Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Ruthie13

What Would You Do...?

Recommended Posts

You’ve changed your life, attempting something new and difficult in the work you do (volunteering in Africa) and as a result you have been placed in a situation where you seem to be getting glutened all the time (living with multiple Gluten lovers). You have tried for 3 months to narrow down the sources of contamination, at times you are better at other times (the majority) you’re definitely not. You are in a place which has nothing in the way of support for coeliacs and food options are very limited. The work you are doing is difficult enough as it is, but being unwell makes it more so and you don’t feel like you are achieving what you should and you feel like you are failing in fulfilling your responsibilities in your work. Do you:

a.)Continue down the path of trying to get better? How long do you try? When is enough enough?

b.) Chuck in the towel so to speak, say you’ve given it your best shot and look at getting back to living a life where you can be well?

This is my situation, would love some outsider views to help get different perspectives on this.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


This may be more simplistic of an answer than you were looking for, but there are always plenty of volunteer jobs that need filling even in the developed nations. You have a serious medical condition (or possibly the world has a serious cuisine problem but that's a different discussion), just how much suffering do you need to inflict upon yourself to say that you've contributed enough to easing the suffering of others?


Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

Share this post


Link to post
Share on other sites

You said that well, WheatChef.

Ruthie, you're not "throwing in the towel" if you come home. You're creating an opportunity for yourself to find a different way of volunteering where you can stay healthy and effective.

Share this post


Link to post
Share on other sites

Go with B. There are plenty of places that can use you here and taking care of your health is vital.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Go with B. There are plenty of places that can use you here and taking care of your health is vital.

I agree. It's great that you are helping out. It's awesome. But you can't help anyone if you're dead/malnourished/sick/tired/etc. There are lots of people that need help, lots of causes to be a part of. Going gluten free doesn't mean these things can't be a part of your life. :) But you gotta look out for yourself first.


gluten-free since February 2010.

Hypothyroidism as of July 9th, 2010

Share this post


Link to post
Share on other sites

the more simplistic answer the better,I say! thank you all for your input. Its such a hard decision to make, I feel like I'd be letting so many people down but I'm letting myself down being here. I had such big plans for this year but I suppose I might just have to make some new ones. Well see.

Share this post


Link to post
Share on other sites

As corny as it sounds, I really do believe that everything happens for a reason. Maybe you are meant to move on to something else, and this is life's way of letting you know. There may be great things in store for you out there, somewhere other than where you are now.

Truly, what does your heart tell you? If you really listen to yourself, you'll make the right decision.

Gluten issues aside, for years I struggled with leaving a job that was killing me in many ways. Problem was, I loved the job . . . or I thought I did, and I loved working with and helping the people around me.

But it was too much -- 12 to 16 hours a day, working weekends, and 24/7 stress beyond belief. I was in denial of how much I needed to make a change, and I fought it for what seemed forever.

Honestly, I felt as though quitting would be throwing in the towel, too. I was wrong. I was supposed to move on and life was telling me so, but I ingnored it.

I guess you could say I was playing God -- I thought I knew what was best for me despite life hitting me over the head with a hammer!

Here's the thing: The more I denied needing to change direction, the worse my situation became.

Life it like that. If you're supposed to make a change, whether it's a job, a relationship or whatever, the situation will keep getting continually tougher and TOUGHER, until you finally get it.

If life seems to be indicating your taking another direction, despite your not wanting to give up, it might be best to listen to what your heart and your gut are telling you.


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

Think of it like this: you're on a plane, and there is a kid next to you flying alone. THe oxygen masks fall down. PUT YOURS ON FIRST because if you don't, you can't help the kid next to you. I use this as a parenting philosophy too.

If you aren't healthy enough to enjoy your experience or even your life in general, you can't help anyone else. Do what you need to do, and don't feel guilty :)


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

Share this post


Link to post
Share on other sites

I heard this phrase the other day and it stuck with me; you're not giving up you're changing the timetable.

You've made a tremendous contribution in 3 months for a cause so many people believe in but few can (or would) actually do. That's amazing. Right now you need you. You can apply those same skills to help yourself, to get healthier, to get stronger. Once you're in a better state health-wise you can find a new cause. Who knows, someday the world may catch on better about celiac and you'll be able to return to Africa and then you'll be stronger and healthier!

I love the airplane oxygen mask analogy. That's brilliant.


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

Share this post


Link to post
Share on other sites

You need to get healthy. You have a serious autoimmune disorder and when you get glutened, every single time your immune system causes destuction to your intestines. It's not that it's just making you sick, it's causing wounds inside your organs.

Celiac is limiting. It sucks and it's hard and you can scream into your pillow about it. I'll be right there with you to scream about it, too. But it's the reality of our lives.

There are needs everywhere in the world, and you need to find volunteer opportunities where you can be safe and healthy. Worry about letting yourself down, not those other people. If you are sick and you have nothing to give, then you can't be there for yourself or anybody else.

I think volunteering in remote areas will have to be short term, and you will have to pack tons of food for yourself. Come home and be well. Then you can reevaluate later how you can meet your goals and still stay healthy.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

Share this post


Link to post
Share on other sites

Thanks again everyone, you are all very clever people :) I just needed to hear from people that what I was thinking and feeling was justified. I really struggle and worry about what others think, especially when a lot of people don't really understand coeliac and think "oh you just can't eat bread right?"...sooo not that simple haha! I've spoken to my project manager and she is very supportive of whatever decision I make....she said its awful seeing me mope about the place. I'm going to give it a little longer to see if my final attempts to avoid gluten help and if not it'll be time for me to move on. Thanks again for all your straightforward and sensible advice.

Share this post


Link to post
Share on other sites

Think of it like this: you're on a plane, and there is a kid next to you flying alone. THe oxygen masks fall down. PUT YOURS ON FIRST because if you don't, you can't help the kid next to you. I use this as a parenting philosophy too.

If you aren't healthy enough to enjoy your experience or even your life in general, you can't help anyone else. Do what you need to do, and don't feel guilty :)

WHAT A WONDERFUL POST!


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

Thanks again everyone, you are all very clever people :) I just needed to hear from people that what I was thinking and feeling was justified. I really struggle and worry about what others think, especially when a lot of people don't really understand coeliac and think "oh you just can't eat bread right?"...sooo not that simple haha! I've spoken to my project manager and she is very supportive of whatever decision I make....she said its awful seeing me mope about the place. I'm going to give it a little longer to see if my final attempts to avoid gluten help and if not it'll be time for me to move on. Thanks again for all your straightforward and sensible advice.

You are in my best thoughts, and I look forward to hearing how things are going for you. Hang in there. You have so much good to give the world . . . the better you feel, the more good you can give to others. : )


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

Thanks Lynayah, I posted an update recently. We've made the decision to leave and will move on at the end of July. Its been an exhausting task telling everyone about the change in plans but I feel good about the decision and its nice to know that there will be an end to feeling so awful. I'm struggling in some ways because for the last week i've been feeling pretty good and it makes me doubt my decision but I know its only a matter of time and I'll be hit again and I just have to keep that, and how I feel when I get glutened, in mind.

Thank you everyone for your support, this place is so good to come to when you are somewhere where there is so very little understanding about this disease.

Share this post


Link to post
Share on other sites