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Does It Ever Feel Like Too Much?
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32 posts in this topic

hey guys,

i'm feeling a little down about my health. do any of you ever feel betrayed by your own bodies? i was diagnosed at 14 with polycystic ovarian disease, at 16 with ibs (hahahahahaha), 19 with hashimoto's thyroiditis, 24 with asthma, 27 with hyperinsulinemia, and 29 with celiac (as well as other smaller things-seborrhea, borderline anemia, malabsorptive disorder...etc). i suspect that i also have arthritis in my hips and hands. i'm only 30.

i've become embarrassed to talk with people about my life because my conditions invariably come up. i suppose i'm suffering a little from social anxiety now, because so much of my time is consumed by caring for my various health problems. this is not to say that i'm obsessed, i might be, but i don't think i am. it's just that food issues and energy issues always present themselves. no, i can't eat that. or that. or that. no, sorry. i'm too tired to go to the bar with you, or to the movies...or to a party. why, you ask? oh boy...have you got an hour?

and i'm terrified of the doctor now. not just because most of them suck, but also because i just keep waiting for them to find something else...you know?

and then there's work. i was diagnosed about 8 months ago, and i still have my off days. though i'm much better now, i'm just not the person that they hired, and i'm feeling really badly about it. i don't have the energy i did six years ago, and it shows. and that's without accidental ingestion.

i guess i just want to know that i'm not alone. i want to know that the feelings i'm having are normal, and if not, how can i change? i want to know the feelings that others have about their health problems. and i want to know how they deal with them. any thoughts would be really appreciated. (in reading this, i realize that i didn't quite get across what i wanted to. i think it's beyond me right now, and i don't want to put down more because i don't want to sound more like a whiner than i already do. i hope that because of similar circumstances you'll be able to read between the lines and get at the meat of the thing.)

thanks muchly.

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Beelzebubble, I feel totally betrayed by my body and I don't have all the ailments you do. This sucks! I feel like having celiac disease has ruined the plans I had for my life and, consequently, my husband's. I was diagnosed in November 2003 and I actually have gotten sicker now that I am gluten-free. I have been off work for a couple of months. I know when I go back, I won't be half the person they hired. I was always the one with all the energy - people would mock me I was so energetic. I don't want to go back - I can't understand why this has happened to me, how can I expect them to understand? People have already asked me, "it's just a food intolerance, right?". Well, yes, but I feel like crap.

I feel as though I am a shell of the person I was. I don't think that I can do this for the rest of my life. Why can't they figure this out? They have Viagra for men, and they can't solve a problem with something so basic to life as digestion?!@# If it helps at all, there is reasearch going on. They haven't updated their website yet, but the Celiac Sprue Research Foundataion http://www.celiacsprue.org/ has clinical trials of a gluten breaking enzyme in progress now. They expect preliminary results in the first part of April. Chaitan Khosla, a BioChemist and the person who started the foundataion, has a wife and son with celiac disease. A large part of his mission is to develop a celiac pill, he estimates it will take 5-8 years. This page describes the researc they are doing http://www.celiacsprue.org/drugprograms.html

I hope you feel better!

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No your definately not alone, we all have a bit of a different set of problems and yet we are all going thru the same emotions and struggles in different phases I believe.

Work has always and will always be the place that will make you feel the worst about yourself, school is bad too, but no one is paying you for a service you have a hard time providing there. Yet, what can you do, you have to make a living. In my case, I always felt like a total failure at work, even though I was better at my job in many ways that the healthy people around me who just didn't care. Long story, but finally I couldn't do it anymore and now I am a partner in a business that isn't making any money, but I am happy. And someday, soon I hope, my gamble will pay off. We all have to do what we have to do, and remember, you know your job...it will be much harder for them to hire someone who doesn't than to wait until your health improves now that you are on the right track, right? It won't be long, you'll get your strength back.

