How many A-symptomatic coeliacs have started to eat gluten again?

Or have you discussed that you want to start eating gluten again with your Dr as you don't feel much better on the diet and don't have any obvious symptoms when you are glutened? Do you think to hell with it and eat gluten occasionally e.g. on holiday?

Note: this is often not discussed in coeliac circles so if people do admit to this then please do not berate them on the forum.

15 Replies

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  • I think that anyone who has been officially diagnosed with coeliac disease, whether they have symptoms or not, would be given short shift from their GP and really deciding that they don't care at all about their future health. the symptomless are more at risk than others who suffer from one crumb and should never be encouraged to eat gluten. Why should I and other tax payers pay for their health needs which they could have avoided by staying Gf? I think it's very irresponsible for anyone to suggest that anyone with coeliac disease should even contemplate eating gluten deliberately.

  • Jilp if your inferring that this post is about encouraging people to eat gluten then you have missed the point. The aim of it is to discuss and support those coeliacs who feel no better on a gf diet and have been tempted to stray onto eating gluten. It is a topic that is rarely discussed that we feel is important.

  • Well Fiona, I have to admit before I really understood the consequences of how damaging even the minutest speck of gluten could be, I did eat the occasional piece of food with gluten in it. What an absolute total fool I was .... for month after month I had symptoms - not the usual one associate with coeliac disease and I felt overwhelmingly exhausted for most of the time. My knees ached, my hip bones ached, I got banging headaches, toothaches, my feet ached - I still had no clue that it was all due to gluten. My ears made sounds, I had raging indigestion, my stomach was distended or bloated ... how was I to know the extent of foods that contained gluten. So many sites recommended foods that contained Codex wheat starch - and foods that contained gluten up to 20ppm so many sites said it was all right to eat cereals that contained malt - it was okay to eat sauces with vinegar - it was fine to eat Marmite. How was I to know all of these things are like poisons to coeliacs?

    I have learnt such a lot from joining this forum and now, thankfully I can say I know better - now I can say that I might have eaten gluten in the past but I would never risk eating it ever again!

    So thank you Fiona for a wonderful site that is full of inspiring people and a wealth of information .. I owe you and your forum more than I could ever repay. xx

  • It was end 2007 when first commenced gffoods 100%. I was doubtful about diagnosis but decided to do as told. Last year hospital doctor asked if I had tested myself with gluten. I hadnt but it put the idea in my head. Had plain small Tesco pancakes which I used to enjoy, wasnt keen but after feeling nausea wiyhin hour thought can put up with that. Laterish was violently wretching for couple hours then recovered and ok.. Weeks later had penguin biscuit and finger KitKat. not really enjoyed like I did. Same thing happened only didnt make it to bathroom, projectile vomit all over kitchen as didnt get to sink in time, very sudden after nausea and wretching for long time. Dont fancy giving it a go again. Had abdominal probs for couple years, since getting soya milk have eased a lot better than meds. Asked about Lactose test, think its being sorted, but doctor said couldnt be so as it was only diagnosed as a new baby etc., etc., Seems to think antidepressants are helpful for abdominal disturbances. Needless to say I am very much against such treatment. Will carry on with soya milk and lactose free food and hope all goes well. Suppose am lucky as dont feel unwell after wretching stops.

  • Hiya,

    I was diagnosed with coeliac disease last November by blood test and biopsy.

    I had been unwell..mainly lack of appetite, diarrhoea and weight loss and a bit of tiredness.

    I went gluten free and I hated it and still do.

    I started to get sloppy with my diet and after a month or so I just started eating gluten again.

    It didn't make me feel unwell..I did feel tired and I did have a bit of trouble sleeping but I didn't have any of the other problems.

    At this point I went to see my gp.

    I told him eating gluten didn't make me feel ill so I wasn't going to stick to my diet.

    I had a very long convo with him and he felt that I had what he called silent coeliac disease.

    He explained it as having the disease, hence the positive blood test, but that it hadn't actually triggered yet.

    He felt that the symptoms I had suffered had been down to stress(I had been told at school one day out of the blue..by the way your daughter is autistic sort it out!)

    So he said if it doesn't make you ill eat as you wish and he wrote to my consultant.

    Obviously the consultant shot me down gave me some scary stories about dying and told me to eat two table spoons of rice with cumin seeds in..yea ok then lol.

    I told the dietician that I'd had enough of the stupid diet sick of gaining weight eating staple foods but he advised against it.

