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How Do You Stay "sane"?

Scared to death

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17 replies to this topic

#1 tspiggy

 
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Posted 11 November 2012 - 06:12 AM

I'm 49, newly diagnosed and started the diet this weekend. Eliminating gluten from my diet (at home, anyway) isn't going to be as difficult as I thought because it turns out that about 90% of what I eat is already gluten-free and there are gluten-free versions of the remaining 10%. I've eaten pretty healthy all my life so I can deal with the dietary restriction.

But the emotional aspect of the disease is affecting me. First of all, I was shocked to learn I have celiac disease, as I don't know anyone in my family who has it. If it came from one or both of my parents then their undiagnosed (and therefore, untreated) celiac has had no affect on either their health or longevity. My father is 92 and my mother is 86 and they're both in remarkable health. My brother, who's 63, doesn't appear to have the disease. Lucky me; I crapped out in the game of genetic roulette.

Anyway, my quality of life and emotional well-being are becoming compromised. Taking the necessary precautions to eat safely all seem to require a level of paranoia that can't possibly be good for my mental health. I made the mistake of reading all the medical websites that describe the potential complications of untreated celiac disease, and I'm terrified of the consequences of accidentally ingesting gluten. I will never knowingly cheat on the diet but accidents are inevitable. I'm lucky to be a “silent” celiac who doesn't have an extreme reaction to gluten but I'll know the damage is on the inside and increases the risks of worse things happening to me down the road.

I don't want to adopt a victim mentality or define myself by my disease. By all means I have to be careful when I eat but otherwise want to live a normal, healthy life that includes (eventually) dining out, socializing and traveling. I'm hoping that in time taking the necessary precautions becomes second-nature and I'll go about my life as usual. But right now my condition and its potential future health implications are all I can think of. I feel as if I'm walking around with a sword over my head.

So how do you stay sane and not let celiac disease adversely affect your quality of life?
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#2 kareng

 
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Posted 11 November 2012 - 07:00 AM

addressing the genetic issues: about 30% of the population has the genes for Celiac. Only about 1% of us "lucky" ones have the gene activated.

Accidental, occasional, glutening: It will happen. That doesn't mean that it is "destrying" you. If you have a postive blood test, you get it re-tested in 6 months. It should be way down or megative. Then you get tested every year, to see if you are still managing gluten-free.

2nd nature- You will get to the point of not even thinking about it at home. If you still have gluten in your house for a gluten eater, put some "rules" or procedures in place to keep you safe from thier crumbs. Things like Leopard print duct tape on the top of your PB jar and butter tub, a red toaster for gluten-free only,gluten bread & toaster on the otherside of the kitchen from the gluten-free toaster, etc.

Eating out: That is a little harder. There are some places you just can never eat. They will not be able to get you something gluten-free. There are lots of places you can eat - PF Changs, Pei WEi, Outback Steakhouse, most high end restaruants, etc.

Traveling: We have several threads with tips for traveling. One " Commandment of Celiac" is to always have something with you to eat. You don't want to be stuck in an airport or even at the MAll with nothing to eat. A baggie of nuts or a Lara/Kind bar should always be in your purse and /or car.
You will learn what you can eat from a convience store/airpost gift shop as you go - nuts, most candy, most chips, etc.

Always read the labels. In packaged food, gluten will be clearly labelled as wheat, barley, barley malt, etc.

Read around on here and see what others are doing. It gets easier about 6 weeks in.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#3 a1956chill

 
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Posted 11 November 2012 - 07:56 AM

Yep accidental glutening happen,, you learn how to prevent it as much as humanly possable . And if it happens you deal with it and learn from it .

Yep, it does become 2nd nature at home and out.

Eating out ,, I dont do it,, for me it is because of my soy issues not gluten issues. If I had to deal with JUST gluten issues I would be in heaven ^_^

Always, Always, Always have something with you to eat ,, even if you dont plan on being away from home more than 5 mins.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It does get ( not sure I would use the word easier but it will do) easier(?) the further in you get.

But sometimes it does gets tougher first, the journey we are on ( as celiacs) is a tough one but you are in good company.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#4 Adalaide

 
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Posted 11 November 2012 - 08:20 AM

They're both right. Sure, I'm probably paranoid. I share my kitchen with gluten eaters. My paranoia extends only to kitchen cleanliness before I begin cooking. Life is what it is, I have almost certainly lived with this disease my entire life and therefore was undiagnosed for just over 30 years. I'm still here. There is nothing I can do about those lost 30 years and I'll be damned if I let this disease steal the remainder of my life from me by keeping me cooped up. I feel more healthy than I ever have in my life, and so I live it. So should you. It is good that you are educated about possible complications, don't let them haunt you.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#5 SMDBill

 
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Posted 11 November 2012 - 09:08 AM

To be honest, I'm a couple months into being gluten-free as a result of celiac and it is rather consuming. I think about it more than is probably healthy, but it is getting better. I don't talk about it all the time like I did at first, mostly when I found new information that was important, but I still think about it a great deal. Hopefully as you adapt and get more comfortable with the situation and know the things that are safe in most places, the thoughts will become fleeting rather than consuming. It really is tough and I understand how you feel. I'm on that same road and hoping it continues to diminish.
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#6 Celiac Mindwarp

 
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Posted 11 November 2012 - 10:08 AM

I'm nearly 3 months in and did my first trip away and first coffee shop with (gluten-free) cake this week - and survived. I even ate before I went out for dinner and had a cug of tea at the restaurant, like folks here said. To be honest I thought it sounded awful, but do you know what? I had a great time. I know I will eventually eat out too, but baby steps.

