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Sick Of Being So Different

GFMochi

By GFMochi
in Coping with Celiac Disease

Recommended Posts

Loey Rising Star
Loey
Posted

Well, there are issues.. I don't think it was malicious.. they just don't get it on so many levels. I am still trying, after three years, to cope with the fact that I have to guard my own little safe corner.. walked in to the kitchen last night as I was cooking up some burgers and picked up the spatula without checking or thinking.. had been used for their dinner and was dangerously cross contaminated. Seems like the wife got upset with me. I seem to be the one causing all the inconvenience. No wonder I still have damage consistent with celiac after two strict years of rigorously gluten free. Could very well be why I am out here during dinner while they are all having a good time around the dinner table. Oh well. Had to leave because the pasta boiling was making me feel nauseated.

I wish your family knew how much you would like to be able to eat whatever you wanted and not be worried about CC. They don't realize how lucky they are to not have to deal with the food issues that we do. Went to a funeral recently and we stayed overnight at my husband's cousin's house. He didn't quite get the restrictions but left my food alone and let me heat it myself. At the luncheon after the funeral they had a special salad for me (it was a buffet but I was prepared with more little containers).

This time of year is particularly hard on all of us. We're lucky to have our online community. We just moved to a new state and one of my husband's friends at work has IBS (he referred me to a new GI because I am NOT happy with my current one) so when I cook us all dinner next weekend (they're coming over and I plan on picking his brain) it will be gluten and acid free.

Sending healing hugs with holiday wishes,

Loey

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Gutsy Girl Rookie
Gutsy Girl
Posted

Who else is sick of having to deal w celiacs? I hate having to be so careful w my food, having to make my own food to bring to parties. I hate it!! No one else in my family has this, they don't understand how bad it sucks to be so different. They keep telling me that I'm over reacting, it's not that bad to have this allergy, but they don't have it, it is not going to personally affect them! If they are hungry, they can grab anything.

I am so frustrated. I have 3 gatherings to go to next week, all surrounding food. I don't know how I am going to handle it. I was just curious how everyone else deals with it.

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Gutsy Girl Rookie
Gutsy Girl
Posted

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

Oh, now that's no fun! Sorry!

kareng Grand Master
kareng
Posted

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Glad you have a sense of humor about it! When my boys were little, your chair would have been the hit of the party for them! The oldest is about to go to college for mechanical engineering and the younger loves to build things, too. Because people have always been nice to show him things like thier chairs and prosthetics, he has an interest in designing and building adaptive devices.

Somwtimes, I'm eating my food and its sooo much better than the rubber chicken everyone else is eating. And they can see that! :)

Loey Rising Star
Loey
Posted

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Just remember we're all here for you and you're never alone. Feel free to PM me anytime to vent. You've got a lot on your plate (no pun intended). If your biological family doesn't get it your adopted forum one does!!!!

Healing hugs,

Loey

Skylark Collaborator
Skylark
Posted

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

I went through some personality changes as I recovered and some of my friendships shifted around. I also had a broken engagement when the fellow realized how much I had changed. It turned out to be for the best. I started new hobbies and made some new friends that way. I also throw my own parties, so that I know I have something safe to eat.

To rebuild, get out of the house. Take up a sport, go to dance classes, take a painting class, volunteer for charity, whatever sounds appealing and involves a few other people you can meet.

BethM55 Enthusiast
BethM55
Posted

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

I have no idea what to say, other than {{{hugs}}} and a belated happy birthday! I hope you treated yourself to a gluten free cake. Shame on your family for being so insensitive.

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Loey Rising Star
Loey
Posted

I went through some personality changes as I recovered and some of my friendships shifted around. I also had a broken engagement when the fellow realized how much I had changed. It turned out to be for the best. I started new hobbies and made some new friends that way. I also throw my own parties, so that I know I have something safe to eat.

To rebuild, get out of the house. Take up a sport, go to dance classes, take a painting class, volunteer for charity, whatever sounds appealing and involves a few other people you can meet.

Coincidently I have done what you suggested and started taking painting classes. I also tutor a dyslexic child for free one day a week. I'm too sick to work but for at least two days a week I feel normal.

Wishing everyone a HEALTHY and happy gluten-free holiday,

Loey biggrin.gifbiggrin.gif

  • 3 months later...
kellynolan82 Explorer
kellynolan82
Posted

My eyes just cannot avoid the sight of wheaten bread and cakes. They gloom at me, they stare at me, they watch me very closely, they can't wait for me to give in and have their opportunity to attack my insides. That decadent looking piece of cake; should I eat it or should I not? If I do... It will eat ME! Seriously, I can tell when foods are DEFINITELY NOT gluten free and there is always a "HATE" expression engrained on the texture of wheaten cakes and breads. It's a temptation we all need to overcome. And a self-absorption I need to avoid.

Socially, I just try not to bring up the subject if it doesn't come up. I tend to not volunteer unless I'm asked. Too many variables here and there. :rolleyes:

That being said, don't get me wrong, I'm always more than happy to talk about it ANY TIME with ANY ONE if it comes up. :D

etta694 Explorer
etta694
Posted

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

I also have laid low and, I think because of recovery, have been too exhausted to invest in relationships that are wearing. It has gotten somewhat better especially as the diet kicks in. But, I hear ya....

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

That sucks! :( Yes, and I hope you did treat yourself.. you know, that new purse.. :P

Marilyn R Community Regular
Marilyn R
Posted

I think depression is part of celiac disease, and with that comes self pity and fatigue and all sorts of self-defeating attitudes.

The one thing I use as a mantra is that I have a disease. A disease that is controlled by what I eat. How lucky are we that we can eat so many foods and not pay for really expensive treatments or drugs to feel better? How lucky are we that we found out before it turned into full blown MS, Lupus, or other autoimmune diseases?

It's perfectly normal to feel bad about having to cope with this disease. But we're still lucky. We found out. :D

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    • trents
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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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