Celiac / Coeliac Disease - The Effects On Family Life

I'm a celiac, I have been for just over 3 years, I found out it was celiac disease 14 months ago. Nothing could have possibly prepared me for the biggest struggle I have had to face during this time. It's been a nightmare of epic proportions.

If you are reading this as a fellow sufferer of celiac disease, then I know how you feel. If you are reading this as the partner, or close family member of a celiac sufferer, I have a pretty good idea how you must be feeling too.

Coping with celiac disease is an ongoing battle, daily life is no longer the same, it's impossible to think that it can be. But it shouldn't be allowed to take over our lives, both for the celiac sufferer and those closest to them.

So you've been diagnosed, or someone close to you has, it may have been recently, or it may have been a while ago. What's life like?

If someone had asked me that question a couple of months ago I would have answered that life was great. That yes I'm a celiac, but I'm also a good cook so I don't feel like I'm missing out on anything too badly. I'm still able to enjoy drinking wine, I feel great, I have an amazing relationship, work is going well and I have my goals in sight.

That was a couple of months ago.

I'm still a good cook, I don't feel remotely deprived of gluten filled foods, I'm still enjoying my wine, I actually feel healthier than I did a couple of months ago and I happen to look better too. As for the other things, well this is where celiac disease has been extremely cruel and hurtful.

I can only speak from personal experience, but with my celiac disease came selfishness.

I don't think that anyone without celiac disease can fully understand just how frightening it is to be a sufferer. You can't possibly understand how scary gluten is. It's not like 'opps, I've had some gluten, please excuse me while I go to the bathroom', it's a case of 'my body has just been poisioned by gluten and now I'm even more at risk of all the scary side effects and illnesses associated with it, plus it could take me up to a month to recover from this one mouthful of food'.

When you are so scared of gluten, so terrified of damaging your body any more than it already has been, you become selfish. Or at least, I did.

Adapting to the gluten free lifestyle is a trial in itself, but prior to diagnosis it's utter hell just trying to get through the day. If you've been there, you will know exactly what I mean. If you haven't been there, let me give you an insight:

At first you won't even be aware that food is causing you chronic stomach pains, so painful that you can barely walk at times. That you have to be on constant guard of where bathroom facilities are and that you are constanly nervous in case in case you need to use them.

Once you realize that food has some part to play in how sick you feel, you will then try to start avoiding foods when you know you are going out. You may even stop eating altogether. Good way to get an eating disorder huh?

Home becomes a safe haven more so than ever before. It's like being put back into the womb where everything is warm and cosy and nothing can possibly harm you.

Before you discover that it is gluten that is making you so sick, you feel totally helpless and alone. I thought I was dying on many occasions, and I pretended as well as I could to my partner that everything was just fine. I got away with using the 'monthly visit' as an excuse more times than I can remember.

What happened was that I became selfish in that I wanted to stay home all the time. Food became my enemy and being out and about in general just filled me with dread.

I wasn't consciously being selfish, but home was safe and that's where I wanted to be.

Once I found out that I had celiac disease life became exciting again, at least, it did for me, not for my partner. I was able to stay away from gluten and though of course mistakes were made to begin with, I felt better than I had done in years. I finally knew what was wrong with me and I didn't care that I had a disease, I was just thrilled that I could manage it by diet.

By this time, home had become my little world and I was totally focused on being gluten free. I thought it exciting that me and my partner could enjoy meals at home together again. That's where my selfishness stepped up a gear.

I didn't consider his feelings about staying home all the time. All the while I had been sick, not knowing what was wrong with me, and even once I found out I was a celiac, not once had I considered that he wanted to go out, have fun, go on holiday with me.

I had been consumed by celiac disease and all that goes with it, and I didn't see how unhappy I was making the most important person in my life.

Being in a realtionship with a celiac sufferer isn't easy. We can't do things the way other people do. Going out for the day, we'll just grab something to eat? Nope, can't do that, need gluten free food. Shall we have a romantic dinner somewhere tonight? Sure, let's find a restaurant that not only understands a gluten free diet food-wise, but who also understands that every utensil used, every pot, every pan, every touch of the human hand, it must not be contaminated by gluten!

We can't help being celiacs, we aren't following a fad gluten free diet to lose weight, we're eating a gluten free diet to keep us healthy and free from all the complications that can and do arise from eating gluten as celiacs.

