Coped, But Not Faced

[tictax707]

I am seeking suggestions for how to deal with the pain of the

[Wolicki]

THe best advice I can offer is to try to focus on what you CAN have. For some people, they imagine gluten as rat poison. Really, it wouldn't make you sad knowing you can't have rat posion, right?

Eating in the dark.....doesn't sound like anything I would want to try anyway

You have control over your health and how you feel. Maybe you can use that as a help? Or you may want to go see a counselor and get it all out.

Be well.

[sandsurfgirl]

I started the grieving process right away and I'm still working through it. It's like a death in a way because you have big losses. For me it's not really the foods that are hard to take. I can make most things gluten free. It's the experiences. The quaint little pizza place with the outdoor cafe that I can't go to anymore. Or being able to be spontaneous and not consider food before I leave the house.

I say honor it. Know that it is a grieving process and let yourself go through all the stages of grief. Talk about it. Come here to this amazing fabulous group of people. Journal about it. Let yourself just sit and cry if you need to. Honor the emotional healing phase just like you honor the physical healing phase.

I am only on week 11, so I don't know what my emotional life will look like when I come out on the other side and I'm feeling great and an old pro at the diet. I think that holding onto the feeling healthy part of it is so important.

And you probably could go to a restaurant that's dark if you talked to them ahead of time and they can handle the diet. Of course that's a big IF but I wouldn't rule it out.

[tictax707]

wow - you totally hit the nail on the head. I am honestly happy with the foods I have, and comfortable making things gluten-free/CF. Back when I was first diagnosed there wasn't too much out there really. The past few years have really exploded in terms of options and knowledge and awareness. I think maybe part of my sadness lies in the fact I can't just be spontaneous like I used to. Eating out requires calling ahead, and even then there is always some mental stress in the back of my head. Leaving the house requires a plan of some sort - always. I think somewhere deep down I might be tired of it all, but it's not something you can ever quit, you know? So I think I also feel a bit "trapped." I don't even know what all the phases of grief are, so I am off to look that up. Thank you very much for the reply.

[gf-soph]

I thought the grief aspect of going gluten free was trite at first, but like a lot of people I ended up going through it any way! I am a lifelong vegetarian so I am used to having fewer choices when eating out, but at least it was a genuine choice that I was happy to make. I was so sick when going gluten free that I was happy to do it initially, I hadn't been enjoying food or eating out due to symptoms anyway.

Over time I started to feel the frustrations of the 'never' aspect of it all. You do lose so much spontaneity, you feel different, you have limitations that others dont. I think it is totally reasonable to resent this, up to a point, and you need to recognise it in order to get past it. I am still struggling, mostly as I have continued to have problems after 18 months gluten-free, and am going through more testing.

I find I have a split personality in my attitude to being gluten free. The first is a positive one, where I tell people that I'm happy to do it so that I can be well, I don

[kayo]

I can relate to your post as well. I think I'm more upset at the loss of convenience and spontaneity than the loss of the actual food itself. It means more planning in my life which at times I can really resent. I already feel overwhelmed with planning responsibilities for life in general. I'm making my way through the grieving process now and it's getting better for the most part. I accept being celiac and being gluten free but I hate that I'm an 'inconvenience' at restaurants and friend's and family's homes. I hate that eating food I didn't prepare myself causes anxiety. I lay awake until the wee hours for the cramps to come. I then drag myself into work exhausted. Invites to dinner parties have stopped. I tell everyone, please have your parties, I will bring my own food, it's not a big deal, but they feel bad. I emphasize that the company is the important part, food is secondary. Sadly in our society we gravitate around food. At times this can be a terribly lonely affliction. And at times I can take it all in stride. At the holidays I cook for people which includes several diabetics, vegetarians, some allergic to wine, some nuts, citrus, and dairy. If I can plan, cook and serve a holiday spread with those restrictions for 20 people then I can totally tackle this gluten thing. Then there's the days when I come home late from work and my sweet hubby has made a quick dinner and just as I'm about to eat I ask, did you check the ingredient? Ooops. No dinner for me. Tears. Pity party. Frustration. I think that's just how it's going to be for a bit. Ups and downs. And that's ok.

