1. Community
  2. Gut, bowel and stomach
  3. Coeliac Disease

Have I been Glutened?

Posted , 7 users are following.

Lvae20
Lvae20

Hey guys, so I've recently been diagnosed with Coeliacs Disease. Ever since the diagnosis I have been on a strict GF diet... however, I think I may have finally been caught out! From yesterday afternoon I began feeling very sick, had sharp pains in my stomach, terrible back ache and constant burping. I had similar symptoms a couple of months ago but I put that down to consuming too much dairy (I have been having soya since January). The mystery to me is, what could I have possibly eaten to cause these very unpleasant symptoms? This lasted all last night and I'm still feeling drained from it today. I ate some wheat-free bread on Saturday evening (I'm guessing a mistake?!) and have started eating Juvela GF savoury biscuits since Monday... everything else I have been eating is the same. I have had an upset stomach since Sunday but thankfully that stopped yesterday. Any help or advice anyone could give would be so much appreciated! I'm scared of eating anything now!! 

1 like, 32 replies

32 Replies

Prev
  • anthony10484
    anthony10484 Lvae20

    Posted

    You might find it worth joining Coeliac UK.  This organisation has a data base of 'safe' products and also has a smart 'phone app which allows a user to scan the bar code of a product and get a response to indicate whether or not it is safe - I have to add that I have yet to try this myself.

    My own experience is that there are many occasions where it is not obvious whether a product is actually gluten free.  Even simple things can catch one out, I recently made an impulse purchase of some liquorice and only found out that it contained wheat products after eating half of it!

    https://www.coeliac.org.uk/home/

    • Lvae20
      Lvae20 anthony10484

      Posted

      Thank you! I didn't realise there was also an app too... that would be so helpful. It's always tricky when one is out and about... I find I have to start getting creative in order to be able to actually eat something. I hope you were ok after eating that liquorice! 
  • natcann
    natcann Lvae20

    Posted

    Hi there

    Sorry you hear you have problems. I had a few when I was first diagnosed. The Juvela should be fine. Wheat free bread may be the culprit if it is not gluten free. Have you joined the coeliac society ? They send you the GF bible with a list of all GF products. If it's not in there it is not safe.( unless it's a new product and is clearly marked gluten free.) I found this invaluable in the early days although I tend not to get the updates every year these days.

    Hope that helps

    Good luck

    • Lvae20
      Lvae20 natcann

      Posted

      Thank you very much for your advice, I will certainly join the coeliac society! I am in definite need of a bible for food... Gluten has a way of creeping into so many different foods! 

      Thank you again smile 

  • jodie11659
    jodie11659 Lvae20

    Posted

    The only problem I have found with the app is that when my signal is rubbish in supermarkets and then I can't scan anything😟
    • anthony10484
      anthony10484 jodie11659

      Posted

      This is always a problem with using mobile 'phones.  I saw a piece in today's paper that Sainsbury's is developing an in-store navigation system which allows users to enter the products that they wish to buy and then provides a map of the store showing where they are located.  This does not, in itself, provide any help for those seeking gluten free products, other than pointing out where the Free-From section is located, but the interesting point is that this service will be provided by an in-store wi-fi system.  If this allows access to the internet then it could help to overcome mobile signal problems.  Perhaps there is also the possibility that, with a little gentle pressure, Sainsbury's could adapt the system so that it also provides dietary information.

       

    • aveline
      aveline anthony10484

      Posted

      Sigh...the UK is light years ahead of the US (which is why this American spends her time on your forum! thanks for having me!)... we have third-party apps, but so much of what we see in stores isn't "mainstream" and doesn't come up when I scan it.  Our shops haven't gone this way, but they may take it on before our gov't does.

      Good luck moving the world along for safe and easy shopping!