We dont mind how much you talk about here ;)

Welcome in, keep visiting.

Oh, and I couldn't possibly comment on the sanity of the others on the forum :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 IrishHeart

 
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Posted 11 November 2012 - 11:38 AM

Dealing with celiac does not "require" any paranoia, hon. :)(in fact, there is no need for paranoia at all)
It requires caution and common sense. Arm yourself with a working knowledge of the disease, read some solid information about cross contamination and how to avoid it----and live your life.

This is one of those situations where the only thing you have to fear is fear itself. Will you get glutened from time to time?
YUP. Even people like me who conduct the Spanish Inquisition before I eat at a restaurant gets hit once and a while. It's a part of our life,
I am afraid. So it makes me sick for a few days, I have some symptoms kick back in and I bitch about it a little to everyone, then, I get past it. It does not stop me from living my life. I lost enough time before my DX and I am not losing anymore.

In addition to the good advice you have already been given, I wish to add that most celiacs who are diagnosed and follow a gluten free diet, get enough exercise and live happily without stress as is humanly possible (almost said that without laughing...)
do not experience any higher frequency of lymphoma or any other disease after a few years gluten-free.

In other words, we're on the same level playing field as anyone else.

These AI diseases are "associated with" UNdiagnosed and UNtreated celiac disease
It does not make them "automatic", okay?

In any case, there is no point in fretting over it IN ADVANCE, right? Nothing good comes from worrying about things that may never happen. I do not worry about what may happen 5 years from now. That takes away from my enjoyment of today.

Stress causes pro-infammatory cytokines....we do not need those.. Plus, it gives us wrinkles, which are yucky and make us look old.

Truth be told, when I was very ill Before DX? I looked like hell. I looked 10 years older than I am.
Now, I look 10 years younger. I am like that dude who ages in reverse...call me " Irish Buttons."

You sound like a level-headed person. You are wise not to let this thing define you. Don't let it CONFINE you either.Physically or mentally.

So, take the sword hanging over your head and put it in your hand...there. Now, go, live, enjoy.

To answer your question---How do I stay sane?
Humor, baby. Humor.

Welcome to the forum.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 AmyVC

 
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Posted 11 November 2012 - 11:41 AM

I've been living gluten-free for a ,onto now, and I feel like its consuming me, too. My every thought. I look at every food and analyze every bite that goes into my mouth. I am so glad I found this site. It's so good to know I am not going crazy. I'm not, right?
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#9 Adalaide

 
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Posted 11 November 2012 - 11:59 AM

Dealing with celiac does not "require" any paranoia, hon. :)(in fact, there is no need for paranoia at all)


Just because you aren't paranoid, doesn't mean they aren't watching you. Just sayin' is all.

Ok, seriously though. She's right. The paranoia is optional. Mine is only because I share a kitchen with my mother in law who will not stop TOUCHING MY STUFF OMG!!! Okay, I'm done. If it weren't for that, if I shared a kitchen with anyone else who even understand what the heck gluten even is, I would check my paranoia at the door and settle for my standard kitchen OCD. :lol:

Sometimes you may think to yourself "do I think about this too much?" I always answer that with a no. Because I think about it as much as I eat. And that is required for our health. At the beginning it may feel a little all consuming, but for me that helped me get a handle on it and remember things. Now it's more of a background thing. (Like, background browser while I play video games. :P )
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#10 tspiggy

 
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Posted 12 November 2012 - 03:55 AM

Thank you, everyone, for your replies. They were so reassuring that I cried a river (of relief) when I read them.

I fell into a deep depression after receiving my DX. At first I was relieved to know that there was indeed a medical reason for why I felt so miserable in the past year. I'd gotten sick of being told I was going through a bad menopause or it was all in my head. A doctor I saw two months before my DX brushed it off as my nerves...I had been suffering from extreme health anxiety since June 2011, which started seemingly overnight and was very unlike me. I was so paralyzed with fear about what could possibly be wrong with me that I didn't even push to be tested. Not that I had any idea what to be tested for, and certainly celiac never even crossed my mind.

When I started reading about the disease after my DX and what I had to do to avoid cross-contamination I felt so overwhelmed and alone. It's one thing to read postings from so many other people online and know logically that I'm certainly not alone. But when I'm the only person I know who has the disease it's entirely different. I'm grateful to my daughter, who has agreed to go gluten free with me, and to my husband who will eat whatever I prepare at home so that I won't have to make two separate meals. He still doesn't quite understand the implications of accidental glutening and insists that I'll be fine if we go out to eat, but has agreed to follow my lead. I'm only just starting out my new lifestyle and am nowhere near ready to eat out. As it is I'm dreading the three holiday parties that are coming up in December but I'll deal with them.

