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    You are in: Home / Community Forums / Gluten-free Diet / Celiac Disease / Grieving gluten: the six stages of mourning
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    Grieving gluten: the six stages of mourning

    Sat Feb 02, 2013 4:35 pm
    Forum Host
    I receive a monthly magazine from the society that I belong to and December 2012 had an interesting article about the grieving process that we go through when we suddenly find that we can no longer have gluten in our diet. The article was attributed to Bronwyn Goddard, a student of Dietetic with a celiac mother.

    It's life changing. You come out of the doctors office with those words going round and round in your head.... "You have Celiac Disease. It means that you must remove all gluten from your diet." You have a handful of information to read..............but from that moment on, your life has changed forever.

    The article stated that as with any loss in our lives, there is a grieving process. Starting out on a gluten-free diet can be an uphill battle that is physically and emotionally challenging.

    To win the gluten-free battle, you must reach the stage of acceptance - accepting that you need to be gluten-free, accepting that you must put in place permanent changes, accepting that you can no longer eat your favourite foods, accepting that you can't eat the same foods as your friends, accepting that you can no longer eat out without questioning every item on the menu and having the chef come and speak with you.....and so on.

    For me personally, I did grieve the loss of gluten. It took me about six months to work my way through all of the stages of grieving to reach acceptance. Now, I accept that I am gluten-free for life and I feel so much better for it too. Being gluten-free is easy now that I feel well and feel the benefits of my gluten-free diet maintenance. There is no turning back for me now.

    Stage One : Denial

    For most people this is an almost immediate reaction and occurs at the time of diagnosis. Denial is a reaction to the daunting and unwelcome news that we just aren't ready or prepared to accept. Some people have never heard of Celiac Disease or known anybody with it before. Many of us eat without thinking about what is in our food and many people have never heard of gluten before.

    One of the first things I was told is what I cant eat gluten from that moment on . It went something like this "...."You can't eat bread, pasta, cookies, pastry, pies, cakes or many of the other foods that you have eaten every day." I remember thinking if there was anything left for me to eat! Finding out that you must now be gluten-free can certainly be overwhelming!

    Here are some of the denial statements that were listed
    "No, this is not the right diagnosis. Who's ever heard of gluten anyway? Isn't that what the stars give up to lose weight?"
    "That's just one of those fad diets, that's not really for me."
    It just doesn't make sense. I've never had a food allergy in my life."
    "How is that possible? The tests must be wrong."

    Stage Two: Anger

    Feeling angry is perfectly normal. Being diagnosed with Celiac Disease or Gluten Intolerance can seem unfair and frustrating. There is nothing that you could have done to prevent it and there is no cure.

    Personally for me, I really, really, really (did I say really?) missed eating bread. I tried the supermarket breads.........I thought they were disgusting. I can't take a sandwich for lunch just isn't fair! I tried baking my own....they just weren't right either. I'm sure that even though I felt better, I also dealt with my withdrawal issues.

    Lifestyle changes can be very difficult to make without the support of friends and family. The article stated that during this stage, it is important to stop, take a deep breath, and remember that coeliac disease means a lifestyle change, and not a death sentence. With time and patience, it will get easier.

    "Everyone I know can eat anything they like. Why should I be the one that has to give up pizza, beer, sandwiches and cookies?"
    "It's almost impossible to be gluten-free unless I just stay home and eat crappy packaged gluten-free food all the time."
    "I spend all day in the kitchen and nobody will even eat what I have cooked!"

    Stage Three: Bargaining

    "I've been eating gluten-free for a month now....I'm going to treat myself now. One piece of cake won't hurt."
    "I've been eating gluten this long. I'll just eat whatever I like over the weekend and start on Monday."

    There is no current cure for Celiac Disease or Gluten Intolerance, except by the implementation of a strict gluten-free diet. Bargaining might sound harmless, but for those with Celiacs even the smallest amount of gluten is a setback in the healing process. The small intestine cannot heal if you eat gluten and any 'bargains' that you make cause damage to the small intestine. For anyone with gluten intolerance, the immediate symptoms that you may feel from that small piece of cake, just aren't worth it.

    Stage Four: Depression

    "This is worse than life is just never going to be the same again."
    "There is nothing I can eat when I go out, so I'll just stay home."
    "None of my friends or even my family understand what I am going through. Nobody else has to deal with my food issues. It just isn't fair!"
    "Why does it have to be me? I didn't do anything to deserve this!"

    Many people feel depressed during their transition to a gluten-free diet. Depression is usually felt at the same time as the understanding and recognition comes that the diagnosis was real and is not going to change. Depression symbolises the progress towards the acceptance of coeliac disease.

