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Need To Vent

kari

By kari
in Coping with Celiac Disease

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kari Apprentice
kari
Posted

argh. i've been trying so hard to live gluten free. i'm not overly paranoid about it though, i want to live my life. but it's seeming more and more like this disease is the most horrible unfair torture out there and i hate living this way. before i knew i had celiac disease, i spent years not wanting to get out of bed. being depressed, irritable, anxious, and feeling like there was a weight the size of one of those cartoon safes on top of my head, keeping me from being able to start at step A, then move on to step B, and progress through the simplest daily activities. school was left unnatended, bills unpaid, etc. etc. etc. as soon as i stopped eating gluten, it was like the weight of the world was lifted off my shoulders and i realized that it wasn't normal to feel the way i had been for so long. i had no idea it was possible or even normal to be able to wake up without 5 or 6 alarm clocks, get out of bed refreshed and happy and go start the day.

then i have these times where i feel like i did before. i'm miserable, moody, depressed, anxious, not to mention i can't seem to leave the bathroom for a minute. i can't stand going to work, my friendly cheerful self is replaced by some ominous beast who doesn't want to move and who loathes human interaction. not very condusive to my occupation as a bartender. and here i am, left wondering, where the heck did the gluten come from this time, why is this happening to me, why does this happen, what am i doing wrong, why is this so unfair? i do most of my cooking myself. plain veggies, rice, fruit, chicken, nothing interesting. but i work 65 hours and week and damn it, sometimes i'm just hungry. i need to eat like the rest of the population does. and then i feel bad for myself for having to go through this, having to check every label, scrub every utensil, worry worry worry. not to mention when i'm going through these glutening phases, the anxiety is overwhelming - how am i going to keep working this many hours a week? how am i going to finish college? how am i going to make up all the missed schoolwork from the years of illness while i was trying to be diagnosed with something? how am i going to deal with the stuednt loan payments while i'm on my leave of absence from school? how am i going to get back into school, fit it in my schedule, find the time, get it done, not look like a loser because i'm just too sick and tired? how am i going to stay healthy?

i know it's temporary, but every time this happens, i remember what life was like before going gluten free and how unbearable it was. but its all so unfair. i haven't knowingly eaten anything wrong. but by the moodiness, fatigue, bloating, and miserableness, that there's gluten in there somewhere. and i realize how much some of it is beyond my control. i was at work the other day and a customer was eating a pizza, it smelled so good, and i wanted some so much i just wanted to cry. i almost did cry. i wanted a bite of pizza more than i think i have ever wanted anything else in this world. the honeydew melon and apple with peanut butter i had brought with me just wasn't cutting it and i wanted to throw a tantrum like a little kid. i wanted that pizza. i didn't have one, i didn't go near it, i did the right thing, but i'm sick anyway, and i don't even know why.

i was at work yesterday and a waitress knocked over a beer which spilled all into the ice we make our drinks with. i panicked, looked at my boss and said 'oh no! what do i do?" he laughed at me, said 'nothing, it's fine. rinse it off with a little water if you want' i said 'what if someone's allergic to beer or something?' he laughed and said 'when have you ever heard of a person being allergic to beer' i said 'i am' and his response was 'really? well it's not the end of the world, it's not like you'd die or anything'

see? it makes me feel like my health is out of my hands. who's to say little spills and things like these don't happen everywhere, in factories, stores, everywhere? where do you cross the line from caution to total paranoia? how do you live a normal healthy life without being terrified of everything you put into your mouth? i've always tried to do that, and the way i feel now is what i get for being that way. i don't know what the slipup was. if it was something i caused, or if it was beyond my control, but either way, i'm paying for it this week with my health and with my sanity. had i known this was going to happen i would have eaten the damn pizza that i wanted so badly. but i didn't. i was good. and it stinks. it just feels so unfair sometimes.

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jambo massive Apprentice
jambo massive
Posted

I agree its so unfair i gave up the celiac diet at 8 and have enjoyed a life of eating anything and everything i wanted which made me happy UNTILL now im just getting better after being in hospital due to eating wheat now i have to change to way i eat which for me is not going to be easy. i went out for a meal last night with my girl friend and all i could eat was a a breat of dry grilled chicken with salad, noot the diet im use to

Teacher1958 Apprentice
Teacher1958
Posted

Hi,

Your first paragraph reminded me so much of myself. I have never heard anyone quite describe it that way- the inability to go from one step to the next step, etc. I thought I was alone in all of that. I had the depression, lack of motivation, IBS, ADD, etc. My house was scandalously dirty (I'm still cleaning it). I made it through four years of college with good grades, but I don't think I could have done it if my parents hadn't paid for it. I can totally understand why it is very hard for you to work so many hours and go to school. I don't know how to help you there.

I find that I am very paranoid about getting "glutenized." I just don't want to feel like that again, even for a short time. The depression was horrible. I used to wish that I would die in my sleep. I obsessed about everything in a dark and guilty way. Ugh. Awful.

I am assuming that you are young by my standards (I'm 49). I think that it would have been worse for me if I had had to follow a special diet and be so careful when I was in college. At my age, I am just very relieved to finally have some answers after 40 years of suffering, although I still get sad sometimes about missing certain foods. There's a pizza place where I used to live, and every now and then, we will go back "home" and order one of their pizzas, which are completely out of this world. I've never tasted anything quite like them. Sometimes I think of all of the foods that I will never be able to eat again, and it gets to me. Most people can occasionally cheat on their diets and be okay. We can't. We have to follow our diet 24/7. I guess I am accepting it, but there are rough moments. I think that we have to find more ways to make ourselves happy, so we don't miss the foods so much.

Somehow you ate some gluten, even though you tried very hard not to. You can try to figure out how it happened, because it may help you next time. If you retrace your steps and still can't come up with anything, then try to let it go. It's not your fault, and it's bound to happen sometimes.

I hope that you start to feel better soon. I know how hideous you're feeling. I'll keep you in my thoughts.

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