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I Want To Cry.

Shade

By Shade
in Coping with Celiac Disease

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Shade Newbie
Shade
Posted

Intro:

I used to be an active member here, but it has been a couple years since I have posted. I have created a new account due to embarrassment over what I am about to post.... Due to tough times I have had to go to the food bank. I just don't want that associated with my other account. In a way it feels silly, but it has been very emotionally difficult.

For the record I was diagnosed April 2011. Negative blood test, positive biopsy.

 

My husband lost his job a few months back and has been unable to find work (overqualified?) and there have been issues with unemployment. With resources now exhausted we have had to turn to a food bank. You don't get to choose what food you get and they do not make any allowances for dietary needs.

90% of everything they give you is a bakery item. The rest is items that may or may not contain gluten.

 

My husband at the gluten containing items and saved the gluten free items for me. He tried to keep all of those items contained to a small portion of the house. This however left me with very little to eat. I am super meticulous with my diet but when you are desperate and hungry...

 

Despite doing our best I was glutened anyways. I have been accidentally glutened before, but not this bad. I feel just like I did right before my diagnosis. The worst is the burning muscles. I haven't had to deal with this since pre diagnosis. It feels like I am working out heavily and “feeling (lactic acid) the burn” even though I am sitting down, even when I try and sleep at night.

This is how I got my original diagnosis. The Dr. kept giving my muscle relaxers and then one day decided to test me for vitamin deficiencies. They were all dangerously low. Went gluten free right away so by the time I went in for the follow up the blood test was negative but I did get a positive biopsy. My Dr. said I was literally feeding off my own muscles and organs due to my inability to absorb nutrients.

I ma in so much misery I want to cry. I can barely cope with the emotional and physical combination. I have taken glutenease, and I know I should do a through cleaning (my husband bless his heart doesn't see the obvious sometimes when it comes to housework) but physically I can't.

 

It is just hard for me to believe that in less than a month the symptoms have gotten this bad. It is funny how you forget how bad it was pre diagnosis until you are there again.

 

When we get back on our feet I am going to make it a habit to donate gluten/allergy free items to the local food banks. I never thought of there being such a need before. It is an embarrassing fact.

 

Thanks for letting me vent.

 

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worriedseattlemom Newbie
worriedseattlemom
Posted

Oh no! Virtual hugs to you. I know this ordeal has you embarrassed, but I'd love to make a small donation to put toward some meat/veggies/fruit or other gluten free food for you. Do you have a paypal account or other way I could contribute?

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ravenwoodglass Mentor
ravenwoodglass
Posted

So sorry you are in this situation. Have you gone for help from social serivices? You should qualify for food stamps which would help a great deal. I know from past personal experience how difficult that process can be and how humiliating. Sometimes it is just something we have to do. 

It is shameful how often many food banks don't even try to accomodate a persons food needs because things like celiac or diabetes. I am fortunate to have a food bank in my area that will. I used to volunteer at one. They would give extra fruits or veggies in place of some of the gluten items.

Try going to Catholic Charities in your location. You don't have to catholic for them to give you aid. They may be able to help or intercede with the food bank for you.

Are there any celiac support groups anywhere near you? They may also be able to help you.

(((((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))))))))) 

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mamaw Community Regular
mamaw
Posted

I know  you  don't  want  pity  so I'm  sending prayers  & hugs.  Raven  gave  some good  ideas for  help  . I  also  will offer  a  suggestion e-mail  directly  to  gluten-free  bakers/vendors.. I know  in the past  a person  was  in need  from Hurricane Sandy  &  I  got  her  gluten-free  food  from  several  places  that  shipped to a post  office  to  help her  out.. If  you  would  like to pm me your  address  I  will  check  around  for you  or  you can do it  yourself. I too  would  offer  a  donation to help....just  it  you decide  to take up  our offer  please  pm  us  don't  post  any  personal info  directly  here....

Just  to know  many  people  fall onto  hard  times &  I agree over  qualified  people  can't  get  work  for  a  lesser  job  or pay... Our  daughter  is in the  same  boat , too  qualified...so sad  but  this  is  where  we  in todays world....

Keep  your   head  held  high ..... I hope  more  will follow  suit  & offer a  donation to help  you  at this  difficult  time.... 

hugs  & prayers

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nvsmom Community Regular
nvsmom
Posted

:(  ((HUGS))

You have had a rough go.  How unfair to you.... I'm so sorry that you've had to go through that.  :(

The other ladies gave some good advice, so I'll just send you my best wishes.  I hope you start feeling better soon, and that things turn around for you this spring.

