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Is Anyone Lonely

lorka150

By lorka150
in Coping with Celiac Disease

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darlindeb25 Collaborator
darlindeb25
Posted

Dont think I havent been in the same spot as everyone of you. And not all of you are new to this idea--if you have been gluten-free for a month or so, I can understand. I have been gluten-free for over 4 yrs now and I still grieve the foods I miss, but I dont cry about it, I dont stay away from friends. You cant have the food, that's all there is too it. I cant have wheat, rye, barley, oats, soy, or corn--I am very allergic to many scents--the doc I work for had an orange scented room deodorizer spray that I mentioned they shouldn't use around me--he didnt hear me and sprayed it--they almost had to call an ambulance for me. Patients perfumes sometimes set me off. I have nasty headaches everyday, I have neuropathy from being undiagnosed for so long. I had a nasty sunburn this summer and the doc told me to get hydrocortisone cream for it--I was allergic to it. I have to be so careful with soaps, lotions, and shampoos. I break out in hives at the drop of a hat. I have 2 bad knees which hurt so much when I go to the beach and my feet buzz for 3 days--but I keep going. You might think you arent feeling sorry for yourselves, but you are. Stop fretting about what you cant have and remember what you do have. You have your lives back. I have had diarrhea maybe 2 times in the last 10 months and only one of those times was from gluten--a med for colds! The other time was from tomatoes--oh yeah, I cant have tomatoes either. Thank God kissing is safe for me! My friends at work watch out for me too. I was eating some M & M's one day and a work friend almost knocked them out of my hand thinking I didnt realize what I was doing! I am 50 now, I was sick for 30 yrs, at least--so remember, I know where you are all coming from and I decided to not feel sorry for me and move on--there is a big, wonderful world out there! Deb

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gluegluten Newbie
gluegluten
Posted
...QUIT feeling sorry for yourselves...

<{POST_SNAPBACK}>

I don't feel sorry for myself, It's just interaction and going out for meals with friends

[i am a college student] so sometimes they want to get pizza from X pizza parlor...where they dine in...nothing for me to eat yarr...but a coke is nice... I just figured out I can have that :-)... yay... so nothing will hold me back now.

-eye

tarnalberry Community Regular
tarnalberry
Posted

It seems that part of the problem is a boundaries issue. Your friends/coworkers/family are over stepping your personal boundaries on what questions you find acceptable to be asked and what you don't. Then the key becomes politely enforcing your boundaries. If someone pesters you with "why don't you try that?" or "why do you always have this?", enforce your boundaries and say "that's my choice" and if they persist, refuse to engage, "because that's my choice". There isn't any debate, any pestering, or anything else. If someone has chicken every time they go to a restaurant, and they always say "that's what I want", you can't really argue with. Period. There's no sense in arguing with someone else's "want", because it's subjective. You can also, in a situation where it's repetetive over multiple instances, simply say that you don't like attention brought to your food selections. It doesn't seem a food issue so much as a personal question issue.

floridanative Community Regular
floridanative
Posted

Well I'm just now just getting out of denial. I actually let my sister-in-law and Mother almost talk me into believing that there's no way I could have celiac disease or GI because no one else in my family has it. I know that means nothing IF they really dont' have it. Doubt anyone will get tested regardless of what my biopsy shows.

Anyway, I'm just now compiling the lists for gluten-free food and non food products now so I can start the diet after the biopsy in a month. I'm already getting down about it. Family is freaked about Christmas dinner but since my husband is doing most of the cooking I'm not really concerned about that. Can't get frozen turkey (according to butterball), blah, blah. I'm in sales and have to take clients out to lunch fairly frequently. This seems surreal to me at times and I wake up thinking I had this weird dream where I had a totally freaky disease where I couldn't eat most things I really like. Then I realize I'm not dreaming after all. Then I try and think positively that at least I don't have cancer which what the dr. was looking for initially. But it's not always easy to put on a happy face. I'm one of the lucky ones with anemia as my main symptom and I read about others in my same situation that are totally miserable on the diet since they felt fine before. I know I'm feeling very anxious about it all so I may ask for an rx for an anti-anx. med if I start feeling even more upset. :unsure:

pixiegirl Enthusiast
pixiegirl
Posted

I can't speak for others but I don't think I feel sorry for myself because of my Celiac, I accept it for what it is and deal with it, I don't whine and I really don't "grieve for the foods I use to eat.

