Celiac / Coeliac Disease - The Effects On Family Life

Being a Celiac / Coeliac

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.

Coping With Celiac / Coeliac Disease

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.

What Is It Like Being A Celiac?

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.

Celiac Disease And Selfishness

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 Relationship With A Celiac

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.

Tips For Celiacs

  • 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.

Tips For The Family Of A Celiac Sufferer

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.

Comments 17 comments

moonbun profile image

moonbun 5 years ago from London Author

Very interesting, I'm heading right over to have a read.


infonolan profile image

infonolan 5 years ago from Australia

It's been a while since I stopped by. I have taken some more businesses to task on the issue of 'false gluten free labelling' and can note that I've surprisingly seen some fairly good response. One business I wrote about (you left a comment on it), has addressed my concerns in full at http://hubpages.com/t/175978 They no longer label their ice creams as 'gluten free'!

That being said, they, along with many others initially resorted to using a 'gluten friendly' label meaning that they could not assure that the products were 'gluten free'. Oddly enough, I discovered (after being in contact with the ACCC) that the 'gluten friendly' term DOES NOT fit the code in the FSANZ legislation surrounding gluten free labelling and is therefore an illegal term.

Businesses listing their products as 'gluten friendly' are breaking the law. The ACCC here in Australia refers to it as 'false exploitation of coeliac disease and it's implications'.

Sorry to hear your last dining experience was such a drama, surely the chef could have been more creative. I think that sometimes chefs and the food service industry just don't put as much effort into what their doing or use their knowledge to the best of their abilities. Hopefully they may learn to better understand sometime soon.


moonbun profile image

moonbun 5 years ago from London Author

Hi traffictips,

I still haven't travelled and I haven't actually eaten out since that last comment I posted. It's difficult being a celiac, hopefully with more awareness it'll become easier. One step at a time is the perfect attitude!

Thanks for stopping by :)


traffictips profile image

traffictips 5 years ago from Scotland

Thanks for the great tips - I just found out I had celiac disease 3 months ago and I'm just starting to feel a bit like my normal self now after 3 months of being gluten free. I've not felt too deprived yet, as like you I also love to cook, but I am feeling a bit nervous about travelling abroad and eating out again. One step at a time!


moonbun profile image

moonbun 5 years ago from London Author

I had an interesting meal out last night. Due to the pepper allergy I was told that there were two things I could have on the extensive menu. Grilled chicken or grilled steak, I don't eat red meat so that left one.

Then it turned out that I couldn't have the chicken grilled because of pepper on the grill. Fair enough. So they cooked it in a pan.

It was full of oil and had no seasoning whatsoever. So I sent it back. I may be a coeliac but I still have tastebuds! I cook plenty of delicious food at home with loads of seasonings, my food may be gluten and pepper free but it is as far from bland as you can get.

I do not understand why a trained chef could not put together a chicken breast with some herbs and spices, sending it out to me as just a piece of chicken with no flavour at all.

I'm so annoyed as you can probably tell.


infonolan profile image

infonolan 6 years ago from Australia

Yes, soy is in many foods that the general public underestimate. From nearly all bread to cooking oil to soup to chocolate to chewing gum to canola spray to even fruit in some countries (due to soy oil's presence in wax used by food industries to spray various fruits (particularly apples!!)).

I do most of my own cooking so am safe. Thankfully soy does not seem to be a real issue for me but I am generally careful to not consume too much non-fermented products derived from this legume.

On another note, I recently came across a burger franchise that really genuinely seemed to understand my concerns. I just wish they weren't an 8 hour drive away from me! They apparently have plans to come to my local area in the next year. Urban Burger here in Oz offer excellent quality gluten free buns which are also dairy AND soy free (Amy). They have a large number of gluten free items on their menu and there are no disclaimers at all. They have accurate allergen listings and the staff are very helpful and attentive. Their fries are also gluten free, which is another real bonus!


moonbun profile image

moonbun 6 years ago from London Author

Hi infonolan,

I couldn't agree more. Thing is, over here in the UK there are a few amazing places to eat that are gluten free (there may be more that I'm unaware of), but the disease isn't really that well known for people to claim to be selling gluten free here. I'm sure once they discover what a selling point it is they will soon take note and do the same! It's a disgrace.

I went to a restaurant called Blanc Brasserie recently, there's a few over here. I nearly had a fit when there was a disclaimer on the gluten free menu saying that they couldn't guarantee 100% gluten free. Don't think that the waiter was too pleased with me as I interrogated him over it, but all was ok in the end. Still I would choose a restaurant chain called Las Iguanas over any other right now, they are the most attentive waiting staff and no disclaimers! I feel I can eat there totally safely, as safe it's possible to get being a coeliac anyway.

