at all times. Occasionally it may even be an accidental exposure.

Not a sufferer but have a couple of friends who are: MM - haven't you been advised not to give up gluten while waiting for your biopsy? I think if you do it can give a false negative result.

No - the Dr didn't even ask when I had my blood test although I am aware that it can effect things.

The problem is that my scope is 24th June and I will end up off work for at least 2-3 days in rthat time if I carry on as I was. And I can't cope with the pain. So my plan is to have some nearer the time - they say pasta is good as is 100% wheat. It's trying to get the balance between getting useful test results and not making myself so ill that I can't get out of bed.,

It makes me mad that I have found all this out re the testing etc by reading - the Dr didn't say a word.

Chinatown - did you get your results?

Its awful that you might feel so ill that you'll be off work but you must stick with the gluten until your test. If you get a negative result chances are if your bloods and symptoms show you have it you probably will just be tested again anyway. I was told to keep at least 4 portions of gluten type foods in my diet per day (!) for at least 6 weeks before the test. It worked, just back from hosp tonight and finally have my answer that I have coeliac disease. Im just pleased I have an answer and dont have to keep on with more testing.

Hope things work out for you.

4 portions per day???? OMG.

Mind you I am still eating regular breakfast cereal like frosties and rice krispies - each morning. I am scared to eat 4 portions a day.

I am annoyed that my Dr hasn't told me that.

Dont mean to worry you but you might not have consumed enough gluten.... regular cereal like cornflakes/frosties and rice krispies are safe to eat as they dont contain gluten, they are made with corn and rice. Its wheat and barley that are no-nos, so shreddies/weetabix/cheerios etc.

My frosties say they contain barley gluten.

Anyway - have had some gluten each day for the last 3 days - and today and am now in agony and feeling dreadful. I learnt the hard way today that rowntrees pick and mix - containing fruit pastilles/gums and tuti frutis - contain wheat gluten. As does Cambells condensed soup.

I don't know how I am supposed to eat 4 portions a day. ?

Not coeliac myself but my dad is, from birth. God knows how he's gone through life without knowing the pleasure of Pizza Express... I digress...

I'd recommend Coeliac Society even if you're only intolerant as you can buy their book and have an idea of 'safe' foods. It's surprising the tfoods that contain things you may find you're intolerant to. For example, my dad always loved Toblerone but it's no longer in the book so he has to avoid it. Think it's M&S that have something similar which is ok.

/home/

HTH

Thanks guys - all advice is greatly appreciated.