    So here I am..gluten free not really feeling well anymore..I feel worse gluten free than I did eating gluten.

    I am utterly miserable as far as my diet goes but I must be a good girl and put up with it.

    Roo

    Xxx

  • Just picked up this post - have a look at purehealthclinic.co.uk & trulyglutenfree.co.uk - I reckon there is still something that is triggering a response in you & that's why you don't feel better & these sites especially the latter may explain why. It must be sooo hard to keep with the GF if you don't feel any better, but keep with it as it WILL be worth it in the long run - but find out what else is causing a reaction.

  • I was diagnosed 6months ago, andonly discovered by blood test the endoscopy(lovely)!!! Weight loss,osteoporosis and tiredness were my symptom, and if notfor those tests, i would be none the wiser, apart from the damagei was doing to my insides

  • Roo, going gf is the best for your long term health as you've obviously had pointed out to you. You are relatively new to being Gf and it does take a long time to come to terms with it. When I was diagnosed there were very few GF foods around and the the ones that were tasted so disgusting that I didn't eat them. My diet wasn't easy, no bread/crackers/pasta.....but I decided that of the foods I could eat i would make sure they were really tasty and I think this helped. 20+ years down the line, I have now forgotten what ordinary foods taste like and really enjoy the GF pasta/ crackers and some of the breads. You do need to try all the different breads to find ones you can tolerate. Change the fillings to stuff that masks the taste of the bread etc and 'refresh' all bread even the 'eat straight from the pack'. (pop it in a toaster on the lowest setting and then prop it up to cool before making a sandwich...it becomes more stretchy and less crumbly)

    It does get easier but I reckon it takes a couple of years to mourn the lifestyle you once had and accept the one you have now.

    If you'd like any help with recipes etc then please say and I'll email you. My whole gluten guzzling family actually prefer some of my Gf stuff so it is possible to have tasty Gf food.

  • HI there, this is an interesting question. Shortly after being diagnosed I thought if I had stuff in tiny little bits it would be OK. Obviously I would be indestructible ;-) So I had 2 small yum yums from M&S, oh and they tasted delicious! However 2 hours later I wasn't so happy, and for the next 3 days - not amused, it took me back to how badly I had been feeling before going gf. So now I am a Gluten Nazi - Nothing goes near me with a hint of gluten in it. It is hard, when I'm in the supermarket and mum is buying yummy cakes, but I buy myself a nice meringue and feel healthier and finally I am losing weight - thank the lord.

  • Oh Scousekitty..I am just so very jealous of you sinking teeth into that lovely meringue.....

    As its Monday..and for no other reason that I can think of...make sure that you enjoy that crsip snow white meringue on my behalf....thats what a good friend would do.

    Being Coeliac....and diabetic...some things are banned on one diet..some things are banned on the other...and if you really try...some goodies are banned on both.

    Meringues are one of those....makes sugars go so high" we have lift off.."

    I will now retire to corner and sulk for the rest of the day...

  • I also tried a bit of gluten in the beginning but so ill that its not worth it. I think Scousekitty has something here. Identify something great that is allowed on your diet and keep as a treat when everyone else is having their gluten treat. For me it's either a meringue tartlet when I want something sweet or gf home made polenta chips if I want something savoury. Here is the recipe for the meringue from the diabetic gourmet cookbook

    diabeticgourmet.com/recipes...

    And the polenta chips

    glutenfree.wordpress.com/20...

  • I Think I have said on this site that it takes so much time to get used to your diet of GF, and I suppose if you feel worse on it, then you have not given it enough time.Apricot I feel for you, I am lactose and Celiac and also now soya free, yesterday I tried KA milk which is Coconut Milk, it tasted great, but half an hour of drinking it, Indegestion and sickness, si I can not eat that. if we keep to our GF diet it is really healthy, yes can get a bit boring but I never want to feel like it did before GF. keep batteling on you will get there. and I also have to thank the site its great. :)

  • Hi, only had the small can of young coco milk drink (pleasant ) instead of lemonade. Were you diagnose lactose free as infant. I have recently gone lactose free and have hardly any discomfort now, awful pre lactose free. Pity about the KA milk.

  • no Osbourn I was Coeliac and then about 3 years aftr Lactose , and then became Soya free , so now take nothing in the dairy line at all.

  • I've been off it for almost 9 months, my last binge was on my birthday in May.....I felt so ill for weeks after and had DH all round my collar for 2 months.

    I view it as poison now....my once mourned after bitter ale is now the enemy...good thing I like ginger beer.

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