I must stop by your profile the first chance I get, I'm looking forward to reading more of your hubs :)

Hi Amy,

Sounds like your diet is VERY restrictive. Something that I've found comfort in is experimental cooking, that way you don't put anything in that can harm you. I'd love to eat out more, but I know it's akward, so I enjoy cooking and making top class food at home. You basically have to go old school and make everything from scratch. If you hate cooking, obviously that isn't great, but at least you get to eat great food without worrying :)


Amy 6 years ago

I’m allergic to soy as well as coeliac can’t have a variety of gluten free breads, etc. because of ingredients like soy flour, etc. Darn! I’m really looking forward to finding some real true gluten free AND soy free fare here. Seems like soy is added to just about every product around!!! Thats my issue.

I have a significantly more restrictive gluten free diet than many others as I DO react to products even ones that contain gluten in minuscule amounts. My reaction to wheat-derived glucose syrup in products has been NOTICEABLE!!! It’s just like the LECITHIN derived from soy. Tests reveal that both these ingredients rarely detect protein content in these ingredients, however I have been told to stay away from them as people can apparently be far more sensitive than testing methods. I also get ill from foods that 'may contain traces of gluten and/or soy'. Eating out seems to be a challenge except when I'm at some 'top-class' restaurant that charges $$$

As such my diet has been EXTREMELY restrictive!

Please provide me with some views on this topic.


infonolan profile image

infonolan 6 years ago from Australia

Always a pleasure to see a response from you, too, moonbun

I have found some restaurants that don't offer gluten free menus to be quite safe. In fact, some of the ones in my area that 'overly' promote gluten free products have actually, in fact, made me quite ill.

I'm afraid to say that about a month ago, I was travelling within Northern Australia and drove through a very 'backward' township. There was a family-owned pizza restaurant downtown that had a stand-up blackboard outside quoting: GLUTEN FREE PIZZAS AVAILABLE :D!

I was quite relieved to have come across this place however, with 9-10 year olds working there (they can't get many better workers in this area), my heart sunk. The 'kids' knew little about gluten so the manager came out to speak to me. I asked about toppings and he told me he couldn't guarantee anything. We worked through ingredient lists and eventually found a topping selection that was suitable. The base was then dropped on a bench with flour. I refused to continue with my order and pay. The manager was angry that I *wasted* his time! I mentioned that they should not be advertising as 'gluten free' if they can't even guarantee anything (other than the base, maybe) to be gluten free.


moonbun profile image

moonbun 6 years ago from London Author

I'm trying a new restaurant this week and to be honest, as much as I'm looking forward to it, I'm actually quite scared. I've contacted them in advance asking if they can cater to my diet and they say they can, but as it doesn't have a gluten free menu, I'm still concerned about cross contamination.

I couldn't agree more with your comment, I just wish more people were aware of how serious coeliac disease is too.

Always nice to see a comment from you infonolan :)


infonolan profile image

infonolan 6 years ago from Australia

Thanks moonbun. Your message really drives to me. I never thought about it really closely but it's very accurate and correct. Gluten free is not easy and It's a sad truth, not only of coeliac disease, but other food allergies as well. Peanut free, well that's EASY. But, Soy free, BOY THAT CAN BE TOUGH!!!! I must admit it does sadden me to see how some see the gluten free diet. Perhaps too many individuals are misleading these restaurant establishments by telling them a 'little bit' is OK! (ones on the 'fad' diet). I'm glad to see it being made known to people how serious coeliac disease really is.


moonbun profile image

moonbun 6 years ago from London Author

Thanks infonolan, a good selection of gluten free hubs you got there.


infonolan profile image

infonolan 6 years ago from Australia

It is great to have so many good gluten free foods around these days. I'm from Australia and am sick of businesses like Domino's Pizza and Eagle Boys Pizza claiming gluten free but adding a disclaimer. Visit my hubs: http://hubpages.com/@infonolan


moonbun profile image

moonbun 6 years ago from London Author

Thanks Baileybear, I've linked to yours too :)


Baileybear 6 years ago

I too understand what it is like having Coeliac Disease. Will link


moonbun profile image

moonbun 6 years ago from London Author

Hi Amber,

Cross contimination of foods is a real problem, but hopefully with enough awareness eating out will become easier as time goes by. I also have to avoid pepper, white, black and cayenne, that takes a lot of effort!

Thanks for stopping by :)


Amber Allen profile image

Amber Allen 6 years ago

Hi moonbun

I can understand how you feel - I am only gluten intolerant so am not so badly affected - I can still touch wheat - I just can't eat it - and I don't have to be so careful about utensils.

Amber:)

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