There has to be compromise in a celiac, non celiac relationship, just like there has to be in all relationships. If you happen to be the one suffering, take a look around at your family and see how your health is affecting everyone else, you may get a shock. I know I did.

• Don't let the disease consume you like I did. Once you are eating gluten free you should start to feel healthier in a couple of weeks, sometimes sooner. Take this opportunity to start feeling and looking good again. If you've let your appearance slide (and let's face it, you probably have, who's thinking of looking good when you feel so shit?!) take action. Buy some new underwear, get the makeup bag out, start grooming properly again guys! It makes a big difference to how you feel and that makes for a better relationship. The sooner you do this the better.
• Stop thinking about it. Celiac disease is something that's a part of you, you aren't a part of it. You are still you just a bit different, don't be defined by your illness. It's so easy to feel sorry for yourself, but you can't let that happen.
• Stop wishing for your old way of life back, you can never eat foods with gluten in them again without getting sick. Fact. The sooner you embrace your new diet the happier you will be.
• Talk about celiac disease, the sooner more people know about it the more options we will have in eating out and going on holidays. Restaurants and hotels that provide celiacs with safe food options will get our custom over and over again.
• Laugh. If you and those closest to you can actually laugh in the face of adversity you will not only become stronger and more in control of the situation, but you'll become more bonded too.
• Be proud of being gluten free. As each week, month or year passes without any gluten being ingested, celebrate, be assured that your body is recovering from the strain that gluten had put it under. Much like an alcoholic who hasn't had a drink for an extended period of time, be joyful that no gluten has contaminated your system and that you're doing a great job looking after yourself.
  

Nothing about celiac disease is fun, there isn't a plus side, there are however many people suffering far worse than us on a daily basis. That isn't to say that life is easy as a celiac, but life isn't easy in general.

If you happen to be reading this as the partner of a celiac sufferer or as a friend or relative trying to understand the disease, there are a few things you should know:

• If you have read up on the subject and seen the long list of symptoms caused by celiac disease, realize that not every celiac suffers with the same symptoms.
• Talk to us about it, rather than us talking to you about it. When something so life changing happens, it's easy for the sufferer to become comsumed by the disease and focus on it non stop. If you mention it from time to time, we won't feel the need to go on and on about it to remind you.
• Focus on ways of getting around the limited dietry intake. Take an interest in gluten free alternatives, plan delicious gluten free meals together. You don't have to use the stodgy gluten free ingredient alternatives to make a meal, there are plenty of fresh foods that don't have gluten in them.
• Talk to us, period. If your celiac partner, close friend or relative is in the 'home space', please tell us gently that we need to make changes. Make us aware of what we're doing. Don't let frustrations build up until you can't stand it any longer. I can only speak for myself, but I was not at all aware of how selfish I had become, all I thought I was doing was looking after my health, I didn't realize that actually, I had pretty much stopped living.

Living life with a celiac isn't easy if our experience is anything to go by, but it doesn't have to put a strain on relationships, like it did ours. So long as communication is free and easy a romantic relationship (where there is no celiac disease too) with a celiac sufferer is just the same as any other.

You might find yourself heading out of town to the only place where you can get delicious gluten free stone baked pizza, or you might take a vacation somewhere you would have never considered going, just because they cater more to the needs of celiacs. You'll certainly end up with a brilliant knowledge about food if you take an interest, and you'll be eating some of the best home cooked meals if your celiac is creative in the kitchen. Life with a celiac does not have to be boring!

If you've been having a tough time with celiac disease either because you yourself are the sufferer, or because someone close to you is suffering right now, take heart, I was in a bad place not too long ago. A really dark, bad,scary place. It's taken a lot (think universally huge) of heartache to reach where I am today.

If you're the celiac sufferer, look around at your close relationships, don't bury your head unknowingly in the sand like I did. It isn't your fault, you don't deserve to be sick, but if we let this disease consume us, the people around us might be suffering too.

If you are the partner, child, relative or friend of a celiac sufferer, do us all a favor and talk to us. If you're feeling left out, let down, ignored or just plain bored, tell us gently, use kind words and explain how our behaviour is making you feel. We aren't doing it on purpose, we aren't being selfish to hurt you, if your celiac is like me, I didn't even know I was being selfish! I was just using self preservation tactics to keep myself safe and well. All I needed was a reality check about 'home space'. I needed that wake up call. Maybe your celiac does too?

Don't let celiac disease ruin your life, talk about it.