[tictax707]

I am so relieved that there are people out there feeling the same as I am. I DO feel a bit bipolar about it because I know that being gluten-free/CF keeps me healthy, and that keeps me happy, ultimately. But on the other hand, there is that social loss of sorts. It IS painful to be "different" when so much of our society revolves around food for socializing. And then there is the stress and fear that you both mentioned - I have been SOO sick in the past, and I dread having to go through that again. I guess getting over that fear is part of the acceptance of it all - as much as I wish I will never be sick again, I have to accept that sometimes I might inadvertently ingest gluten, despite my best efforts not to. I think I need to realize that there will be ups and downs, and I need to really enjoy the ups and not be afraid to face the downs. I will be sad, frustrated, lonely, angry at this disease... I'll feel like crap sometimes mentally and physically. But I will also be strong, healthy, balanced, rested, and happy. And being ok with all that is probably one of the most important aspects of the grief process: true acceptance. Up until know I have just been "functioning"...

[WheatChef]

It's unfortunate to think about how long this feeling of agony can continue. I swing rapidly between sadness and anger around food now. It's odd how the slightest little thing like a new "gluten free" snack option from a food manufacturer can feel like a lifebuoy thrown to temporarily save me from drowning in the frustration of having to call up manufacturers in the middle of the supper market just to make sure their little $3 can of sauce won't kill me.

I have pretty high sight-taste synesthesia which is probably one of the things that steered me towards cooking in the first place. Now it teases and torments me be getting me just a taste of all the food I can't eat as I walk through the grocery store, past a restaurant or just through my friends kitchens.

I have found quite a bit of release however in sharing knowledge about this condition with as many people as I can (with a stern mind to keep from sounding too preachy). Considering the projected rate of affliction is anywhere between 15%-35%, depending on which testing method you use, odds are a good deal of people you spread the word to could be having the problem as well. I guess it also helps that I have friend in food manufacturing so the more I spread the info to them, the more likely it is that future recipe formulations will have us in mind. I figure the more people I can get positively diagnosed, the quicker the revolution comes. There's just no way our current food system can continue if we ever get up to even 40% of us properly diagnosed. I make sure to let anyone who has the slightest curiosity about it know that no one ever died from not eating gluten and so it's not like it would hurt them to just try a short term gluten free diet. The more of us that are properly made aware of their condition, the more support and leverage we'll all have.

[kayo]

I've had RA most of my life so I've dealt with being different from an early age. It takes a lot of cojones to get through adolescence, the teen age years and the indecisive 20's with a physical disability. I finally felt that in my 30's and now early 40's I had gotten past the worst of all that and settled into being me, liking and loving me. Then out of the blue it seems these food intolerances have made me even more different. Cripes! I can't catch a break it seems. I'm very lucky to have a supportive group of friends and family and that helps but dealing with these diet restrictions makes me feel like I'm wearing a Scarlett D (different) on my chest. It doesn't help that I've gotten a few snarky comments from people here and there. Like, not everything is about gluten you know (when telling a friend of some symptoms/improvements I had) or another comment, you can't have all of the auto-immune diseases (when telling a family member they should also get tested). As if that's my goal? Yes, I'd like nothing more than to hog all of the auto-immune diseases <sarcasm>! I'm a roll with the punches kind of person so I'm sure these commenters thought I'd laugh but you know what, I'm sick of being sick! I don't like or want or need the extra attention or complications this brings to my life. I feel like I'm one snarky comment away from snapping. God help the next person to say something. I had a few rough weeks at work recently due to my RA and my boss made a couple of odd comments. I couldn't tell if he was kidding or being passive aggressive. After the third comment I walked into his office and shut the door and said, ok, what's up - I can't tell if you're joking or trying to tell me something, spill it. Normally that kind of confrontation would have bothered me for days, I'd lose sleep over it, I'd stress about what to say and how to say it. He said he was joking and all was good. I think he'll think twice before saying something joking/passive-aggressive to me again since he knows I'll confront him on it. I think I have just reached my limit with the universe! So maybe what I'm doing now is coping and facing. Maybe the more facing helps with the coping?