    For me, I bought every gluten-free flour and starch and set out to do my own gluten-free baking. I had no idea how to use flours and starches without the use of 'regular' gluten containing flour. I baked, nothing tasted right or had the right texture....that was if it was even worth eating! Many of my baking creations went straight into the bin......and added to my depression. If I wanted to eat out, I have to phone anywhere in advance to interrogate them about every item on the menu - how it was cooked, did it have gluten? Do they use stock? and so on......
    I watched others eat foods that I had previously enjoyed....I was jealous I just felt so unfair....why me !?

    Stage Five: Acceptance

    "Ï feel relieved. I have a diagnosis AND there is something I can do about it. All I have to do is eat gluten-free."
    "Ï am ready to tackle this head on."
    "I cried when I first found out that I had Celiac Disease. Now I feel much happier and healthier. I can't believe I ever cried!"
    "I feel good now. If I eat gluten, I feel it immediately. I'm gluten-free now!"

    The acceptance stage is where people come to terms with having the diagnosis of Celiac Disease or accepting that they are gluten sensitive/intolerant. There is no right or wrong period of time to reach this stage. Acceptance of the gluten-free diet marks the commitment to the change of lifestyle and a happy and healthier one.

    Stage Six: Embracement
    "I think the biggest challenge was having to read food labels, it used to take me an hour to do my shopping as I had to pick up every item and decipher the contents, now I can do it in regular time."
    "Sure there is foods I can never eat again, but I feel good and have found other foods to eat and enjoy."

    Embracement follows the acceptance stage. You begin to get creative with gluten-free food and become more satisfied with your gluten-free diet. You become excited when you find a new gluten-free product or find a new gluten-free recipe to trial for dinner.

    I've been on my gluten-free diet now for around nine years and there is no turning back for me. I can't believe how bad I felt when I ate gluten and how good I feel now. My life has changed and changed forever

    I pretty much think that everyone who finds themselves having to commence on a gluten-free diet can identify with the stages of grieving. Nobody could prepare you for the change .....but it sure helps having others around us who are supportive and just there for us
    Sat Feb 02, 2013 5:25 pm Groupie
    Accurate to a "T" !! Do not forget that the immediate family of the coeliac/gluten sufferer goes through the same process.... especially when it is your children and you are helpless to fix the problem ...
    Sat Feb 02, 2013 5:49 pm
    Forum Host
    auzzi wrote:
    Accurate to a "T" !! Do not forget that the immediate family of the coeliac/gluten sufferer goes through the same process.... especially when it is your children and you are helpless to fix the problem ...

    So true.

    I can only imagine how it must feel being a child and not able to eat the same foods as your friends. How hard it must be to attend a birthday party and as a kid, not being able to have a piece of cake with your friends.
    Sat Mar 23, 2013 8:29 pm
    Newbie "Fry Cook" Poster
    I'm hoping you may help me. After 14yrs of an undiagnosed cause for my 14yr old daughter's chronic IBS, we have decided to attempt a gluten-free diet on our own.
    It isn't denial that is holding us back from starting, but rather just feeling overwhelmed with where to start. I'm a "from scratch" cook for over 30yrs and that should be a leg up, yet it is difficult to find any consistent information on how to *convert family favourite baked goods*. The cooking is easy enough so far.
    I would like to start with substituting regular flour for coconut flour, but I cannot seem to peg down differences, if any, to baking times, temperatures, recipes that can't be converted at all....that sort of information.
    Is there a helpful website or personal information geared specifically to standard recipe conversions that anyone can share with me? We really are anxious to get started! Thanking you in advance,
    Sun Mar 24, 2013 2:09 am
    Forum Host
    I hope your daughter will gain relief from trying the gluten-free diet. For me, I could feel the difference after just a few days and still continuing to feel better even still after 9 years.

    I haven't cooked with coconut flour, as it is not readily available in Australia. I've been reading a blog and she has some tips and info on cooking with coconut flour, so you might like to have a read here - It includes a link to her favourite coconut flour cake - I was thinking that this might be a good start to try cooking with the flour and give you a feel for using it in your baking.

    The first steps to starting a gluten-free diet is to make a list of food that you can have . Being positive is a big advantage.

    You can have all fruit, vegetables, meats, chicken, fish (in their natural state- no marinades, rubs, sauces etc), all varieties of rice, quinoa, eggs, plain milk, fresh herbs.

    You can buy gluten-free baked goods, such as cakes and muffins, but home-baked is so much better and by far cheaper. The easiest way to try baking gluten-free is to purchase (or make some using a recipe from this site) an all-purpose ready blended gluten-free baking flour. The ready purchased flours will include usually three or more gluten-free flours and added gums. You can generally use these flours to try baking with direct substitute of flour for one cup of flour and up to two cups of flour successfully. Sometimes your first attempt might not quite have the results you would like, but if using one of your tried and tested recipes, the next time you bake it and make a slight adjustment you may get a great result.

