Grief

[Googles]

Thank you everyone for the support. I was feeling better about all this, and then the anniversary of the diagnosis came around along with a lot of other stress which just kind of sent me into a tailspin. As someone mentioned I do feel like my body has betrayed me. Like it plotted against me to make everything harder, as if it wasn't hard enough as it is. I'm terrified of getting sick. I'm terrified of traveling, something I used to do easily. I now feel like my life is controlled by food, something I never really liked in the first place.

[ravenwoodglass]

Thank you everyone for the support. I was feeling better about all this, and then the anniversary of the diagnosis came around along with a lot of other stress which just kind of sent me into a tailspin. As someone mentioned I do feel like my body has betrayed me. Like it plotted against me to make everything harder, as if it wasn't hard enough as it is. I'm terrified of getting sick. I'm terrified of traveling, something I used to do easily. I now feel like my life is controlled by food, something I never really liked in the first place.

Anniversarys are hard when they are anniversarys associated with unpleasent events. Sometimes it seems no matter how hard we try they still overshadow everything good that is going on in our lives. I hope at some point this will become easier for you and that anniversary will become one to celebrate not mourn. ((((((((((((((hugs)))))))))))))))

[wasabi092]

I haven't had communion in a long time, I've been getting the nerve to talk to the pastor, I know it's nothing, it's just that I just don't feel like talking to him about celiac disease right now.

If you're Catholic, a priest should be able to get you rice wafers with their own pix to prevent CC. Still wouldn't recommend drinking the wine.

[ravenwoodglass]

If you're Catholic, a priest should be able to get you rice wafers with their own pix to prevent CC. Still wouldn't recommend drinking the wine.

Those rice wafers still have to contain a small amount of wheat. The host is gluten light but not gluten free.

[T.H.]

So sorry it's been so frustrating and frightening lately.

My own anniversary just passed, too - August 10th - and I can so sympathize. The fear of being able to eat safely can be SO difficult. I've never been a big foodie, either, and now I feel like I think about food all the time, or at least I'm forced to. And oh man, travelling, yeah - it takes so much planning, for every meal during the trip, yes? Very, very difficult and upsetting and sometimes just wanna throw back my head and scream because it feels like there's nothing left that's just EASY in life. I know that's not true, but some days it certainly feels like it is.

And really, all I can say is I wish I could just give you a nice, big hug and we could go and have a griping session about all the things that we miss and such. Sometimes, I think that's all one can do...sigh, sometimes that's all we have time to do before we have to go think about food again, eh?

Do you have any Celiac Groups in your area? Now that it's been a year, I'm finally going out to meet some fellow Celiacs. It was truly something very nice. We all went to a park, all brought gluten-free foods from gluten-free kitchens, and everyone labeled it all because so many of us have other food allergies. And it was just honestly NICE to be around people who understood what an impact this makes on our lives in today's society. If you have anything like that in your area, maybe that might be a nice place to get a good griping partner, ya know? I think at times like this, sometimes that's so very useful.

Here's wishing that some of the pain and worry will fade sometime soon. Take care.

Thank you everyone for the support. I was feeling better about all this, and then the anniversary of the diagnosis came around along with a lot of other stress which just kind of sent me into a tailspin. As someone mentioned I do feel like my body has betrayed me. Like it plotted against me to make everything harder, as if it wasn't hard enough as it is. I'm terrified of getting sick. I'm terrified of traveling, something I used to do easily. I now feel like my life is controlled by food, something I never really liked in the first place.

[rdunbar]

Sometimes I too get SO frustrated with a multitude of things surrounding living this new way, and the uncertainty of the healing process, it's like the feedbackbacj process is really muddled, you' re not sure what's going on, but my gut instict is that this is a grief that can pass, it can pass,

And there are griefs out there that don't pass, they are impossible to shake. Maybe it's just wishful thinking on my part.

I'm really only 6 months into the healing process, and it's getting better slowly realizing what I'm up against, having to cope with constantly dodging a poisin that seems to be everywhere around you,from now on out, but I'm getting more comfotrable with it, and looking on the bright side more all the time, I mean it's actually wonderful that celiac has a legitamate treatment, ie. The gluten -free diet/ lifestyle. If you take away the trigger to celiac, gluten, and you can pull that off, then it gets better, now that's really amazing compared to scenarios you run into with seemingly every other disease,. Given, you are paying a price with all the adjustments we are having to make, but it seems like a small price to pay in the bigger scope of things when you can tell that you are feeling better, and the inflammation is going down, although it's a slow process

[nikelodeon79]

I was only very recently diagnosed, so I think I'm still in the "honeymoon stage." I haven't experienced too many moments where I've been overly angry/upset... but I'm sure they will come. I definitely have times when I realize I can't have [fill in the blank] that I used to adore...