IrishHeart answered the question that I was afraid to ask: do celiacs who adhere strictly to the gluten free diet and take care of themselves have a shorter life span as a result of their disease? It's reassuring to know that not necessarily. That knowledge alone eases my fears greatly and I'm grateful for your response.

Thanks again for being the voices of reason in this cloud of uncertainty and fear. I still have some mourning to do for my old lifestyle but feel empowered by the thought of taking that sword from over my head and putting it in my hand. Great image...one I'll refer to in my weak moments.
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#11 Adalaide

 
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Posted 12 November 2012 - 06:17 AM

Thanks again for being the voices of reason in this cloud of uncertainty and fear. I still have some mourning to do for my old lifestyle but feel empowered by the thought of taking that sword from over my head and putting it in my hand. Great image...one I'll refer to in my weak moments.


Take all the time you need for that. And if 10 months in you have a perfect handle on everything and IHOP puts a commercial on TV for red velvet waffles (red velvet is my favorite thing in the world after giraffes) and suddenly you're mad at the world and crying again, that's okay. Every once in a while it'll creep up on me, I just get it out all at once and move on. I think we've all cried in grocery stores and panicked when we're hungry and miles from home. Let the world think you're crazy, we all know you are every bit as normal as the rest of us. Don't sweat the things you think make you weird. One or more of us have all been there, come, vent, share happy moments, whatever you need. Staying sane those first months takes practice. Then before you know it you're 11 months in and off your rocker... I mean an old hat like me. :P
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#12 IrishHeart

 
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Posted 12 November 2012 - 06:55 AM

Addy is right. This is an up and down healing path, but you will find your rhythm and it will become the "new normal"
For example, I never say gluten-free anymore. It's just food.

if it makes you feel better, many of us were told the "it's menopause" or "it's all in your head" or "there's nothing wrong with you"
malarkey too.

I had inexplicable anxiety and raging insomnia when I was quite ill before DX. I was wired for sound. Yet, I have never been shy or anxious in my life, so it made no sense to me at all.

You will be okay. Your transition will be easier because --as you say--you have a healthy diet already.
Once you start to heal and the depression lifts and the anxiety vanishes, you will see that the malabsorption caused all this
havoc.

Please make sure your doctor follows up with you. You should have your vitamin levels checked as these also contribute to
the anxiety and fatigue. B-12, FOLATE, D and also, have your thyroid checked, too. if you are taking any meds for anxiety or depression, you may find you do not need them and may be able to taper off. Don't stop them abruptly.

My advice regarding the upcoming holidays? Eat before you go somewhere, brings snacks with you everywhere and/or have people over to your house! It's easier when I am the hostess (plus, I like feeding everyone!).
There are many suggestions for holiday treats on here. It will take off some of the added stress of worrying about what to eat
and how to explain why you aren't indulging in Aunt Millie's pie.

We're here for you.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 tspiggy

 
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Posted 12 November 2012 - 09:37 AM

Just read Addy's reply about crying in the grocery store. That was me this morning. My husband is off for Veteran's Day and after dropping our daughter off in school he took me to Shop Rite, headed straight for the gluten-free aisle and told me to pick out anything and everything I wanted. After reeling from sticker shock (man, that stuff is expensive!) I chose a few items that I knew he would also eat, then thew myself a pity party while standing on line waiting to pay. It suddenly occurred to me that our grocery bill was going to increase because of me and I felt as if I was being a burden on my family (BTW, I'm hoping the mood swings are all celiac-related and will eventually go away). When I expressed my feelings to my husband in the car on the way home, he held my hand and said if it was for my health then he didn't care how much it cost. And of course I cried again with relief and gratitude. So glad I married a good guy.

This will take time but I'm tired of crying so much. :)
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#14 cavernio

 
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Posted 12 November 2012 - 11:16 AM

"I'm lucky to be a “silent” celiac who doesn't have an extreme reaction to gluten but I'll know the damage is on the inside and increases the risks of worse things happening to me down the road."

Huh, I always thought silent celiac meant no symptoms, not just not immediate reaction to gluten. But reading your next post, you did have issues that eventually led to you getting tested. I keep myself gluten free because I don't want to have all those other symptoms. Being gluten free is positively impacting my quality of life, not the other way around. I don't have to remind myself to not eat gluten.

I dunno about the paranoia thing, but I still feel like I have to be mentally unhealthy levels of careful and anal. But that's not my fault, that's just what you have to do when everyone else's food is basically poison.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#15 notme!

 
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Posted 12 November 2012 - 12:16 PM

sweetie, almost all of us cried in the grocery store in the very beginning - it's true!! i ran out without even buying a thing the first time i attempted to wrap my head around it. one day at a time. sounds like you are blessed with a good, supportive guy. and you are among friends on this forum. they are absolute angels and i would have never done so well (IT'S HARD!!) without all of them (IT GETS 'EASIER') be encouraged :)
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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