Talk to me about coeliac disease/gluten intolerance

[Imnotaslimjim]

Late last year I gave up wheat and gluten after thinking I was maybe intolerant. Within a couple of weeks I felt fab.

Recently I've been havign the odd bits, but then regretting it, as I always feel lousy afterwards. I get a headache, bloating, loose stools for a few days and get really sleepy/lethargic. And very grumpy

Is it worth being tested? Or do I just get on with it? I've been reading about other complications it can cause (osteoporosis, anaemia etc) and getting a little worried

You can just get on with it - the downside of testing is that you'd need to be back on gluten for 6 weeks before a test. I'm diagnosed, but don't get any medical help for the CD, so it makes no difference

Thanks CMOT, you've pretty much said what I'm thinking. Don't see the point in making myself ill for 6 weeks when the only benefit I can see from being tested is I would possibly get food on prescription. And it would be cheaper to buy it than pay prescription prices!

I've been gluten free for about 5 years without a diagnosis now; like you, I lapse occasionally and regret it. I just can't face eating enough gluten to get a diagnosis, and I wouldn't start eating gluten even if I was tested negative. For me, the symptoms were triggered by a mystery virus which in turn was linked to massive family stress, and the massive family stress issues have carried on during the last five years, so that I have never felt I could afford to make myself ill deliberately when I have so much else to deal with all the time. It's a shame, isn't it? I think the main advantage of a diagnosis is probably being able to join the Coeliac Society and use their information about foodstuffs, etc, but then labelling is so much better these days that I think it's much easier to avoid gluten than it used to be, especially if you don't react to a tiny trace.

Thanks for the info Alice.

I don't think I could eve3r say what triggred mine, though I do know I had a hiatus hernia (diagnosed 2 years ago) and the symptoms from that have gone since giving up wheat!

Can you not join the coeliac society without having been tested? Seems a bit silly to me.

And you''re right, labelling is loads better these days. I've been trying to perfect a GF loaf myself (I'm a homebaker by trade) but I'm yet to get anything close to edible. Have any of you tried the Genius range of foods? The only thing I miss is a decent slice of toast. I caved this morning and had four a couple of slices and now feel rough!

Yes, I think Genius bread is great, almost as good as bread. The only thing I have found that I really can't substitute effectively is Yorkshire pudding - GF ones just don't rise properly and taste like rubbery cardboard IME.

No, you can't join the Coeliac Society unless you have an official diagnosis, nor can you buy their literature without one.

Definitely going to try and get some then! Our local Asda doesn't sell it. Tesco does according to their website, but nearest one is half hour's drive away

I can make GF yorkies. I just substitute with GF plain flour, and turn them once they've hardened. Had them over Christmas and most of my family couldn't tell!

You can become a subscriber to the Coeliac Society if you don't have a diagnosi. It is £15 per year.

My DH is coeliac. He had a diagnosis following his Mum stopping eating gluten - her GP mistakenly told her to just stop eating it and she also isn't happy to go back on to get a proper diagnosis. If you get a proper diagnosis, you will be able to get prescription foods, which, depending on your local health authority and how generous they are with it, will save you money, especially if you get a pre-paid prescription card for the year. With a proper diagnosis you will also get access to other services like dietician, bone scan, etc.

Another consideration is that coeliac often runs in families. It is possible to have it but show no symptoms, so you would want to get your children tested. If they have it, but show no symptoms, they could be doing huge damage to their bodies. One of our Dss was tested at hospital as he was already getting weekly blood tests at the time because of some medication he was taking, but the other we did at home, with a home testing kit. It's a very quick pin prick. They both tested negative, but it can manifest itself in later life, so we'll need to keep a look out for any symptoms.

The whole gf thing has not been nearly as bad as we thought. Unless you are used to eating loads of convenience foods, main meals are ok and the food available has improved tonnes, even since DH was diagnosed three years ago.

I can get Genius bread in Morrison's or Waitrose - both tend to sell out quickly on Fridays though!
Thanks for that, GlamandSpan - I think they must have changed that, because unless I'm wrong you used not to be able to join without a diagnosis.
2madboys, I've read that they now think up to 1% of the population could be gluten intolerant or coeliac. There must be an awful lot of undiagnosed people wandering around out there...

Gf yorkshires ; 90g cornflour, 4 eggs, milk to double cream consistency, whisk together - cook as normal yorkshires - swear you will not be able to tell difference .....

OP, I also gave up gluten w/o dx when my ds had to go gf and I am a totally amazed convert.

I also came to the conclusion that my health was more important than a piece of paper and even tho my ds was able to obtain prescriptions, I soon realised that he can't get 100% health living off processed substitutes and not kept it up. After all, veg, meat etc are gf anyway and the key to us was to rebuild the health that way. I don't buy bread at all now and use rice cakes only when travelling. I don't bake much either and feel better for it

Tbh although we did get the coeliac UK food directory (they offered me a past year copy) for free, I only used it a handful of times as recipes and processed foods change so much that an annual publication won't keep up and you have to read labels anyway.

Don't forget you can join forum for free, my fave is celiac.com, but there is also a uk forum (after a couple of years I don't even visit there muchanymore ). But the combined knowledge there is way more than what you would hear from a dr or dietitian and of course you can search for scientific/medical gluten papers on internet anyway.

Thanks for your opinions everyone

I think for now, I'm going to just stay GF and get on with it. Getting prescription food won't really save me that much money so it isn't worth it.

nightcat, thanks I'll have a look into other forums and see what I can find

This is a good forum

night cat, could I ask how you felt better giving up gluten?

Ernest, my bloating has completely gone, my nails stopped falling apart, I don't feel lethargic and tired anymore, my hair has NEVER been better, first time I grew it longer and it's got body and waves, where before it looked like an old lady's thin and couldn't hold any style. I lost weight and feel light, springy and bouncy :) probably more

Night cat, you could be me posting, except I never thought the hair/nail health was connected

I'm hoping now I've come to the decision to step away from the gluten again I'll lose weight again. I'm currently 19 stone and always struggled with my weight