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beelzebubble,

I was only diagnosed a little only three weeks ago and am finding that the transition is hard. I alternate daily between being frustrated with my body for doing this to me and for being infutiated at the medical profession for their lack of trying and understanding of the disease. I'm only 18 now, but have had symptoms of celiac disease since I was 4. At that time, I was told that it was my way of getting attention and that the best thing for everyone to do was to treat me like any normal kid and not give in to my constant cries of pain. At thirteen, I was diagnosed with IBS (laughing stock of a 'disease' that is) and finally, a family member alerted me to Celiac.

I hate that it's taken this long for an answer to come around and I also find myself constantly asking "why?". I just don't understand why it seems that the 'bad stuff' always happens to me. I can only hope that the anger and sense of betrayal will go away once I learn how to deal with the disease before I drive everyone insane with complaining that I don't feel well.

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beelzebubble, you are not alone is really hard when mommy is sick and her husband says i do nothing but complain and don't feel good, I would'nt give this to my worst enemy. I don't work but now i have to go out and find a job and am really scared because of having some days i can hardly get out of bed and function. My doctor is no help and most people make you feel like its all in your head. I was told at first i had IBS and just happend to find an article in readers digest that really told me what i had, and i also figured out i had a yeast problem too......

well enough belly aching for tonight, this place is the only place i feel like a sane person when other people know what i'm talking about.

laurie anne

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:unsure: Hi all! Boy can I empathize with what you all are dealing with as far as the frustrations and various physical illnesses & difficulties with all of it. From birth my life has been nothing but doctors, medicines, tests, hospital stays - I have chronic kidney disease and had several major surgeries when I was young and now at age 33, after having three healthy beautiful little girls, not much has changed! I was diagnosed with celiac disease in 2001 - every single blood-related woman on my mom's side of our family has celiac disease (including one of my daughters) - I also have bad asthma, depression, occassional joint problems, along with the kidney disease. Before my daughter was diagnosed with celiac disease I, too, wanted to just give up as my docs discovered that I have refractory sprue and it was too much for me to take. But then my 5 year old daughter is diagnosed and just seeing how easily and quickly she has accepted this new life..... let's just say that any shred of a thought of giving up was erased completely!!! It is a daunting lifestyle to change to, but the benefits are incredible - now don't get me wrong, it doesn't guarantee full health and all, but it's so good to know that we're FINALLY doing something right!! Sometimes it is too much for my husband to take what with the illnesses, and the emotions that occur.... but I have decided that NOTHING will break me and this is no exception. ;)

Hang in there and learn as much as you possibly can - with celiac disease knowledge truly is power, and there are no "wrong questions" - and do your best to stay patient with yourself as this lifestyle takes some time and adjustment.

Jenn W.

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I actually logged on to talk about this very thing. After reading everyone's list of health problems I feel like a big baby. I've never been really really sick, just always annoying little things. I always felt like my friends were rolling their eyes behind my back at all my minor aches and pains, allergies, rashes, migraines and the need to sleep all the time. Also I feel horrible asking for days off for doctor appointments, headaches, and sick days. I think some of my co-workers must think I am a hypochondriac.

I feel almost worse now that I have been (possibly) diagnosed. Every day I make a mistake!!! The last three days in a row I know I have ingested gluten- licked an envelope, tasted pasta I was cooking for the group home I work in, ate some popcorn without thinking. How will I ever feel better if I can't even follow this diet even for one day!! I was so frustrated I came home crying and my boyfriend just doesn't understand. I tried to bake a cake and then realized that the vanilla I used may have gluten in it. Just feeling really overwhelmed and frustrated. I will never rid my enviroment of gluten because I spend half my day at my job with three mentally handicapped women in their home (cooking for them and trying to avoid gluten at the same time is trying) and my family wouldn't be able to adhere to this diet (when I can't even do it!) because they couldn't even eat healthy for themselves, let alone limit things this much. Also I just really want to go out and get a Subway sandwich. I'll eat it on accident anyway, may as well enjoy it right? I won't, I really want to start feeling better.

