Just been on a retreat where I was given food containinga lot of gluten. What are the consequences for me? Anyone know? Greyton

As a UK national I am now resident in South Africa, which presents many problems. Many people don't know about coeliac disease and don't understand how strict I must be. I am hoping that joining this blog I will get help from other sufferers. Greyton

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  • Hi Greyton. Do you mind me asking how long have you been a coeliac? Why did you need to go on retreat and how long were you there for?

    You probably already know it is a bad idea to deviate from your gluten-free diet as a coeliac. How come you felt able to trust the staff to cater for your food needs? Sorry a lot of questions I know!

    It is my (still quite limited) experience that wherever in the world you are, it is better to take your own food than to risk trusting people who are clueless. Unfortunately this means I eat out much less than I used to and would only accept something like a piece of fruit or a baked potato from clueless people.

    When I get glutened I get very fatigued, get brain fog, stomach pains and the usual attachment to the toilet a few hours later. However every coeliac is slightly different in this respect - some people get no symptoms, other people get symptoms much worse than I do, that will lay them low for weeks.

    Apart from the obvious short term symptoms, eating gluten in your diet as a coeliac will put you at a higher risk of having cancer, diabetes, thyroid problems, arthritis and a number of other health conditions.

    Hope this helps.

  • Hi Regalbirdy, I have been diagnosed for about 12 years, much later in life than normal. I was on a buddhist retreat, so it was for personal reasons. Yes, I agree, it is difficult to trust people but it was something I wanted to do. I am normally quite strict, but needed confirmation that I have not damaged my body irreparably by this transgression. Thanks so much for your reply. Greyton

  • Greyton I have no idea what you have been told about Coeliac of how your condition is being managed or helped.

    However here's some key points:

    - unfortunately people make mistakes and you'll be glutened many times on a GF diet - my sister has just spent 3 weeks in Thailand at many 5* hotels where she pre-warned them of her GF needs and they still cocked up. Let's just say that Immodium became her 'little best friend' during that holiday.

    - being glutened does not mean it's all over and you're going downhill as a Coeliac

    - what is does mean is that it's triggered your immune system to attack the gluten in your small intestine and that it's probably damaged some villi and perhaps caused other reactions like feeling tried, skin problems, bowel problems (constipation or the opposite). The gluten after effects can normally last 1- 6 weeks depending on the amount consumed and how you normally react to gluten.

    - all you can do after such a slip up is drink lots of water, eat well, get good vitamins and minerals into your body and wait for nature to take it's course. Sometimes tonic water can alleviate stomach cramps, sometimes ginger tea helps with the nausea

    - think of being glutened as taking a small step back - from which you'll soon leap forwards again

    - remember the body naturally wants to be in balance and repair itself - so avoiding gluten again asap will help it do that

    It's very disappointing when places mess up and gluten you. It's normally through ignorance and accident via cross contamination. However, our motto is complain. After all if you don't how will they know that they did? By your complaining you may help another coeliac avoid feeling ill which we like to think is good karma. Did you pre-warn them you needed gluten free food and did you explain all the issues ref cross contamination of oil, pans, utensils, toasters, cooking water etc as well?

    By the way how was the retreat did would you recommend it to others?

  • Dear Fiona, many thanks for this which was most helpful. I was interested to hear about your sister as we are planning a trip to Vietnam later in the year and wondered how I would fare.

    Yes, I did pre-warn them but they weren't aware that soya sauce and hing had gluten in them. For this reason I doubt I would go on another retreat with them.

    The retreat was something I had been promising myself for some time as I had been interested in buddhism but done nothing about it. However, the Vipassana retreat was really hard for a first time. Too many hours of sitting and of course the gluten problem. Otherwise it was wonderful having ten days of silence and the meditation technique was terrific.

  • Hi Greyton.

    It sounds like you had a tricky choice to make. When your ethical/religious beliefs come up against your health needs, it does take some tough soul-searching to know what to do for the best.

    Were you able to meditate and function okay after being glutened? I am not a Buddhist but have a Buddhist acquaintance and have received some teachings from him whilst on tai chi camps. I remember one rather unfortunate summer when I missed the early morning meditation sessions because I was on the loo!

    Overall did you enjoy the retreat?

  • Hi Regalbirdy, yes I functioned okay as I don't seem to have any adverse effects other than running to the loo more than normal!

    The retreat was hard for a first timer, too much sitting but it was good to learn how to meditate properly and the ten days silence in a beautiful place was just what I needed.

    Cheers, Greyton

  • Hi yes she had the same problem they used a plum sauce that had a soy sauce in and most of all the Thai curries had items marinated with soy sauce in them (which is very different from over here where they're normally GF). However, she loved Cambodia so I suspect Vietnam would be good. Worth googling for GF bloggers who have lived or travelled there - always good tips online.

    Have you tried these guys before? getsomeheadspace.com/index.... I've been using it recently. A good mix of meditation and mindfulness. Set up by a young monk - worth a read for their background. They have lovely animations that explain the benefits of meditation and make it accessible.

    Glad you've found our site and continue to ask away. Also worth a look is the tags on the menu bar as you'll be able to view popular topics.

    Enjoy!

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