    Another suggestion is to try a recipe from this site that has received favourable reviews- usually this will be an indication that it is a winner cake icon_wink.gif

    There are some 'sticky' posted threads in this forum that may be useful for you to read- gluten-free tips, ingredients and about gluten-free flours.

    I do hope your daughter finds relief with the gluten-free diet

    Sun Mar 24, 2013 3:04 pm
    Newbie "Fry Cook" Poster
    Thank you very much for your help, Julie! I''ll be checking out everything you mentioned. I think my kids and grandkids are the ones in mourning because of course, a trip to oma's house means all their favourites magically appear, not to mention being known for my Christmas cookie runs everyone receives, ha ha.
    I appreciate your compassion for my youngest and hope this switch will help at least alleviate her symptoms. And being riddled with arthritis, I'm hoping to see some benefits for myself too. It is heatening to hear that you experienced better health and continue to do so.
    Btw, I would have to purchase coconut flour via Amazon myself. It interests me in the event we may go totally grain free icon_smile.gif
    Sat Jun 08, 2013 8:17 am
    Newbie "Fry Cook" Poster
    I have recently had a suspicion that I may be gluten intolerant. I have yet to go gluten free, I'm probably still in the bargaining phase. I have been doing research however and I found a great site with baking and cooking substitutions:
    I'm hoping I can get through to the acceptance phase because these headaches are killing me!
    Sat Jun 08, 2013 9:00 am
    Forum Host
    Hi ChilliMom

    Sounds like you have a fair idea that gluten may well be your enemy and worth trying to eliminate from your diet. Give it a real try.....even if just for a couple of weeks and see how feel.

    For me, even after just a few days, I felt the difference. I hope that eliminating gluten will help you too- especially with the killer headaches!

    Be prepared for your elimination challenge. Think about what you can eat and take supplies for when you are away from home. At first it is easiest to keep to simple foods - include plain meats, chicken, fish, eggs, rice vegetables and fruit. Arm yourself with some gluten-free pastas and maybe some purchased cookies and muesli bars. Perhaps buy a gluten-free breakfast cereal.

    Check out our list of gluten-free ingredients and this might help you with items that you have already that may be suitable.

    At first I wouldn't go out an buy a heap of different gluten-free flours or starches. You may already have a gluten-free cornstarch and maybe could buy a purchased blended gluten-free flour for baking. Maybe try baking a batch of gluten-free muffins to have for morning tea or breakfast on the run.

    Sat Jun 08, 2013 9:21 am
    Newbie "Fry Cook" Poster
    Thank you, that list did help. I thought modified starch was off-limits and so many things in my cupboard contain modified starch. I'm very happy I can still have them!
    Sat Jun 08, 2013 5:42 pm
    Forum Host

    "Modified food starch is gluten free, except when wheat is noted on the label, either as "modified wheat starch," modified starch (wheat) or if the Contains statement at the end of the ingredients list includes wheat."

    With packaging, if a label states that the item is gluten-free, then you will not need to read the ingredient list as it must be gluten-free.

    The first time I went shopping it took me so long to read every single label! It does get easier though as you know the brands that were suitable- just a quick check each time you purchase as sometimes they change ingredients on you.
    Mon Jun 10, 2013 8:16 am
    Forum Host
    I saw this and had to post. I have been gluten free by my own design for the past several years. For a number of years I experienced joint pain, intestinal upsets, bloating, vitamin D deficiency, cholesterol issues and short term memory problems.

    The join point, primarily in my wrists and arms caused me to try a gluten free diet. After a few weeks several of my issues magically disappeared. The joint pain improved dramatically and the memory fog lifted. A year or so ago ago my vitamin D deficiency corrected and in lieu of the mega dose of vitamin D I now take an over the counter form. Last week I had my annual physical and my blood tests were within the normal range.

    Being gluten free is often a challenge but it is getting easier. There is a store locally that caters to special diets. Mainly low carb and gluten free. Most restaurants now offer gluten free options. There are times when I miss the ease and convenience of eating whatever but the benefits far out way the health problems I was experiencing.

    My granddaughter is having some issues and they think that gluten may be the culprit. I know other children who have gluten and other food allergies. It is difficult at times. So many of them know what they can and can't eat. Not being able to eat the birthday cake would be a tough one.

    So many people are becoming educated on food allergies and diet restrictions which makes it so much easier. No matter what the struggle for me it is so worth the effort.
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