Sorry for all the whining and I promise this isn't all I will do on this board, just felt like some people are feeling the way that I do. That helps, at least! Hopefully it doesn't feel this way all the time??

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Not to sound redundant but I can totally relate. For example, it is 2:13 am in NY and I have to wake up in 5 hours but I can't sleep b/c I have a terrible rash that is covering my entire body. I was diagnosed about 7 months ago and actually started feeling comfortable with being gluten free this werk. That is, until I broke out in this rash and can't stop scratching. I went to see a dermotologist this morning since I finallly had a day off and could find time for a Drs appointment. They are doing a skin biopsy but we wont get the results back for 7-10 days. I just don't think I can handle this for that long. After so many years of complaining about daily migraines, severe bone and joint pain (days when I crawled across the room b/c it hurt to stand), passing out in the showeer, vomiting for days at a time, etc... I thought it was all behind me. Looks like it isn't and it is just so overwhelming. I was so embarrassed when I broke down crying in the Drs office this morning!

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Ohhhh Erica,

Did you start using something new on your skin, makeup, lotion, shampoo, anything? It could be gluten or it could be chemical (reactions like that happened to me after I had been sick awhile and was weak when I used anything scented especially) Another thing to look out for is detergent or fabric softener and sensativity to those, cleaning products used in the bathtub or shower you may have come into contact with.

Or did you start eating anything new recently? It is hard, I know, but once you know what effects you things will be better. :(

Hope you get some sleep tonight. :)

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I can definitely relate to this business of being overwhelmed by multiple illnesses! I don't even have a celiac diagnosis, which complicates things. The biopsy and the bloodwork were negative, but I do have gastroparesis (paralyzed stomach muscles), so the gastro doc was blaming all my digestive troubles on that. When I suggested in November that I try a gluten free diet, she thought it would be a waste of time. It was especially difficult since I had to combine this with the dietary modifications required for treating the gatroparesis. So in addition to no gluten, I can't have fatty food, fried food, citrus juice, caffeine, carbonation or chocolate. In fact, I was so sick in November the gastro doc wanted me to live on baby food and rice with no red meat, no nuts, no dairy, no whole fruits or vegetables. Ick.

But guess what? After two months of being gluten free (I opted against the baby food diet, ha ha), for the first time in six years, no more stomach pain, diarrhea, nausea or feeling faint after visiting the restroom. I see the gastro doc for a follow-up next week, and even if she maintains I don't have celiac disease, I'm going to stay on gluten free. No way I want to go back to intestinal misery.

The biggest challenge for me is having the energy to cook. In addition to the dietary issues, I have Sjogren's syndrome, fibromyalgia, chronic myofascial pain, hypothyroidism and adenomyosis. I literally spend just about every waking minute outside of my job doing something to maintain my health, and I'm losing the battle to continue working. I'm still in my 30's. More than anything, I miss just throwing on some clothes and grabbing a sandwich on my way out the door to do something fun. I don't want to haul my bottled water, pill minders, eyedrops, Kleenex, lip salve and now my own food everywhere. I'd like to hang with some friends at a bar without worrying about cigarette smoke, whether I'm going to have to leave after 10 minutes due to exhaustion, whether the air conditioning will cause my joints to stiffen up, whether the chairs are too uncomfortable to sit in or whether there's anything on the menu at all that I can eat. I had to attend a funeral last week in North Dakota and thought I would starve to death there....they didn't even have plain yogurt in the grocery store.

So, yes, it definitely feels like too much. But coming to places like this helps a lot, because then I know I'm not a freak of nature. When I see how others cope, it helps me cope. Even when I'm feeling cranky.

Thanks for this topic!

