Tuesday, 7 June 2011

The Non-Positive Side of Coeliac Disease

Tonight I received an email from the Coeliac Society, in it was a request for people with Coeliac Disease to do a survey. A psychology student is doing a paper & trying to show the positive side of having Coeliac Disease. Hahahaha good luck with that one. I did the survey hoping I would be given the opportunity to describe what it’s like to have Coeliac Disease, but no it was just 4 pages of sometimes repetitive questions where I could answer ‘never’ through to ‘often’. You know those ones where you have to have an opinion & then rate it.

Now I have to say there is 1 positive thing about having CD & that would be that if you stick to the diet you tend to eat a very healthy range of foods & I’m all for that, but the negatives far outweigh the positive. After all I could eat a healthy range of foods & not have CD.

The negatives, well let’s go back to my diagnosis in January 1985. I’d had classic CD symptoms all my life but no Dr ever suspected. I’d been diagnosed with gastro enteritis so many times it was ridiculous. Anyway I’d gone to this gastroenterologist with problems after the birth of dd Emma. Turned out I had a duodenal ulcer, it responded well to treatment but on a follow up appointment he asked other questions & I described the symptoms I’d had forever. He said he’d check my ulcer had healed & performed another endoscopy. He also checked for CD, but I didn’t know that. Next appointment he said, ‘Well I’ve worked out what is wrong with you, you have Coeliac Disease.’ Great, what is CD coz I’ve never heard of it. He wrote it down, drew a little diagram of my small intestine, told me to join the CD Society, get some gluten free food from the health food shop & pushed me out the door.

I went to the health food shop & they sold me some of those big round thick rice cakes that catch fire in the toaster in 2.3 nanoseconds if you try to freshen them up. They told me I could eat peanut butter. So I lived on peanut butter on rice cakes until I got some info from the CD Society. I stuck to my gluten free diet for months & then had a follow up endoscopy to see if my intestine had healed. It had, so I had CD. I wasn’t upset, hell I was so relieved to have a diagnosis after so many years of suffering & illness, & I was so relieved to not have the horrendous stomach aches.

But then you realise that life has to change, big time. I love cakes, where some people go on pub crawls, my Mum, sister & I used to go on cake shop crawls, I kid you not. We also used to go to lovely little coffee shops & treat ourselves to something yummy. No more. Not possible. I had an Italian neighbour who made the best pizza in the world & would invite me in to lunch sometimes, no more. In fact eating out anywhere, ever, was over.

Imagine looking in the window, knowing that you can never eat any of these cakes. It SUCKS!!!

Over the years people have become aware of CD & that’s a good thing because you don’t have to explain why you can’t eat the yummy thing they are offering, but it also means you sit there with nothing, trying to look as though it doesn’t matter & you really don’t mind. The when they know you can’t eat the food they hold the plate out to you & say “You can’t eat this can you?’ GRRRRRRRRRRRRRRR I went to two Christmas parties just last year, one was bring a plate affair & there wasn’t a single thing on the table that I could eat.  I took my own food as always, but you feel very alone sitting there with a dry old gluten free sandwich when everyone else is tucking into some really yummy Christmas food. The second was a sit down luncheon where I was told there would be food for me. Of all the food on the table, the only thing I could eat was the strawberries that had been put out as a garnish!!!

If you like eating out, going to people’s homes for meals & just socializing in general then it’s hard. Over the years we’ve had people for meals but are never invited back, the old' ‘too hard’ thing. Food is such a huge thing in our lives, how many cooking shows are there now? Foxtel even has a cooking channel!!! Whenever we socialize it all revolves around food. Friends drift away coz you can’t go for coffee anymore (I’m also lactose intolerant & allergic to caffeine), you can’t do lunch. Yes I know some places offer gluten free these days but you have to be very careful. I’ve asked about GF food & they’ll say there’s only a little flour in it, it’s ok. No it’s not, not even a little bit. A Coeliac Society newsletter a few years back said that Muffin Break were now selling a range of GF muffins. I’ve never had a muffin, they came in after I was diagnosed so I was excited about that. I went to Muffin Break & saw lots of great looking muffins but which were GF? I asked, ‘Oh I think it’s those & those.’ ‘Does anybody actually know??’ No it seems no one was absolutely sure which ones, so I gave it a miss. You sometimes see a GF friand in the case with all the tasty cakes. I tried one once. Just a stodgy little lump of yuck.

