Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Would You Do...?


Ruthie13

Recommended Posts

Ruthie13 Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

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?

Skylark Collaborator

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.

ravenwoodglass Mentor

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

zergcoffeebean Newbie

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.

Ruthie13 Rookie

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.

Lynayah Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



K8ling Enthusiast

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 :)

kayo Explorer

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.

sandsurfgirl Collaborator

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.

Ruthie13 Rookie

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.

  • 4 weeks later...
Lynayah Enthusiast

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!

Lynayah Enthusiast

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. : )

Ruthie13 Rookie

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...