B)

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Yes, I agree sometimes it is all just too-much. I have been gluten free for almost 3 years and counting. And, although I feel much better as far as the intestinal tract goes, my immune system is shot. I just get every bacterial infection that comes my way. It is extremely frustrating. Last year I had a sinus infection that lasted 6 months with ear infectionsl--no hearing for a month, allergies, etc. Then came the fires in San Diego and my asthma kicked up. It took about $600 of allergy meds and antibiotics to heal me up. Then came 2 wonderful months of feeling good and I got that nasty flu and was sick for 2 weeks. A week after healing up from that another sinus infection with both ears involved. Right now I'm feeling better but cannot hear very much and am hoping it will come back---again. Since my initial Celiac crisis, it's been these periodic crises of infections. I am very strict about my diet. Our household is entirely gluten free. I guess all of us just need a shoulder to cry on once in a while. But it does seem like I've been whining a lot lately.

To the 30 something who has all of the problems. Stay gluten free, perhaps your immune system can recover. From all of your symptoms, it seems you do have Celiac. But doctors just cannot figure out how to diagnose it in it's early stage when the gut has not been totally damaged. I'm really glad you decided to go gluten free before that happened. Each of us is different and I'm really hoping you can recover some or most of your health in a few years. Shirley

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I thought I'd chime in, even though I'm the endless optimist.

I also don't have it nearly as bad as other people. My diagnosis isn't confirmed, I also have a testosterone deficiency and may need to investigate whether or not I have a thyroid problem. I have asthma that isn't horrible, but limits some of my activities. I have bad knees that have stopped me from running (I don't want knee replacement surgery when I turn 45!), not to mention a bad back (instability in the SI joint), and vulvar vestibulitis (gynecological pain condition).

While the vestibulitis got me REALLY down for a while (I was worried (albeit needlessly) that it would end my marriage and I would never see any improvement), over all, I pretty much follow the philosophy "Eh... adjust and move on." I know, I know... it's not that easy for everyone. And sometimes, yeah, I just go home and go to sleep after work. But I don't let that stop me from trying to do things. I'm sure that no one here is using it as an excuse, I'm just being a hopeless optimist.

I know my limits, search out alterntives from the get go, and realize that it's not so much that I am different, but that everyone is different. Sure, I get laughed at for sitting on an exercise ball at work, but once people saw that it helped my back and my tailbone (which is also funny), they didn't think twice about it. Sure, I wear skirts all the time, and can't wear pants, but I just find a skirt that I can run around in or plop on the ground (or generally don't have to act quite so lady like in ;-) ). Sure, I can't eat most of the food that people provide, so I keep nuts and dried handy (excellent high-density calories that can be stored well). Sure, I get tired fairly quickly throughout the day, so I make myself get some exercise in the morning (which gives me a _little_ more energy through the day, despite it being REALLY hard to get up out of a warm bed at 6am to dip into a not-so-warm pool!). And sure, sometimes I try to push a little harder than I ought to, but I have my asthma medicine there, and I can slow down, and start over more slowly.

I've had a phsych tell me that my childhood's a good explanation for why I'm so excessively adaptable (and yeah, excessively adaptable isn't necessarily a good thing, all the time), but all I know is for things like the plethora of medical conditions, it's darn useful.

Ok, ok... I get out of here before y'all shot the crazy chipper woman! ;-)

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LisB, didn't end up sleeping but my husband played Trivial Pursuit with me all night so at least we had some fun. I think it might have been from a new soap I tried- the soap had exfoliatin particles that might have been some kind of grain. I couldn't believe how stupid I was to use that soap! Anyway, going to try to soak in Epsom salts tonight. Heard that might help. Hope everyone is feeling well!

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Ya know, I can feel all of ya'lls pain. For the last 5 years or so, I knew that something was wrong. I was completely and totally exhaused ALL the time, and my libido had gone south in a big, big way. I went to several different doctors, who in their infinite wisdom, could tell me that I was anemic. Well, DUUHHHH!!!

:angry: That much I could have told them. Anyway, after many, many moons of thinking that I was losing my mind, fear that my marriage would fail, and finally praying that my husband would leave so that I wouldn't be hurtful to him anymore, I got the diagnosis.

Halloween 2003 I went gluten-free. Yes, I have had accidents, yeah, there are days when I could really tear into a piece of chocolate cake, but all in all, I feel so much better, I'm so much HAPPIER, that the sacrifice is worth it to me.

