How to visit friends

Sometimes it feels like the simplest thing would be to stay home and get all your food delivered and never spend time in the contaminated wheat-ridden world. Getting people to shower and change when they came to visit would be nice. However, if this doesn't suit you, there are some precautions you can take to making it a little more likely you can enjoy your friends company and not spend all your time gazing at the door of their loo.

Take some food with you. People get uneasy when they are eating and you don't. Pack something that you can eat while holding the wrapper so that you reduce the chance of getting gluten on your food from your fingers. Remember, their sofa, chair back, novels, baby photos...all will be covered with invisible gluten. Their cutlery will live in a drawer that has crumbs in it.

Don't allow your niceness to persuade you to eat food made specially for you using normal dishes.

Accept a tea or coffee unless you have an important day following, but be aware that unless they use a dishwasher you will probably get some gluten contamination from the cup.

Take some glutenzyme capsules with you. Before I discovered these I couldn't spend an afternoon with my friends as the gut ache would start after an hour, and the brain fog an hour later, even if I didn't eat or drink anything. Taking one of these every hour allows me to enjoy my afternoon. I buy these off the Internet. Make sure you get ones that are lactose free if necessary. You can order them from your local chemist. With these I can stay for several days at my sister's house, without them I need to leave after a couple of hours (and she lives a five hour drive away; being able to stay is good).

Chose the right clothes. Wear elasticated waistbands or clothes with belts where you can accommodate a sudden six inch increase in waist size. Wear a long loose top so that the resulting gape between the zipper halves will be hidden. A long loose dress allows a lot of expansion.

Carry hand wipes with you. You can clean surfaces and hands. I like Sani-hands, which have a textured surface on one side which is great for scrubbing. I buy them in bulk off the Internet and always carry some.

Encourage people to eat as a separate activity from handling things. I meet a group of friends who share an interest in the wilder end of embroidery - we look at each others work with clean hands and that reduces the spread of gluten. I have handed someone a wipe and got them to clean their hands before looking at a book of mine...people do treat bread and biscuits as if they were clean items when the are not.

If you do get minor contamination, fennel tea can help with the colic, as well as medicines from your pharmacist. If you have a day when you need to leave the house and feel well enough to go out, an anti-diarrhoea medicine can help give you some time.

Of course, a full scale contamination probably means you wont be able to do anything else for days, but the minuscule invisible contamination issues may be manageable with some of these tips.

[Adriana]

Hi Lois, I am surprised to see the level of detail you go to, to ensure your safety. There are no doubt risks everywhere you go, as there are invisible germs everywhere you go and taking reasonable and sensible precautions is something I would agree with. However, provided you are not sucking your fingers or touching your lips everytime you touch a book, the back of a sofa or a photograph, I cannot understand how this would make you unwell. My feeling is that using too many chemicals, anti bacterial sprays and wipes will probably do you more harm then handling a cup and saucer. Reasonable precautions yes, but obsessive behaviour is stressfull for everyone including your hosts.

[Hidden]

I get ill in places where people eat wheat even if I don't touch my face or eat or drink anything. I don't know how this happens but I can only last an hour or so in such an environment before I start getting gut ache, and after a couple of hours start feeling quite miserable. I have had to give up even accepting a cup of tea at my mothers house as she washes up in a single bowl and doesn't rinse. I have learnt these things by trial and error, but it is worth remembering that the threshold for 'gluten free' is !0 parts per million. This is a very low dose, much less than would matter as an infective dose if it were germs we were thinking about.

Giving up gluten and learning how to manage these risks has transformed my health. I had to give up work I was so unwell, with lots of different problems. Most of these have resolved by going gf - and I only moved towards this very tight control because I found it to be necessary. I went on a writing course in the autumn and hoped to be able to last the few days by cooking my own food in my campervan (it was a residential course), but even with that got too unwell to participate.

I can see that you might think I am being obsessive. I would argue I am being as pragmatic as I can. Amongst other things I am a Committee member of the Slow Food society and certainly don't set out to exclude myself from the jollities of life - at least this way I can join in a bit.

[Adriana]

Is it possible there is something else that is causing your symptoms? I am not a medical person as you know, but could it be that stress and worry about cross contamination is what is ultimately making you unwell. It seems like your situation is escalating and if it is becoming impossible for you to participate in everyday rituals, then perhaps there is something other then just your physical environment which is making you unwell. I am very sorry to hear that things are so difficult for you.

[Hidden]

Thank you for expressing your concern.

I am just one of those that is 'exquisitely' sensitive to gluten.

I am very well and cheerful as long as I stay away from gluten. After years of not even being able to squeeze toothpaste out of a tube I even got a canoeing qualification, I participate in art exhibitions and run a food business.

I am not the only one who has to be this careful - I figure we act like the canaries down the mine, alerting people to problem areas.

[Jacks]

Hi Lois

I think I read somewhere that, like me, you were finally diagnosed after decades of ill health. I think there are quite a lot of us who are really struggling with our health after all that assault and it seems we are poorly if we are not hyper-vigillant. I met a man last year who had been ill all his life but constantly misdiagnosed. He was finally told his digestive system had stopped working and his body was shutting down (like it does at the end stage of cancer). He went to live with a relative and got a new GP who had a coeliac interest - bingo! A diagnosis.) Five years on and he was telling me what he had to do to stay safe. It's how we actually got talking. I've also met other people diagnosed earlier in life and they can't see what all the fuss is about.

We have to do what works for us. Being told that we are symptomatic due to stress is not helpful. It would actually be more stressful not taking control of your coeliac life.

As for contamination - a joiner was putting me a new door in and I was horrified to see he'd brought a bacon buttie with him. Although he held it by the wrapper when he left there was a fine white dust over my new (dark) worktop and the (new) door handle was sticky. I thought I'd kept hawk-eye on the buttie bag's movements. He started to tell me about his relative having CD when he screwed the bag up and threw it on the worktop! I'm not sure people get it.