Is Anyone Lonely

[lorka150]

That's basically it. I think if you feel what I mean, you'll know what I mean.

[nogluten-]

Yeah.

[tarnalberry]

Only when I let myself be that way. Seriously, if I decide not to go to lunch with friends, or not to see family on some occasion, because of some food, then I feel lonely. And sometimes, it's the right choice. But since it has to be balanced against loneliness, it's not always. I'm not suggesting eating risky food; I'll either eat very boring, but safe food, or bring my own food, or eat before doing something social that might involve food. Of course, it also makes me look for social events and get togethers that don't include quite so much food. :-)

[pixiegirl]

Sometimes I am... I'm single and that doesn't help either (and I work at home so no office comeraderie) but sometimes it seems like I don't go out at all any more... last week some people I know were going out but to a place I know can't do anything gluten-free. So I stayed home, I did feel lonely. I went from going out probably 5 times a week to a few times a month, its different thats for sure.

susan

[Nicolette]

I think it can make you feel 'alone' rather than lonely, which is why I'm so glad I've found this message board.

I was diagnosed five weeks ago now and I find myself thinking about food all the time. Not cravings, I don't mean that, I just mean planning meals, snacks, etc, knowing what's safe and where there is a safe and clean place to prepare my food if I'm out of my own kitchen.

But I think the worse thing, is that even though my husband and family know I have Coeliacs Disease, I know that they aren't thinking about it, not unless i bring the subject up and then its 'oh, yeah, you can't have that, can you.'

Other people's attitudes don't help as we all know, especially when today I had this conversation:

Other Mother (OM) outside school - "You've got Coeliacs? Oh I know what that's like."

Me - "Really? Why, do you know someone who's got it?"

OM - "No, I USED to have it, but it only lasted about six months and its gone now. You'll probably be alright after a few months too."

I'm sure i don't need to tell anyone what I was thinking. There was no way she could have had Coeliacs. It doesn't go away! Its not a cold! I just couldn't be bothered to put her straight because she's one of these super-mums that believes her opinions are correct no matter what anyone says, so I just left it.

So that feeling of solitariness comes about because no-one else knows about the disease the way a sufferer does. No-one else is thinking about food all the time the way a Coeliac does (perhaps with the exception of those with eating disorders)

I've also found that if you mention you've got a gluten intolerance and say you have to avoid wheat, etc, people think you're following a fad celebrity diet just to stop yourself from bloating or some other stupid reason.

Nicolette.

[printmaker81]

I can definitely relate to all of these commments. I was diagnosed about 6 months ago, and just started a really rigorous graduate program. I still am not feeling very well from the disease, so I constantly feel like I am behind everone else because I have to leave the studio early due to fatigue/nausea/body pain. It's definitely a little alienating to be constantly going to school dinners, exhibit openings and parties and having to refrain from food and explain yourself. On the up side of that. Most of the students in my department are very contientious and make concensions for me all the time (Someone bought me a special plate of sushi at a party!!), so I think if you can surround yourself with the right people, it doesn't have to be so bad, but there are still times where you just will always be a little on the weird side, but doesn't everyone feel this way now and then?

[blondehart]

I definately feel as if I am different than when I ate gluten....I was the party girl who would go to every happy hour..I'd even organize them. Now I step back...if I don't feel great or don't think I can get something good that's gluten-free, I don't go. Maybe it's time to take care of myself now. I also prefer to think of this as alone time rather than lonely time.

[drewsant]

It has cut down drastically on my social life. I used to go eat at a friend's house at least once a week. I've probably eaten there 2 times since June when I started gluten-free. I can't take food with me, she would be offended, and she really doesn't understand what gluten is-(she's a nurse, too, so you'd think she would maybe) she thinks I can't eat corn or rice (so does my mother). So not safe to eat there. When I eat at my parents, for family stuff, it is usually just eat whatever is gluten-free, which usually isn't much, and watch them eat the good pasta salads, etc.

[bknutson]

It has cut down drastically on my social life. I used to go eat at a friend's house at least once a week. I've probably eaten there 2 times since June when I started gluten-free. I can't take food with me, she would be offended, and she really doesn't understand what gluten is-(she's a nurse, too, so you'd think she would maybe) she thinks I can't eat corn or rice (so does my mother). So not safe to eat there. When I eat at my parents, for family stuff, it is usually just eat whatever is gluten-free, which usually isn't much, and watch them eat the good pasta salads, etc.