I think just knowing that I wasn't nuts all those years is a big part of it. It's validation for both myself and my husband who, I'm sure wondered what had happened to the woman that he had married. The really cool thing is that my kids think I have lost my mind now, because I am in such a good mood all the time.

Sorry to be such a chronically happy soul, but maybe this will give a different spin to those who aren't feeling as well right now. ;)

Anyway, that's my 2 cents worth.

Sharon

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I think you are right Sharon..I was diagnosed two weeks ago..and, I'v been gluten-free for 5 days now and, can feel the diference..I am still anemic but, I was told that my anemic will go away and, my cells will get back to normal..I'v also lost my hair, had seizures and, been seriously depressed all my life..One celiac friend told me that my life is now beginning and, I will start to live and, eat healthy..

meat

milk

fish

friuts

veggies

cheese

yogurt

-

-

-

-

-

and, there are much more food we can eat...aside from the gluten-free foods...

:D

in the mean while scientists are searching and, developing a pill to control the deases..So take your days one by one and, appreciate what you have at the moment...

xox

Mario

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Beelzebubble, I'm right there with you. 28 yrs old, diagnosed when I was 2 and you know - never been right. about the time i became a teenage, i rebelled and started eating foods I had never eating before and felt fine up until a few years ago - i really try to watch what i eat but the symptoms/problems i have are neverending. my husband can't seem to understand why i am so tired, etc. He also thinks that I use celiac disease as an excuse to all of my health issues, etc. Although all are celiac disease related. SUCKS is the only word i can use. I have two boys - ages 3 and 4. I'm getting ready to have my 3 yr old tested for celiac disease because I believe he has it. I'm hoping not but......we'll soon see. Hang in there. I'm doing all I can to feel "healthy" again or even 1/2 healthy. Tammy

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On most days I can deal with having Celiac Disease as long as I'm feeling good. But on my bad days I get very frustrated and angry. My mood can turn on a dime depending on how I feel.

I know I went from a strong 170 lb to 130 lbs in 6 months.I look like stick figure-that bugs me. I try to go to the gym but I feel so bad the next 4 days-like I'm getting a flu but never turns into a flu-it's not worth it right now.

I also think about dating. Not sure how that will work.

Oh well. I

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Steve, have you ever thought about finding a date at a Celiac Disease support group? There's got to be some single women out there looking for a great gluten intolerant guy like you. ;)

Mariann :)

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Hi all. :)

I am new to this forum and have been reading your posts with much interest.

I am 43 and was diagnosed with celiac disease just over 2 years ago.

I sort of stumbled into it. I had gone for years for tests because of recurring nausea, but as you all well know, they found nothing.

Then one day, in a tired and dehydrated state, (from sports), I took a penicillin pill that was prescribed by a dentist that morning. I had already been on this prescription weeks before and had just renewed it. 2 hours later, I went into toxic shock at work and was rushed to the hospital. I had nearly no fluid in me and no blood pressure when I got there. My wife was told I probably wouldn't make it.

After getting me thru the crisis, they checked me for everything, including EBOLA. They did the shish-kabob tests (Colonoscopy & Endoscopy) that day with no sedative, (FUN!) and found I had celiac disease.

According to the specialist, I am now in the medical book.

I have followed a Gluten-free diet religiously from day 1. There have been accidents.

After 5 more Endoscopies, my villi is finally showing improvement.

I have no trouble staying on the diet and my wife is a saint.

She gives me so much support and does my baking. I still do the cooking.

I find the worst thing is the anxiety attacks.

I feel that even if I accidently ingest a small amount of gluten, it will kill me.

I know this isn't the case, but the mind works in mysterious ways.

I used to think I was invincible.

My friends are great!

We go out-of-town golfing and at a restaurant they tell the server that if my requests aren't followed to the letter, they will find me flopping on the floor.

It could be worse. But some days you wonder.

Hang in there guys. Good luck to all of you!