Which would you choose???

There are a lot of GF foods in the supermarket now, trouble is most of them are very high fat & I’ve had to incorporate low-fat into the equation after a nasty bout of pancreatitis a while back. No known cause, but staying low-fat would be the way to go I was told. At least I didn’t have to cut out alcohol, I don’t drink, lol. Of course you have to pay 2 – 3 times more for GF foods than ordinary. A nice loaf of bread $2 odd or a GF loaf of bread that could be used in place of a brick, same weight &  texture, probably not as tasty will set you back $5 - $6.

If you see one of these little bricks of bread in your supermarket, pick it up, feel the weight, give it a squeeze, well try & give it a squeeze. Smile

Now having had my big whinge I have to say that having CD is a pain in the bum, literally, if you don’t stick to the diet, but in the scheme of things if you had to have a permanent health problem, there is a hell of a lot worse. If you stick to the diet you’re ok. It’s the way it impacts on your lifestyle that is the hard part. It’s definitely added to my agoraphobia.

SO if you have a friend or relative with CD or any allergy for that matter, please make the effort to find out what they can eat & try to have something when you ask them around. You have no idea the effect it will have on them. When I taught patchwork one of my students brought me a GF birthday cake she’d made for me. It was the first birthday cake I’d had in years & I was so touched that she’d gone to this trouble.


Polly Dolly said...

I do admire you, it is a disease that I have often thought I would not be able to control due to my horrendous sweet tooth. I have no will power, but I will always keep in mind what you said and if I ever come across someone with the disease I will be more considerate to there needsxx

Sweet Pea said...

Hi Jan, I'm almost crying after reading this post. I'm wheat sensitive and know how difficult it is to enjoy eating out. Yes, you even have to check the gravy! I also avoid any foods from the solanaceae family and it's amazing how many gluten free flours have potato flour in them. If there is one positive that I have discovered is that home made tastes SOOO much nicer! Especially when it comes to sweets. What hurts most is that the people who are supposed to be there for you are the ones that are least likely to go out of their way to be accommodating. And don't forget the hip pocket!
Your post is sure to make more people aware of food sensitivities and allergies.

Cottage Tails said...

We are an allergy family - for us ds who is very allergic he just takes his own food every where, it is easier for people not to offer food & make a fuss - which is hard on them as everyone wants to be a hostess. He has a good group of friends & they all understand - often get nice grapes or fruit in so something for him. It is going to get harder for him as he hits adult hood with weddings & parties - but he usually eats before he goes & has a snack pack in car that he eats on way home. I always have to be one step ahead of meals.
Love Leanne

Vicky said...

Reading that reminds me very much (but not to the same extremes as you) of the problems we have being vegetarian. You don't realise how meat based most restaurants, take aways and general eating out foods are. We are also very restricted as to where we can eat, and I know Tiffany has found herself at times unable to eat anything when things like pizzas have been ordered at the centre she volunteers in or at friends houses. Fuuny how people 'forget' or find it funny to try tempting you or tricking you into eating something meat based. We even have to watch out for gelatine in youghurts, lollies etc ... it's amazing where animal products can hide!!

It's disgusting to think that people with CD suffer for so long before so called professionals can identify the cause of their symptoms. It must be awful for those who are undiagnosed. There is a small positive in that there seems to be much more GF foods choices than there used to be in the past. Even we like a lot of it that we've tried. It must be terrible for people who's children have CD considering how difficult it is for adults :-(

Julie said...

I never understood CD, and the total lack of understanding is probably why you are put on the 'too hard' pile, thanks for sharing and for explaining how such a little thing as making a GF cake can be so touching!

Woolly Wanderer said...

Yep I too have coeliac as does my eight year old son, he also has type one diabetes, he was diagnosed at four years of age.

Sometimes it just plain sucks trying to find suitable food and the coeliac pescription foods cause havoc with his blood sugars so I use them sparingly.

Hope you're having a good day today

Blessings San