[tictax707]

I am amazed. I realize that I am a lot like wheatchef - even though I do love cooking and baking, being at the supermarket does torment me too. But of course I didn't really *realize* it. Just recently I started going to the market less because I realize I have a lot of food in my freezer, and I think I feel "lighter." I thought it was because I just had more time in the evenings, but it may also be that I am not subjecting myself to these extra (unrealized) stresses. I thank you, wheatshef, for helping to spread the word. Things are MUCH better than they were when I was first diagnosed, and I think that helps my coping ability somewhat. I need to find what my release will be...

I can hear your frustration, kayo, and I thank you for it because I think it is helping me access my own frustrations. I am SICK of being sick too!! I am tired of all this already!

I get the snarky comments every now and then, but they are different. Most people look at me and say "wow. You are such a healthy eater, and so thin! I wish I had that disease." I could roll my eyes right out of my head. They would not say that when I am eating nothing but baby food and have to plan a day around my numerous bathroom trips. But at least they are not being insensitive or rude. Props out to you for calling your boss out on the comments. I would have done the same thing - worry internally, lose sleep, feel uncomfortable and self-conscious. I hope if I get put in the situation I will buck up like you did.

I think you are right that the facing helps with the coping. Thank you guys so much for all this! I think it's really helping me get more in touch with what I am feeling.

[BethM55]

I just returned from a quick weekend trip to see my family. We traveled by car, so I was able to bring much of my own food, and contributions of a gluten-free cornbread mix and brownie mix to contribute to dinner, and Mrs. Lepers corn pasta for my dinner at the family meal on Saturday, since the main course involved breaded chicken breasts. (I ate my pasta with cottage cheese and red sauce that was safe. Pretty darn tasty!)

My family is pretty good with all this, but the comment somone here made about the big red "D for Different" on my chest really hit home. My brother in law makes jokes, my sister feels guilty because I'm doing this and she isn't, although her doc has suggested she try being gluten-free, and the general "oh, you are such a martyr" feeling I get from them makes me nuts. (good thing I'm not allergic to nuts...) I do have to say that when my BIL made french toast for breakfast on Sunday, he made sure to use my Udi's bread for mine, and made mine first to avoid cc. Gotta give credit where it's due!

Still, it's exhausting sometimes, to always have to think about what I'm eating, especially when we are out or traveling. Fortunately, word is spreading about gluten issues, and I get fewer blank and disbelieving looks these days. We have a 10 day vacation planned in May, and I'm already planning what to take with, where the Whole Foods markets are in the cities where we will be so I can re-supply, and how to manage food so I can stay healthy and feel good for the vacation. Probably a lot of salads in my future...

I had doubts about my self-diagnosis recently, and tried adding some 'regular' bread back into my diet. Mistake!! Proved to me that I do react to the gluten, or at least definitely to the wheat. I'm not willing to try again to test it.

I'm so grateful for this site, for the support and help and understanding here. I don't have to explain myself here. You all understand. What a relief!

[Nor-TX]

I am finding solice in all these comments. I just turned 60 and have Colitis, IBS, Gluten and Dairy intolerances. I also have gastro-paresis which means my food digests very very slowly, so if I slip and have some gluten it takes so long for it to pass through.

The sadness I feel almost everyday is that at my age, things should be getting a little easier, but instead I am dealing with having to inspect every food item I buy and consider everything I put in my mouth. My colitis is definitely affected by my diet and together with the gluten and dairy intolerances, my days are spent thinking about food. At night I think about what to take to work and at work I think about what to eat for dinner and the next breakfast.

I'm tired of being sad about my health.. I know there are much sicker people but there are some days I feel very sorry for myself.

[tictax707]

Omg - again, someone has hit the nail on the head of something that was adding stress but i didn't realize it. It's really draining to have to think about food ALL the time. I have to think about it all the time - not just because of how I feel and what I think my gut can handle, but because I am an endurance athlete. I have to plan and track my food intakes all day every day to make sure I am getting the appropriate calorie intake (as well as fruits and veggies and protien and calcium and vitamin D) for whatever workouts I did. If I don't, I will almost always end up being below the requirements, and that combined with my years of malabosoption has contributed to my diagnosis of osteopenia. I feel like the time I have to spend thinking and planning food is really scary, as if I have something mentally wrong with me, but the reality is that I can't set that yoke down either! uughh. But thank you for making me feel not alone in this crazy world!