<{POST_SNAPBACK}>

This is one thing I can reply to. Iam new at this but I do lunch every day with my work friends and I dont let this stop me. I love salad and I get newmans ranch dressing. At first they felt bad eating all the differatn stuff in front of me and you know, it really in truely didnt bother me. When it was compared to the pain I knew I would feel if I ate it, it was ok. I told them it was ok and I finally confinced them. So I go out and I eat salad or a steak,plain. That much I do have down. Dont let it take away your life like that. It isnt cancer. It is just a diet. Like a sugar problem or cloestoral or whatever. Be happy

[ravenwoodglass]

That's basically it. I think if you feel what I mean, you'll know what I mean.

<{POST_SNAPBACK}>

YES, I developed agoraphobia from being so sick for so long. I fight it on a daily basis, I can now go out for a couple hours during the day but have not been out in the evening now for over 5 years. I make plans to go somewhere then find reasons not to. It all boils down to many years of conditioning, you eat, you get sick, I never knew when things would strike and medicated heavily to do anything when sick. My body knows I don't need meds anymore but my mind still won't let up on the fear of an accident. I lost all my freinds because of this. Oh well I have you guys.

[gluegluten]

i know the feeling too, it's cut down on my social life...too...eating at friends' houses...errr or going out to eat with friends...

i mean i mainly eat at home now...

now i am lonely too...i know the feeling...

anyone from sc or ga here?

[jrom987]

I am so glad that I found this place! I think we are all "lonely" to some point. We also suffered a big loss when you factor in all the things we can't eat or do. I have a wonderful husband in most senses but he is tired of hearing me talk about food and Celiac 24/7. I understand how he feels but this is what consumes my life right now.

The people on this forum are great! I can see making some life-long friends.

[sonjaf]

I have had to deal with a lot of those feelings. I already had depression/anxiety before I was diagnosed. It doesn't help that you feel so alone because most people don't understand the disease, unless they have it. Depression is a common problem with celiac disease, especially when you are first diagnosed. Most of us, me included, has had to change their entire lifestyle. It's not just about what we eat. I used to stop by Chick-fil-A at least once a week, because I loved their chicken sandwiches and tea. Now I can't do that anymore, and most of the food I eat I have to prepare, which is a burden, because I don't enjoy cooking.

If you are having ongoing problems, don't be afraid to seek professional help. There are so many resources for depression, etc. Call your insurance company, a doctor, or a friend, or look in the phone book, and find someone you can talk to. Your doctor can probably prescribe meds if you need them. Most of all, hang in there. We all understand what you are going through, to various degrees.

[luvpanda]

Yeah.

<{POST_SNAPBACK}>

Can someone please help me??????? I'm desparate, I've been sick with celiac disease since July of 2005 & I've only gotten sicker, not any better. I don't have the strength or energy to even get out of bed. I've on the gluten free diet totally. Unfortunatelly, I also have gastroparesis, so the small portion of my stomach is paralized & the food doesn't go through. I don't absorb food or nutrients. I can't even get into the Dr. that diagnosed me, until next month, which is 4 months after the initial diagnosis. I've met with dieticians & have talked to 2 others that had family members with this disease, but haven't gotten much help. I do know that I'm on a totally gluten free diet. I continually pass out, lose consciousness, don't know where I am or even who I am. No one has figured out what causes this either. Is it due to the celiac? Please respond to my home email, I'm not well enough to sit in front of the computer for more than 10 minutes, every 3 or 4 days. I would welcome any advise, is anyone else experiencing these symptoms? What do I do? I've already lost my job that I've had for 20 years as I'm not able to work. I can no longer function as a contributing member of society, or even at home. My poor husband is at his wits end, not knowing what to do for me. My email is luvpanda@peoplepc.com. I would welcome any advise or direction, before, due to lack of nutrition, my internal organs start to shut down again. Thanks....Joy

[lorka150]

We should all meet up.

Anyone want to come to Niagara Falls area for a trip?

Seriously.

[VegasCeliacBuckeye]

I agree with tarnalberry....it depends on how you handle it.

Having said that, celiac disease/GI easily creates a sense of isolationsim...there's only so many times you can go through (1) rommates using your pans, (2) roomies eating your food, (3) people asking you to eat at Subway and not remembering your condition, (4) people asking you to go to Subway and suddenly remembering your condition "Oh I fogot", (5) being at a restaurant/family meal and there is nothing but salad for you...