    • jodie11659
      jodie11659 anthony10484

      Posted

      That's interesting, I do my shopping at Sainsburys In Leeds, I may speak to the store manager see what they have to say. I know where all the gluten stuff is, because there is a quarter of an aisle designated, not much in comparison to other food. It's been able to scan other foods that I need. The other thing with the app I've found is unfortunately there are a number of products that don't scan and the system cannot find. I understand they are working on updating this all the time, I wouldn't fancy the job of the person who has to put them all in the system lol.
    • anthony10484
      anthony10484 jodie11659

      Posted

      The reason that I haven't bothered with the app yet is that I do most of my shopping from Sainsbury's on-line. Although the main local store has a wide range of gluten free products on its shelves, the on-line range is much greater. I still do some top-up shopping in-store but it tends to be mainly fruit and vegetables and items having a short shelf life - I do like to make sure that I know what I am getting!

      I can well understand that the items covered by the app may be deficient in some respects, it must, as you say, be a heck of a job to keep the database up to date. However, despite the deficiences it is still better than not having it available.

  • antpring
    antpring Lvae20

    Posted

    Sorry to hear you got glutened - my daughter has terrible symptoms even if she eats the merest breadcrumb since she has been diagnosed and followed a strict gluten free diet.  We are very wary of cross contamination.  She has been ill from putting her packed lunch sandwich on a school table that was wiped down but not crumb free, sharing a drink with her sister who had eaten a sandwich etc, etc  We have separate food prep areas, toasters, fridge, food blender etc to try to keep it all to a minimum - it is a real pain and eating out is a risk you take.  Feel for everyone with coeliac it is more than an intolerance it completely changes the way you and those around you operate.  However, it is definitely worth your health and happiness in the long run.  I was just wondering if anyone has any tips for cheering up kids who are fed up with it all??
    • aveline
      aveline antpring

      Posted

      It's funny you should ask that, antpring.  We stay gluten free at home (although my son with CD is young so when he's asleep my husband and I sometimes eat take-away with gluten), and that helps my son not think about it at home. But, in school that's another story. His district is strict about food and there are only 3 school parties per year - no cupcakes for birthdays, etc. He sits at the nut-free table due to his nut allergies (fewer children there so it helps avoid cross contamination, too), and he just knows he's "different" anyway.

      I just this afternoon wrote to the school counselor. She has various social and support groups and I asked her if she would consider one for those with food limitations. It's not just our children - there are those with juvenile diabetes, allergies/intolerances and even religious restrictions that limit what they can eat. I thought it would help if they had a group to meet with and talk about their feelings and share strategies.  Somehow I don't think it'll happen, but I just HAD to ask.

      As for home, what we do is validate his feelings - they are valid! And, we give him a reality check, too - think about all of the children who have it far, far worse (no money for food, terminal illness, etc.). He's only 7, so we're not too heavy about it, but we want him to be grateful that it's not worse and to think about more positive things. Yes, you're right - it does completely change the way we operate. It's hard on these kids and to some extent it's hard on the whole family. Where to go on holiday, where to eat if we can't pack or make our own food? Have you been near or eaten any gluten and if so did you "decontaminate" yourself and your kitchen surfaces, plates, etc.?  (It's like a biohazard where you need protocol and procedures like a chemical spill, isn't it?)

      And yet, it's almost better that way. What happens when my little guy moves out and I can't control what he's eating and how it's prepared???  We're a decade away from that but it can keep me up at night.

      Oh, hahaha, right - we're talking about cheering up our kids! smile  I think you should try buying/making delicious treats and food your daughter can enjoy and stay positive as much as you can. Validate her feelings but remind her of the good in her life.

    • antpring
      antpring aveline

      Posted

      Thanks - so true (you made me laugh with the biohazard) - we recently went on holiday to Devon with friends who I swear thought we were overprotective and slightly insane with the precautions.  I haven't started worrying yet about when she moves out (but give me time...) - just catering for her 9th birthday party  is what's on my mind.  Good advice though - I will try to begin cooking and experimenting with party food which is what she really struggles with when she gets "down" about it.  We are the same though, we do talk about children who have potentially fatal food allergies, but at the same time allow her time and space to talk about how she feels and let her know it's OK.  I think she's just having a low patch now that we are a year into it and she's aware this is for life.  Good to chat. biggrin
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.