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gluten-free, Df, And Everything Else-f..ruining My Life


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#1 jasonD2

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Posted 28 September 2008 - 03:55 PM

I have multiple food intolerances and sensitivities and am really concerned about this affecting my life. for the past few years its been hell trying to adapt but i'm doing the best I can. My biggest concern is how I will handle the food issues when (and if) I get involved in a serious relationship...meeting her friends and family, brunches, dinners at her parents house, traveling...how am I supposed to enjoy it all if I'm so restricted? As it stands I have no interest in traveling anymore because i have to constantly watch what I eat...its exhausting and takes the fun away from everything. Restaurants are somewhat manageable but what if i get invited to a dinner party and I have 0 control over the ingredients? I will have to pick apart everything and in the process will come off as neurotic and weird. Ive thought about this long and hard and right now i'm trying to avoid all these situations that would cause me anxiety..havent been dating, when i do get close to someone I usually cut it off once its starts to get serious. i have been invited on various trips abroad with my friends and i passed because i dont wanna deal with being in a strange counrty where i dont know whats in the food & cant speak the language. How the hell am I supposed to live?
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Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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#2 ShayFL

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Posted 28 September 2008 - 04:08 PM

I hear you Jason. And I sympathize completely. Life constantly presents us with challenges that we have to face and work through.

I suffered horrible vertigo for many years and I became a recluse because of it. It was my excuse for not doing anything. For not living fully. But I got tired of being a prisoner to my disease and my own home. I wanted to live!! So I forced myself to get out. To do things. Even if they were uncomfortable. First I joined a gym. The first 2 weeks I just poked around observing things. Then the guy that ran the place noticed me. He invited me to a kickboxing class. A kickboxing class!! Geez...with my vertigo. I told him about my unsteadiness. But he said come anyway. So I did. I got there early and talked to a few other women. I told them about my vertigo. I fell on my ass at least 10 times during that hour. In front of 20 other people. I fell. No one laughed. No one. Afterwards, several people came up to me and said they admired me. And I realized that I was proud of myself too. So I kept going. I got better and better. I stopped falling. I got good at it. A few months in, I was so good at that the instructor asked if I would teach the class for her one day when she would need to be absent. Crazy. But I did it. Everyone loved me and the class I taught. So I got ACE certified to be an instructor and started teaching my own classes. I then worked toward a Phd in Holistic Nutrition. THESE WERE SOME OF THE MOST REWARDING THINGS I HAVE EVER DONE. I would not have gotten to enjoy my life if I had not taken a risk.

You can never get satisfaction from life if you continue to play the "what if" game. Real joy comes from taking risks and finding that you are a lot more wonderful than you think you are. :)

I met my DH online 7 years ago. I took a risk. It paid off. Now, I dated a lot of toads along the way. Not everyone that answered my ad was normal. Uncomfortable. Yes. But the end result was that I found someone that I love deeply and fully. Worth the risk and the pain in the ass? You bet!

You could try online dating and just say upfront that you have food intolerances. You might just be surprised that there is a woman out there that is perfect for you as she shares food intolerances as well. And her family is already familiar with it because of her and you will fit right in. But you will NEVER know unless you get out there. Force yourself. Refuse to be a prisoner to your food issues. Allow yourself some discomfort to get to the prize.
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#3 mymagicalchild

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Posted 28 September 2008 - 04:28 PM

How the hell am I supposed to live?


Sounds like you perceive your food sensitivities to be an unscalable wall that separates you from any of the normal-life
experiences that bring humans joy and all the other goodies.

You've found a great place to get some ideas on how to scale that wall and probably even say bye-bye to it.

After reading your topic, the FIRST thing that popped into my mind is Dr. Laura's theme song "You've Got a New Attitude." Because performing some minor attitude shifts could very well lead to major breakthroughs in your life.

That made me think: "Your food sensitivies are your enemy" is what I hear in your words. What about if you could shift that to a new attitude: "Your food sensitivies are your best friend and will save your life. Accept them. Embrace them. And use them to discover your own healthy diet."

The last thing I thought is: THIS IS A PERSON WHO SHOULD BECOME A RENOWNED CHEF. I say that because you'll have to learn to cook for yourself. Why not make yourself the best damm cook around?

Good luck to you, Jason! I'll be reading the wisdom written to you on this topic.

PS: There's a life partner out there for you who will support and love you through anything and everything: Once you are prepared to recognize that gift! My own life experience is: When I can give the gift to myself, I'll find another who can do the same.
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#4 yolo

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Posted 28 September 2008 - 04:59 PM

I sympathize-- it is hard to socialize with this condition and it is very easy to come off as being neurotic to the uninformed. It can be at times maddening. I have had a hard time with some members of my family for instance even though most of them also have this condition and should know better. You just have to develop a tough skin and either take your food with you, or go to a restaurant that has gluten-free food or eat ahead of time. I often bring a main dish that everyone else really loves to eat too -- and just make sure I take a large helping first in order to avoid CC.