I'm sure the grief stage will come... but I'm very glad to have found this community full of people who truly understand!

What I'm doing in this early stage that helps is having fun discovering all the awesome things I can cook. Me.. who used to live of processed foods... I'm creating wonderful meals for my husband and brother. If I'm compromising and making both a gluten free meal with gluten-full side dishes for the guys, I always give a cheerful lecture on not contaminating the gluten free dishes. :-) We joke about it.. but all know that it is serious. They both have been very careful so far. I think keeping it lighthearted helps!

As far as the OP's friends... perhaps they are trying to be sensitive to your grief by not including you on food-centered events? Maybe organize a dinner party of your own and serve yummy gluten free food? If they are close friends that you don't mind sharing with, sit them down and explain that, while sometimes it is difficult for you to be around the foods you used to enjoy, their friendship is more important. Tell them that, while you know they mean well by excluding you, it hurts more to be excluded then to "face the foods."

Someone else posted that the mere sight of a gluten filled food makes them ill... I've been experiencing a similar reaction and that's where I'm venting my anger. I walked through the baking aisle at the grocery store and had to giggle at an image that popped into my mind of me with a little laser gun pointing it at all the flour saying, "Die, ebil gluten food!" LOL!

Joking aside, I'm not at all shy about talking about Celiac Disease. My life has always pretty much been an open book and this is no different. Just about everyone I know and see on a semi-regular basis knows I have Celiac (as do all of my FB friends). I do try to keep it lighthearted... trying to be cheery when I say, "Nope, I can't have that! Can't have that! Can't have that, either!" We recently had a community meal at church and I went up to the cook and asked them specifically what they'd put on the grilled chicken and if anything had been grilled with it. I made him smile when I said, "Well, Yay! I can have that!"

[Gemini]

I was only very recently diagnosed, so I think I'm still in the "honeymoon stage." I haven't experienced too many moments where I've been overly angry/upset... but I'm sure they will come. I definitely have times when I realize I can't have [fill in the blank] that I used to adore...

I'm sure the grief stage will come... but I'm very glad to have found this community full of people who truly understand!

What I'm doing in this early stage that helps is having fun discovering all the awesome things I can cook. Me.. who used to live of processed foods... I'm creating wonderful meals for my husband and brother. If I'm compromising and making both a gluten free meal with gluten-full side dishes for the guys, I always give a cheerful lecture on not contaminating the gluten free dishes. :-) We joke about it.. but all know that it is serious. They both have been very careful so far. I think keeping it lighthearted helps!

As far as the OP's friends... perhaps they are trying to be sensitive to your grief by not including you on food-centered events? Maybe organize a dinner party of your own and serve yummy gluten free food? If they are close friends that you don't mind sharing with, sit them down and explain that, while sometimes it is difficult for you to be around the foods you used to enjoy, their friendship is more important. Tell them that, while you know they mean well by excluding you, it hurts more to be excluded then to "face the foods."

Someone else posted that the mere sight of a gluten filled food makes them ill... I've been experiencing a similar reaction and that's where I'm venting my anger. I walked through the baking aisle at the grocery store and had to giggle at an image that popped into my mind of me with a little laser gun pointing it at all the flour saying, "Die, ebil gluten food!" LOL!

Joking aside, I'm not at all shy about talking about Celiac Disease. My life has always pretty much been an open book and this is no different. Just about everyone I know and see on a semi-regular basis knows I have Celiac (as do all of my FB friends). I do try to keep it lighthearted... trying to be cheery when I say, "Nope, I can't have that! Can't have that! Can't have that, either!" We recently had a community meal at church and I went up to the cook and asked them specifically what they'd put on the grilled chicken and if anything had been grilled with it. I made him smile when I said, "Well, Yay! I can have that!"

You have a sensational attitude about all this and I also experienced this type of reaction. I never had an grief moments with this diagnosis because I was just so thankful that my problem was discovered, after 20 years of being sick, and the treatment was totally under my control. It also helped that I ate very little of what most Americans eat today because, funny enough, they made me feel terrible if I did. I stopped eating fast food 25 years ago anyway so have never missed any of that.