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wow. i'm both happy and sad to see that i'm not alone. some days i'm just so frustrated. i see this glazed look appear on people's faces when i tell them that i'm not feeling well. it hurts. that leads me to the place i was on the night i made this post. i felt alone and ill, and unhappy. now, i know i'm not alone, and that's a good thing.

a bit of a history, had anyone taken me seriously as a kid, i would have known about this a long time ago. but, my mom thought i was a hypochondriac. no one could be ill that often. and she wasn't shy about telling everyone that, including doctors. so, when i have to deal with other people in relation to my health, i hear her voice in the back of my mind. and i become anxious and weird (okay, so i'm always weird...weirder then). on a sidenote, i now realize that in addition to being a horrible mother, my mother was also embarrassed that she produced such a sub-standard child, healthwise, and that's why she was so vocal about her views. if she made out like i was just pretending than it took the blame off of her and put it on me. i realized this when i told her of my diagnosis and her response was, "well, you didn't get it from me. there's nothing wrong with my side of the family."

anyway, thank you all for your posts, they've done me (and i imagine anyone in the same boat who reads this-i.e. everyone on this board) a world of good.

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Steve, have you ever thought about finding a date at a Celiac Disease support group? There's got to be some single women out there looking for a great gluten intolerant guy like you. ;)

Mariann :)

I'm going to my first meeting in April. Should be interesting. :D

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Rod,

I too have developed anxiety issues since being diagnosed with celiac disease 3 years ago. I was initially fairly easy going about being gluten-free until I had a reaction from inhaling flour in the kitchen at my daughter's school (making gingerbread houses 1 year ago at Christmas). That was the straw that broke my little osteoporosis back (so to speak). I have become highly suspcious and, at times, somewhat neurotic - repeatedly questioning my friends and my servers (on the rare occasions that I eat out!). I have lost so many days of my life to celiac disease, I seem to live in fear of losing more.

Ironically, my 7 year old celiac disease daughter has become my touchstone. Something I hope she doesn't figure out for a number of years! Her optimism and energy are so inspiring to me. But some days I still pause in the kitchen - and cry - for all this difficulty and bother and work. Thanks for listening.

Laurie

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Thanks all for having this board and sharing. It's good to know we don't have to always do it alone!

:)

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Yes - it is great knowing that there are others out there just like us, going through the same things, etc. Very frustrating that the fact is that if you don't have Celiac Disease, you just can't fully understand it. And others cannot seem to understand what we are going through. Even though I have had it my entire life, diagnosed at 2 - I still struggle on a daily basis. For some reason - I am struggling just as much now - at 28 - as I was when I became a teenage - 13, 14, 15 yrs old? Maybe mid-life crisis early? hee.hee. But seriously, this web site and message board has done wonders for me the past couple of weeks. Support from others going through the same things is the best medicine out there. Thanks!

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wow--i have to add my 2 cents in here---i read these post and i think wow, i'm not crazy and i'm not alone---i was reading one that has been gluten-free for 3 yrs and still picks up every virus that crosses their path--1 yr ago last memorial day my knee started hurting and i couldnt think of a thing i did to it--it started to swell and burn, then it became hot and without insurance and a holiday weekend i had to wait until tues to go to the dr--he drew fluid off it and tested it--told me it was an infection similiar to sinus infection--he said it just settled in a weak part of my body(i had fallen over a 96# black lab the year before and had fluid still on my knee from that)i never had such intense pain in my life--i cried myself to sleep when i could sleep and it wasnt until that same dog rammed me with his nose and popped my knee--the infection all seeped out then--one of my grandson's still softly touches that knee and asks if there is still fire in there :) --i have very teary days and very moody days and days when i should wear a sign that says, "dont even think about it" and i have days when i have joint pain, headaches all the time, and sleepless nights like tonight--we are all in the same boat and i am so happy i found this forum--i find comfort in the fact that i'm not crazy, its all a part of this disease--thank you so much everybody--we are one big extended family--love u all--deb :D

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