About the online dating: I agree this is a good idea too. I tried it recently and found someone who also has celiac disease -- by putting it right out there that I have celiac disease/gluten intolerance (although he didn't--he was able to find me), plus we have many other compatible interests. Apparently having celiac disease it isn't as unusual as it used to appear. They say one in 133 Americans has celiac disease and who knows how many others have to restrict gluten as well as other allergens?

If someone you date doesn't try to be understanding and accomodating about this condition, of course stop dating them...This happened to me by the way. I was dating someone last Fall and kept getting ill afterwards. It was while I was going off all trace glutens. After finally getting D several times and then ill with a bacterial condition it finally occurred to me what was happening. Unfortunately the guy thought I was crazy and wouldn't change. It really was hard to go through since we were old friends and shared many interests but my health had to come first.

As far as Europe goes, its my understanding they are way ahead of us about knowing about celiac disease. By all reports, restaurants and stores have gluten-free food all over the place--you just have to ask. If you are extremely sensitive (like me) you might have to go to a little extra trouble, however I am pretty certain it can be done. They have known about celiac disease in Europe since 1950 after all--that is everybody. In Italy for instance all 6 year olds are checked out for possible celiac disease. I am pretty certain that there must be some kind of network of celiac disease Americans at least who go overseas who have figured out a good protocol. If not, why not start one here on celiac.com?

I hear too that in a couple of years or so some kind of pill will be on the market that counteracts CC problems--like for when you go out to eat at a friend's or at a restaurant. When that happens much of the bite of being a celiac will be gone. Meanwhile using probiotics and bromelain/papain and a variety of other remedies like taking baking soda in water help with the CC. However that is another story...

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#5 missy'smom

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Posted 28 September 2008 - 05:20 PM

I often take my own meals to places and events that most people wouldn't dream of doing. I've brought them into restaurants when I've dined with my family and was away from home. I told the waitress that I had multiple food allergies and since others were ordering from the menu, I didn't feel bad. I also have brought them into restaurants where I dined with a group and the cuisine as well as the staff and management was foreign and I knew I couldn't communicate my needs or change where we ate. I've brought meals in tupperware to catered holiday meals and gotten looks and didn't explain, again a situation where I couldn't communicate with the caterer or make special requests. I find that being not understood is much less stressful than not having safe food. If I have safe food I can just relax and enjoy my meal and those I'm with, even if some don't understand. I often don't explain unless I'm asked.

I successfully traveled overseas and stayed gluten-free but I did my homework and planned way in advance. It is possible and you shouldn't cross it off completely.
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Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#6 mymagicalchild

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Posted 28 September 2008 - 05:32 PM

I hear too that in a couple of years or so some kind of pill will be on the market that counteracts CC problems--like for when you go out to eat at a friend's or at a restaurant. When that happens much of the bite of being a celiac will be gone.

Bea

This REALLY sounds like wishful thinking to me. And I definitely try to avoid that.
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#7 happygirl

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Posted 28 September 2008 - 05:47 PM

(slight diversion from Jason's original post)

regarding a 'pill' for potential cross contamination - there is one under clinical trials. http://www.albathera.....n Leffler.pdf
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#8 mushroom

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Posted 28 September 2008 - 05:48 PM

WHAT mymagicalchild SAID:

"That made me think: "Your food sensitivies are your enemy" is what I hear in your words. What about if you could shift that to a new attitude: "Your food sensitivies are your best friend and will save your life. Accept them. Embrace them. And use them to discover your own healthy diet." :

I have been there, and I do sympathize. Used all my physical problems as an excuse to withdraw from life and not have to expose myself to ridicule and and whatever... But really, it just makes life harder, not easier, and makes you miserable as well. You have to adjust the attitude that your body is your enemy, turn it into your friend, listen to it and let it teach you a new way of living, which may be different from your old way, but may be just as rewarding or more so.

It will take time and practice but it will be worth it, I promise you. Your future awaits you.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#9 UR Groovy

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Posted 29 September 2008 - 07:48 AM

Hi There Jason,

I think I've pissed you off before, and I'm sorry for that. I keep staying away from your posts because I don't want to piss you off - my goal is to send you one of these: :) I just have to tell you this, because maybe it'll help a little. I hope so ... or maybe it'll help someone else - I don't know.

One of the things that most of us have in common here is that we have had to adjust our lifestyles and see life through a new set of eyes. For some, the transition has been fairly easy - but that's not the way it usually goes. Typically, we are fearful about how we're perceived by others - we're disturbed by the insensitivity of others who don't understand what it's like for us - we feel that this whole thing is unjust, and others should understand that ... many of us have been very ill and paid a lot of money.

There may be a difference between who it's easy for and who it's not. I struggled for about 6-8 months with some of these issues - the social eating thing was huge, so I'll address only that. I don't know about others and how they overcame it, but I would be interested to know.