You may not have a grief period....some people do not. I love to cook so that added to the ease of this diet. I also make jokes and keep it lighthearted....it's just the way I am and it really helps make others less uncomfortable also. People get really weird over food and how to react to someone who doesn't eat like they do. I tell them to relax....it's no big deal and definitely not to feel sorry for me. I hate that.

Good for you and I hope you continue to have such a positive and humorous outlook!

[ebaynut31]

Newly self diagnosed thru an elimination diet recommended by my gynecologist. I've suspected a gluten allergy for about 2 years but never wanted to accept it. The thought of not eating all of what I had been able to eat was just not a consideration. But a few month ago, my bloating, nautia, diarrhea, general malaise got so bad that I figured it couldn't hurt to try the elimination of gluten and man did I feel so much better.

I am one of those that is having an emotional breakdown regarding this whole life change. I am 40. I have a great job, a great daughter. I find that I am sooo angry and hungry. I sometimes find it annoying that I have to plan out all my meals and cook and have it all ready. I've found a bunch of good frozen foods tho. I'm pissed that I have to make this change but at the same time I think it explaines a lot of my dad's illnesses. I don't want to live like this forever.

Just today I said to myself that I can control how I feel and that should be of great influence on how I eat. I've been sick for 3 days because I ate one piece of bread. How stupid is it that our bodies react like this. Everywhere I go, the first thing I look for is "where's the bathroom". Sad.

I work ten hour days and I don't eat breakfast, never have. I eat lunch, usually a grilled chicken salad, and when I get home after 8, sometimes I just don't want to cook and I have popcorn cuz I know its ok to have. and I know this is not good because I am not giving my body what it needs to keep on going.

I don't think its just gluten that is bothering me tho because my symptoms have gone but not all the way gone. I've done more research into the soy, dairy, and lectin and boy if I have to eliminate those as well, then i'll just faint. lol

Mostly I wanted to say that I understand how many different feelings there are about this illness. I feel defeated. tired. annoyed, sad. frustrated. and sometimes I just wanna cry.

Thanks for listening

[thleensd]

Sometimes there's just nothing wrong with a good cry. And then another. I feel like I've done way too much of it... and I completely understand feeling like the grief won't end.

When I was at my acupuncture treatment this week, we were talking about how I'm having such a hard time with it all, especially "letting go" ... he said that I need to let myself experience those emotions and grieve. There is no way around the emotions, the only way to the other side is to barrel straight through them and allow yourself to feel the anger, pain, disappointment, frustration. It's HARD to let go of our old ideas of how social life works. Food with friends was so central. But, we'll all find our way.

And then, after the cry, the next morning, pick yourself up and make one more attempt to live life on YOUR terms. Me? I'm getting my house fixed so *I* can be the party host. And, while I, too am scared of travel and restaurant food (got hit at a seemingly VERY knowledgeable restaurant two weeks ago today and still recovering!), I found the one hotel in town with the kitchenette and will find the one health food store in town. I fully intend to show up at a two weddings next month with my own brown bag lunch. Maybe I'll even splurge on a gluten-free cupcake or cheesecake to bring with me for dessert.

My friends are getting used to me carrying my "feed bag" with me wherever I go. It becomes a non-issue.

Best.

[sahm-i-am]

When people respond with "well it could be worse" it makes me angry. It makes me feel invalidated. It makes me feel that my feelings don't matter. I'm sorry that person X suffered from disease Y. That sucks. But that doesn't mean that my distress is any less. And this just comes on top of my other health issues. It just happens to be the newest one. The one I can't hide from others since so much stuff surrounds food. Or food surrounds so much stuff. I'm told I can vent and that people understand. But then I'm also told to just 'suck it up' because it could be worse. I try to reach out for support from people who have been there too. But I feel like I'm getting my hand slapped for asking for help. Yes some people are further along in the acceptance process. And I feel like I have back slid in that process. I was dealing with it really well for a while. Now I just want to hide from the world.

I was so here at this point last week and I really just want to invite the person who says "It could be worse" to live gluten free for a month (with all the lovely side effects of course!). I still have those days, but everyone here totally understands. It is such a great place to come and read and vent. We all get it like no other. You will have good days and bad. You will find your groove. And when you meet new situations you will deal.

The conference? Can you pack alot of your own gluten-free foods? Haven't read all the previous posts, but hopefully you will have some good ideas. Read, read, read on basic naturally gluten-free foods.

