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Does It Ever Feel Like Too Much?


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31 replies to this topic

#16 corbintlg

 
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Posted 19 February 2004 - 03:07 PM

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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#17 SteveW

 
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Posted 19 February 2004 - 05:30 PM

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. Iím 34 and hopefully my body will make a good recovery from this. I do feel a lot better than I did 4 months ago.
Steve
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#18 gf4life

 
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Posted 19 February 2004 - 06:36 PM

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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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#19 Rod

 
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Posted 20 February 2004 - 07:27 AM

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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#20 beelzebubble

 
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Posted 20 February 2004 - 09:22 AM

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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#21 SteveW

 
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Posted 21 February 2004 - 06:12 PM

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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#22 mannabbe

 
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Posted 21 February 2004 - 10:37 PM

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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#23 scobeedoo1

 
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Posted 22 February 2004 - 09:37 AM

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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#24 corbintlg

 
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Posted 23 February 2004 - 10:55 AM

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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Tammy

#25 darlindeb25

 
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Posted 14 October 2004 - 12:25 AM

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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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#26 hadafish

 
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Posted 14 October 2004 - 06:38 AM

Thanks for all your stories. This morning it was just what I needed - to know that I am not alone. I have gluten sensitivity, casein sensitivity, fibromyalgia, myofascial pain syndrome, asthma, scoliosis, degenerative disc disease and numerous other spine problems, arthritis and almost constant joint pain knee, hip and both feet in spite of beinfg gluten free for over a year now. However, it is important to add that I have had hardly any migraines, very little heartburn (except for mistakes) and less anxiety, which is not to say that it is not still an issure for me. I thnk I am becoming more eccentric since my diagnosis, or just getting a bit wierd. The only food I can eat is the food I prepare. I am tired a lot of the time and sometimes I am very sad about the loss of my health and mostly of my independence - not working currently. Just taking care of myself and the household is about what I can handle. I do, however, feel very thankful for many things and especially that I know I have gs/cs. The help from this and other similiar boards is huge. I find that I often show the "good sport" syndrome. A friend will ask how I am doing and even though I have a lot of pain I say "fine". Later, I wonder why my friend does not understand the depth of my difficulties and then I remember I have not revealed the truth. I think it is hard to determine which is better, to say I am fine on the hope that it will become real or I am in pain so that friends will understand. Mostly, I don't want people to know the extent of my problems and that is what is so great about being able to come here. Thanks to all. Jan
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#27 plantime

 
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Posted 14 October 2004 - 08:00 AM

I needed this today, too. I get hurt when my "friends" make Sunday dinner dates at Pizza Hut, then tell me that I'm not being sociable when I don't go. I get angry when I read the soup labels in the grocery store, they have chicken, wheat, or rice in them, none of which I can have. I struggle to eat my burger wrapped in wax paper while whoever I'm having lunch with is complaining about the buns being stale or hard. Right now, all I want is a bowl of cornflakes. All of the corn flakes I have found use malt flavoring, so I can't eat them. I don't mind when my family and friends eat bread and pasta, it does not bother me. It is the plain, "grown-up" cereals that I miss. And getting people to understand is next to impossible, unless they have the same problem.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#28 plantime

 
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Posted 14 October 2004 - 08:08 AM

Food isn't my only issue. When I was 12, I was diagnosed via blood test and xrays with Rheumatoid arthritis. Now I am 40, and the Rheumatoid factor was not in my blood, but the osteoarthritis factor was. It leads me to believe that I have both, since I do have symptoms of both. My doctor says no, it is impossible to have both. Is it really? The treatments are not exactly the same, except for pain management. One is an autoimmune problem, the other is a wear-and-tear problem. One is treated with immune suppressants, the other with anti-inflammatory stuff. If I use chondroitin and glucosamine, one joint starts feeling better, but others become so badly inflamed it is unreal. Now I have been formally diagnosed with celiac disease, which at least explains the pain in my gut. With all of the food allergies that I have, and all of this other, I feel like my body hates me. I do the best I can do to take care of myself, and this is what I get in return? Aches, pains, swollen joints, can't eat what I want? Sometimes I wonder why I bother with sticking to the gluten-free diet. Give me real Oreos and Cornflakes!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#29 tarnalberry

 
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Posted 14 October 2004 - 08:18 AM

There are a few makers of corn flakes that are gluten-free - check out the health food stores. In fact, I like Nature's Path corn flakes better than the standard Kellogs. There's another company (I forget which one, but I saw them at Wild Oats) that makes gluten-free corn flakes as well. And Erewon's Rice Crisps with freeze dried berries are good too (not too sweet... I hate really sweet cereals).
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#30 plantime

 
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Posted 14 October 2004 - 08:24 AM

Thank you, Tiffany! I will keep looking until I find them! Maybe if I ask at my favorite whole foods store, they could order some in. My husband asked me when I was going to my store again, and would I please go on his day off, he would like to see my store. It makes it easier to handle, knowing that my hubby isn't mad at me for driving 40 miles one way once a month just to buy $20 of groceries!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25




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