I'm gonna just throw this out there - I don't know what you're like in your daily life, so you may already have a grip on this ... I don't know, but ...

I dislike the phrase 'aha moment', but I'm going to use it anyway. At some point, probably my biggest aha moment happened. I realized that I don't need to defend this to anyone. These are the facts: When I eat out or in a social situation, I need to adjust my expectations of what I can and can't eat. I'm not asking anyone else to adjust anything - except maybe the restaurant we choose. Everybody else who's watching and possibly judging me can deal with it - it's my problem, not theirs, so go judge something or somebody else. These are the facts: I cannot eat a bunch of crap that's going to make me sick. Would you eat stuff that makes you sick? Oh, sure, I could take the risk, but the cost is too much, so deal with it. Once I stopped defending my position & began stating it as fact, most of the judgements stopped, and life became a bit easier (BTW, it's a confident fact - there's no apology or defensive tone involved). I began to accept this fact in my life and adjust accordingly. Now, I rarely offend anyone, and I pretty much never get 'the look'. Mostly, people are interested in this fact - the interest wanes, the subject goes away, and is accepted as fact. Sometimes, it happens - the look -, but I don't really care. I cannot eat it, or take the risk.

It took a high level of acceptance to pull it off - ya can't fight it. Acceptance is crucial. It's true - sometimes, when I'm in a restaurant situation, I can't have the linguine with clams, but that's the fact - I can't. My only 2 options are these: Get sick - really sick, or eat a fruit plate or something. I take comfort in the facts now. I don't have to defend them - what's to defend? There's no argument anywhere in there - it's just the truth. I deal with it ... I do, and it changed me to some degree. Call it a life lesson for me. I state the facts, and when I do, I find that people will generally find that a very attractive trait.

What's true for me may not be true for anyone else, but it's the facts - the truth, at least for me.

Take care,
k
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#10 MySuicidalTurtle

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Posted 29 September 2008 - 08:30 AM

Take time to relax and figure out what works best for you. I traveled the world and brought food with me that I could easily and lightly carry (gluten, dairy, animal-free) and did research on where I could eat out. . .even if it is simple and plain. I have dated lots and now am in a serious relationship with someone who understands, there is no point to try and be with someone who isn't going to care or respect your medical needs. You can live a great and active life dairy, gluten, soy, corn, and everything free!

I also found a therapist to help when I felt overwhelmed and sad about my "new" life. Good luck and keep us updated!
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#11 UR Groovy

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Posted 29 September 2008 - 09:58 AM

Oh, blast - I forgot you can't edit anymore. I'm not down with that. I won't be back, thanks.

In regards to my previous post: Jason, it's none of my business how you look at it, and I wish I hadn't replied. It was well-intended, and I hope you're feeling better every day.


Take care,
k
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#12 Jestgar

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Posted 29 September 2008 - 10:31 AM

Oh, blast - I forgot you can't edit anymore. I'm not down with that. I won't be back, thanks.

In regards to my previous post: Jason, it's none of my business how you look at it, and I wish I hadn't replied. It was well-intended, and I hope you're feeling better every day.


Take care,
k

Your post was actually much like what I would have said. We can't change our physical realities, but we have complete control over how we act/react to them.

A lot of times it's your attitude and confidence in yourself that gets you through difficult situations, and I'm tellin' ya, you're gonna attract a higher caliber girlfriend if you're confident.
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#13 Mtndog

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Posted 29 September 2008 - 10:49 AM

Oh, blast - I forgot you can't edit anymore. I'm not down with that. I won't be back, thanks.

In regards to my previous post: Jason, it's none of my business how you look at it, and I wish I hadn't replied. It was well-intended, and I hope you're feeling better every day.


Take care,
k

Kat- I too thought your advice was great!
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#14 JNBunnie1

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Posted 29 September 2008 - 10:57 AM

Y'know I just have to comment on this thread, because it seems I'm on the opposite side of the board from most of the people here. It never once occurred to me to care what people think of my food issues. I've put on different outfits in the mirror, tried different things with my makeup, my hair, I've worn slinky dresses to clubs, painted my nails on occasion, all sorts of girly things I do because I (occasionally) care what people think of my appearance. But I have never once worried what people will think when I bring my own food or say, "No, I can't eat that, thanks." I've honestly never had a mental struggle over how this would 'seem' to someone. I guess that's a really nice place to be, and I can only hope everyone else is able to get there someday.
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If you're going through hell, keep going. ~Winston Churchill

#15 JNBunnie1

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Posted 29 September 2008 - 10:58 AM

Oh, blast - I forgot you can't edit anymore. I'm not down with that. I won't be back, thanks.

In regards to my previous post: Jason, it's none of my business how you look at it, and I wish I hadn't replied. It was well-intended, and I hope you're feeling better every day.


Take care,
k




Ummmm..... I can still edit.......

And I thought your post was lovely.
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If you're going through hell, keep going. ~Winston Churchill


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