Good luck - let us know how it turns out.

[diane64]

It is good to know that I am not the only one who feels frustrated. I have been gluten-free almost 2 months. I went to my first wedding after going gluten-free. My friend, the bride, arranged a gluten-free meal for me, which was very thoughtful. But before dinner...I had to watch everyone enjoy the cocktail hour (I didn't dare try anything). Then came a antipasto salad before dinner, with bread on it. Then came the salad... but wait! What if the dressing has gluten in it? So I asked for a plain salad, no dressing. When the server came around I asked her about the gluten-free meal, telling her that I am a celiac. Her response was, "Oh, you get the pasta then?" NO! I went and found the wedding coordinator. She knew all about me and made sure I had my gluten-free dinner,a chicken breast and a lot of brocoli. I won't mention the wedding cake...

But, now when I look back at the day, I remember the bride and groom, my friends that were there, the beautiful weather. I tell myself that it's the people/occasion/etc that is important, not the food.

Good luck to all of us!!

[MelindaLee]

I guess the best thing I have done to deal with limiting myself, is the same thing I did when I was trying to lose weight. I realize it is different...I can never "cheat" on this diet....but when co-workers are eating donuts, instead of things they have gluten...I think of all the empty calories...just like the "good ole' days" when I could "have" gluten, but chose to not have the calories. It's hard not to be bitter sometimes, but maybe tomorrow will feel a little brighter.

[txplowgirl]

I guess I'm one of the odd ones. It's been over a year since I went gluten free and I couldn't be happier. That's not to say, that I haven't had bad days. But not one time have I grieved. After being so sick and miserable for close to 40 years, to finally know without a shadow of a doubt that all my problems weren't "all in my head". Well, the night I finally understood that it was gluten, soy, and dairy and other foods causing this I cried with joy for several hours. My fiance thought I had gone off the deep end.

Here I am all this time later and so many things have resolved that I never in a million years thought could be caused by gluten. Yes, I miss the ease of being able to grab something in a hurry, being spontaneous, but I also am eternally gratefull to know that I will never be that sick again.

Hang in there, you will feel better.

[AvatarOfChaos]

I guess I'm one of the odd ones.

I'm another odd one. Would I love to have a donut? Sure! And I could CHOOSE to do so but I would make that choice knowing full well the price of it - both in immediate pain, several days of being sick and damage and future disease. I choose to not cheat - no treat, social event or craving is worth that price.

I am not a victim of Celiac disease. I have a treatable condition and I choose to treat it because I don't like the consequences of not doing so. I hate to be in pain, I don't want to die younger than I have to and I really, really hate throwing up.

I feel better now than I have in years. No stupid plate of pasta has so much of a hold over me that I'm willing to go back to the way I was feeling. I guess I'm fairly pragmatic and didn't do a lot of grieving. The situation is what it is and my only choice is how to change and cope. Over my life I've discovered the only thing that works for me is to focus on what I can do and what I can change, not on what I cannot. If it's off the table, it's just plain off the table.

Do I miss the food options? The ease of just stopping anywhere? Sure. But what was the price of that? My family and friends adjust and I don't make a big deal out of it in general but I'm pretty emphatic about going somewhere I can eat something or meeting them afterwards. My husband and son go out for pizza or a fast food treat on a night I'm out at a meeting or such so they try to make it easier.

Honestly, the instant fast food ban and now having to check everything has been GOOD for me. I eat a lot less junk now, I buy beef on the hoof so I know exactly what I'm getting. I can't nosh on the candy in everyone at work's candy bowl. I need to eat to do what I want to do. I do not need to make food my life's focus.

Just hang in there. It IS okay to grieve but don't let it stop you from doing what you NEED to do to be healthy and feel better.

[ebaynut31]

life has gotten better every day. i don't cheat. i did, twice, and really paid for it. I eat so much better now than ever before. I've only been gluten-free for about 4 months and what a rollercoaster. I've lost 8 lbs which is good. I have, I confess, not gone out to certain social outings because of the food/drink choices but found that if I call ahead to a restaurant or bar or whatever then I can enjoy myself. I am going to my cousin's wedding next month and am tempted to bring some of my own food/desert to enjoy with everyone else.

Thank you, all, for all you've been thru and let us know. I don't post all that often but I do read the forums. I really appreciate all of you and what we are going thru. Life is good, let's keep it that way!