However.... that doesn't change the fact that socially my life has changed some because of it. I don't go out with my friends as much as I use too... they sometimes do change where they go for me but my choices are very slim around Cape Cod where I live. They often feel like pizza, beer, fried clams, DJ's wings and at a lot of these places there is nothing I can eat, so I don't go.

I am also very active in a number of charities and they always have dinners... the money made from the dinner goes to the charity, I buy the tickets for a donation but I can't eat ANY of the food, they can't (well won't) do special meals when they are pumping out 300 of them that night for the function. So I'm not attending them as often, I have a few times but they are often sit down and I sit there and just drink, its uncomfortable for everyone, me and my dinner partners.

My daughter and I use to eat out at least 3 nights a week, well we get sick of the same 2 places (there are very few chain restaurants that work for celiac disease on the Cape, really outback, thats it) so we don't do that as much.

So I really do understand how things change. I'm single so hanging out with friends at the pizza place or tapas bar was a major part of my social time. Now I just hardly ever do it. I did try a lot of the places and go thru the explaining my eating issues thing, but I'd still end up getting glutened and for me, as sick as I get with that, I'm not willing to risk eating a salad in a pizza place, they seem to be covered with flour (the whole darn place is!).

So I'm not whining, I'm Celiac and I accept that but it has change my life and occasionally I am lonely because of this.

Susan

Guest Viola
Guest Viola
Posted

That's a good explanation Susan. It fits a lot of us to a T.

When we are trying to figure out just what it is we are feeling, and see if anyone else is, I don't think we should be catorgized as whiners.

I find that going out just for a drink or a coffee while others are eating, makes them just as uncomfotable as it does us. In fact, if I can't eat anything, my husband refuses to go altogether. He is not comfortable with it, how can we expect our friends to be?

ianm Apprentice
ianm
Posted

I was so relieved to find out what was wrong that I never feel sorry for myself or felt lonely. I had nothing prior to finding out I had celiac disease and have gained everything since then. I can do more now that that the brain fog is gone and I have energy. I wave my celiac disease flag high and proud and if someone has a problem because I won't eat something that is their problem not mine. I miss gluten like a big gaping hole in my head so I don't grieve for it at all. Life is too short to waste.

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laurelfla Enthusiast
laurelfla
Posted

i resent the "whiner" name calling on here, and in fact, reading back over the posts in this thread, i see no whining. i see people who are grieving. i'm still grieving too. "whining" is a very negative label and if we can't come here and say what we feel bad about, where can we?

and just remember, there are so many facets to this disease, and everyone's journey to diagnosis has been different. just because one of us felt so much better after going on the diet and that helps that person accept it does not mean that everyone has had the same experience. i didn't feel that bad beforehand, so it feels like some strange diagnosis that dropped out of the sky, and yes, i feel lonelier and i hate the endless explanations.

i can find the good side to having been diagnosed. in fact, there are many positives about it. but please, just because someone says something negative about Celiac, don't assume that they see no positives and jump on them for complaining.

CaliGirl Newbie
CaliGirl
Posted

This is my experience:

When I was about two years old, I met my best friend. I grew up with her, and I don't think I ever went a single day without being with her. She had lots of names, but most people just called her "Wheat."

Then one day, something life changing happened: I was told I had to move far, far away and never see my freind Wheat again. So I did.

At first I didn't really understand what was going on. And then as I slowly began to realize what life would be like to not ever be with her again, I got mad. Then I complained. Then, I was just so sad. But the more I thought about it, the more I realized that she wasn't a very good friend after all--I just didn't know any better. She would make me feel bad about myself, but it would always be my fault. She would hurt me, but everyone around me would explain it away. And then I saw people I loved who were also friends with Wheat, and I clearly saw the damage she was causing that they would never acknowledge to themselves. And then I didn't miss Wheat as much anymore.

Now I have new friends, friends with names like "Let's join a sport together", "Margaritas with Friends", and "Meet Me at the Coffee Shop". I enjoy life so much more than I ever thought I could, and now I don't miss Wheat at all!

The End.

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