I have been through all of these things 5000 times. Even though you get used to it, almost prepared for it, I think it still effects all of us on some degree when we have "down-time"....

I'm with ya, it stinks, but its up to us to handle these obstacles and flourish as best we can

[jrom987]

We should all meet up.

Anyone want to come to Niagara Falls area for a trip?

Seriously.

<{POST_SNAPBACK}>

How about Vegas?

[drewsant]

This is one thing I can reply to. Iam new at this but I do lunch every day with my work friends and I dont let this stop me. I love salad and I get newmans ranch dressing. At first they felt bad eating all the differatn stuff in front of me and you know, it really in truely didnt bother me. When it was compared to the pain I knew I would feel if I ate it, it was ok. I told them it was ok and I finally confinced them. So I go out and I eat salad or a steak,plain. That much I do have down. Dont let it take away your life like that. It isnt cancer. It is just a diet. Like a sugar problem or cloestoral or whatever. Be happy

<{POST_SNAPBACK}>

That's great that you love salad. I don't, and I got tired really fast with the questions about why I'm just eating salad, or whatever gluten-free thing I'm eating, and why don't I try this or that when I really would love to eat something else. I find that if I just entirely remove myself from that kind of situation, I don't have to explain anything, and I don't have a problem with tempting foods. I'm not a person that eats to stay alive. I eat because I enjoy it. And now I don't enjoy it because I can't have much of anything I like anymore. It's become a chore. I also have soy, fish, tree nut and chicken allergies, along with wheat. So not a whole lot I can eat.

I guess the issue I have is going to other peoples houses to eat. Not much choice of what to eat when you don't make the bulk of the food, and you can't order a steak off of a menu. It wouldn't bother me going to a restaurant and eating gluten-free.

[darlindeb25]

I know this will probably get me some not so kind responses, but here goes. QUIT feeling sorry for yourselves. I was sick with celiacs my whole life. I was told it was in my head, that I had IBS, colitus, nervous stomach, agorophobia, anticipatory anxiety--you name it--everything except celiacs. I was sick nearly every night that I was pregnant with my last 4 children. I was so sick with the last 2 that I couldnt leave the house for a long time. Then I raised those kids pretty much alone, sick all the time. At the age of 46 I found out it was celiacs. I went gluten free, I weaned myself off of 40 mgs of paxil and I got myself a life. There was a day when 25 miles to work was impossible for me, but I was divorced and had to work--no ifs, ands, or buts. Then I met this wonderful man online who lived 800 miles away. My first big trip ever was to meet him and I made it--I made that 800 miles. That was just 1 year after going gluten free--I was in Michigan then--now I live in his state. I have a full time job and I dont tell friends no. I dont have to eat because they are. I can have a good time without food. I love it here. I have neuropathy because of the celiacs and I dont let that get me down either. I go to the beach and my feet buzz for 3 days, but I dont let that stop me. Get up--have a life, quit being angry that you are celiac--rejoice that you are alive and you know it is celiacs that made you feel so bad--know that you can beat this. Deb

[lorka150]

I don't feel sorry for myself. I'm just a little lonely at times. Two very different things.

[drewsant]

I don't feel sorry for myself either, just frustrated at times that I can no longer eat what I want. I don't think any of us are sitting at home just letting life pass us by, just cutting back on our social lives that revolve around food. I certainly get up and go to work every day, despite having a serious disability, and multiple health issues. This is just one more thing I have to deal with in a long laundry list of issues. And some of us are still fairly new to this, so I think grieving is part of the process, so I wouldn't be so quick to assume we are all just feeling sorry for ourselves and need to get a life. I have a very full one, doing basically the same as I had before, except I've cut back on eating at other people's houses because I can't eat what they serve, and it's much easier for me to get used to the diet. It's a huge lifestyle change, and it takes time.

[TheLibertarian]

I have been feeling lonely lately because I had been afraid to go out very much. I was just so afraid I would have to run to the bathroom. I used to run all over Denver on the bus when I first moved here and just get lost for a whole day all by myself and meet people and find places I did'nt know were there. Then when I got sick, I could'nt do that any more.

Now that I know what is wrong with me, I am concentrating all my energy on getting better so I can get back out there. Your computer can be your very best friend and your most important resource if you have this disease. It's a great way to socialize with people, to shop without standing in long lines at the store, to go to college classes you can't sit through, and also to find out information about your symptoms and treatment.

[TheLibertarian]

I don't feel sorry for myself either, just frustrated at times that I can no longer eat what I want. I don't think any of us are sitting at home just letting life pass us by, just cutting back on our social lives that revolve around food. I certainly get up and go to work every day, despite having a serious disability, and multiple health issues. This is just one more thing I have to deal with in a long laundry list of issues. And some of us are still fairly new to this, so I think grieving is part of the process, so I wouldn't be so quick to assume we are all just feeling sorry for ourselves and need to get a life. I have a very full one, doing basically the same as I had before, except I've cut back on eating at other people's houses because I can't eat what they serve, and it's much easier for me to get used to the diet. It's a huge lifestyle change, and it takes time.

<{POST_SNAPBACK}>

I am so glad to hear somebody say that! I get up and go to work every day too and am really relieved that having Celiac does'nt mean I'm going to end up unable to do that. As for grieving, I did not do that at all! It took me so long to get a diagnosis, and so many other possibilities were running through my head, from IBS to the possibility of cancer, that I was actually relieved to hear it. After thinking I might actually die, not eating gluten is a pretty good outcome.

[lorka150]

Seriously... Let's all get together in Niagara Falls.

[WRowland]

I'm pretty new to this also, highly motivated and still riding a roller coaster of emotions. Just at this moment, awaiting gene test results on my husband and daughter. The step-children, my father and my brother's family are next.

Coping with any challenge is often about attitude. I'm firmly sympathetic with everything said sofar. But there is a third option. Celiacs aren't the only ones that are suffering over food choices. One of my professional functions is to perform autopsies. Trust me, 99% of Americans are eating themselves to death, one way or another, celiac or no. A grain based diet is killing everybody, it's just killing celliacs faster, if we're foolish enough to keep eating it. If that's going to change, somebody's got to be first. Like it or not, God or Fate or Mother Nature, take your pick, seems to have shoved us to the head of the line. If the only options are to make bad food choices or become isolated from the social support that all healthy people need to thrive, the whole human race is in trouble.

"Breaking Bread" has been a core social activity for time without mind. But everyone of us would benefit if food, any food, moved out out of the center to the periphery of social gathering. We can be literally the "life of the party". We can be the model for a new social interaction, that is not food based. Okay so it's tiresome to keep explaining over and over. But it's that explaining that creates a critical mass. If enough of us are explaining without withdrawing, eventually the information will "tip" and our children or grandchildren, who are likely to be the inheritors of this same challenge, will live in a different world. Remember that the gene incidence in America is at least 50%. The diagnosed are just the tip of a really big iceberg.

Generations of my family have died from diabetes, alcoholism, complications of osteoporosis, etc. All of these are likely complications of un-recognized celiac.

My father was diagnosed diabetic 40 years ago, and has managed his disease far better than any before him and will likely live out his life with a quality of life none before him could hope for. I have flirted with, but thusfar have avoided diabetes, and thanks to my celiac diagnosis, have information that gives me a real chance to never develop it. My children will be educated to the connection between celiac and diabetes, and have the choice to avoid it altogether. I'm praying that my grandchildren will no longer say that diabetes runs in the family, because they will have adapted to a grain free diet early enough in life to make that true.

I get it that this is a rare safe place to whine and grieve for the very real loses that we're all experiencing. I need this safe place to come to just as much as you do. But I also need a kick in the pants to help we get out of self-pity. And to remind me that I'm not the only one involved in all this, and far from the only one with something at stake.

We celiacs in an odd position. When I was in college 30 years ago I was dazzled by the prospect of mapping the human genome and all the medical advances that would be born out of that information. We are living in the first generation to actually be able to know our genetic makeup, and have to live with the knowledge.

We can know our genetic status, at least relative to celiac, know it's medical consequences and remedies. And we have to live with the emotional consequences and find a path through all the changes needed to adapt. Soon enough, that kind of adjustment will be as much a part of the human condition as birth, puberty, coupling, parenting, aging, etc. We're just among the first to have that kind of knowledge. If we can learn how to grieve AND how to flourish, everybody, literally the whole human race, wins. You're part of that, your struggle may be lonely at times, but not meaningless, not futile, not even personal. BE PROUD.

BTW, I draw great strength from a small audiobook on coping with disease and grieving for yourself at the same time called "Morrie in His Own Words". "Tuesday's with Morrie" was written by Morrie Schwartz's pupil, but his own comments are much more powerful. My first and still strongest reaction to the book was "this is what a grown up looks like".