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icelandgirl Proficient
icelandgirl
Posted

Goodness that's hard. I'm so sorry you are going through this. ((((Hugs))))

The ideas above are really good...I hole things get better for you quickly.

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kareng Grand Master
kareng
Posted

This is horrible. I don't know where you live, but maybe there are other food pantries? I know we have some here that allow you to " shop". You could choose things like beans and rice and canned veggies. Not exciting, but safe.

I think someone suggested this but check with your local Celiac association or food allergy support groups. Some of them have ways to help or can steer you in the right direction.

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cap6 Enthusiast
cap6
Posted

I am so sorry.  Too many are faced with this issue of having to seek help.  As a former social services employee I say please, apply for food stamps (Snap, calfresh.....depending on where you live).  Depending on your income (unemployment benefits etc) and number in your family you could qualify for some assistance.   Many states now allow you to apply on line and you need only to go into the social services office for an interview.    You will need to provide proof of your income and Id.   When you meet with your worker do ask about additional resources.  Depending of the size of the town where you live there are often more than one or two choices of "food banks". 

 

As for food banks...too many of them rely on whatever community donations they can find and most of that comes from the "day old" bakery items.   You  could try speaking to the manager of your local pantry and they may be able to give you some resources or even, as it is a major health issue, call you or set aside any gluten free items.  Also ask if they every receive fresh veggies.  Those are so gluten free!   Your social worker should have a list of all available food banks for your town.  Often churches are a good choice and do speak with the person in charge at the church as they often get donations from their members and you would have a better chance of finding gluten free items.  They can "put out the word" to their members that they have a person in need for health reasons.

 

If you live in a fair sized town google and see if there is a CSA (Community Supported Agriculture) nearby.  This is a, usually, organic community supported farm(s) that you buy into for regular weekly deliveries.  Often they have a surplus of fresh organic veggies that they donate to pantries, senior centers etc.  If would be worth your time to call them and find out if they have anything or any place that they donate.  Also, even if you are not in the age group, contact your local senior center and see if they have access to fresh veggies etc. 

 

Hang in there.  There are some options and help.  This is not a forever situation but I know that it feels like it right now! 

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Serielda Enthusiast
Serielda
Posted

I am so sorry to hear about this going on for you. I honestly think that food banks should also have selections for families of medical special needs. In fact your story inspires me to want to try and make a effort to get that to happen where I live or start an initiative of one. In the meanwhile I know in New Orleans second harvest is a food bank group who does make a serious effort to make this happen including organic options so they may do gluten-free. They are a big group so they maybe outside of Louisiana and offer assistance. I hope this terrible time passes quickly for you and your family. I will light a candle to hope peace and blessings come your way.

Intro:

I used to be an active member here, but it has been a couple years since I have posted. I have created a new account due to embarrassment over what I am about to post.... Due to tough times I have had to go to the food bank. I just don't want that associated with my other account. In a way it feels silly, but it has been very emotionally difficult.

For the record I was diagnosed April 2011. Negative blood test, positive biopsy.

 

My husband lost his job a few months back and has been unable to find work (overqualified?) and there have been issues with unemployment. With resources now exhausted we have had to turn to a food bank. You don't get to choose what food you get and they do not make any allowances for dietary needs.

90% of everything they give you is a bakery item. The rest is items that may or may not contain gluten.

 

My husband at the gluten containing items and saved the gluten free items for me. He tried to keep all of those items contained to a small portion of the house. This however left me with very little to eat. I am super meticulous with my diet but when you are desperate and hungry...

 

Despite doing our best I was glutened anyways. I have been accidentally glutened before, but not this bad. I feel just like I did right before my diagnosis. The worst is the burning muscles. I haven't had to deal with this since pre diagnosis. It feels like I am working out heavily and “feeling (lactic acid) the burn” even though I am sitting down, even when I try and sleep at night.

This is how I got my original diagnosis. The Dr. kept giving my muscle relaxers and then one day decided to test me for vitamin deficiencies. They were all dangerously low. Went gluten free right away so by the time I went in for the follow up the blood test was negative but I did get a positive biopsy. My Dr. said I was literally feeding off my own muscles and organs due to my inability to absorb nutrients.

I ma in so much misery I want to cry. I can barely cope with the emotional and physical combination. I have taken glutenease, and I know I should do a through cleaning (my husband bless his heart doesn't see the obvious sometimes when it comes to housework) but physically I can't.

 

It is just hard for me to believe that in less than a month the symptoms have gotten this bad. It is funny how you forget how bad it was pre diagnosis until you are there again.

 

When we get back on our feet I am going to make it a habit to donate gluten/allergy free items to the local food banks. I never thought of there being such a need before. It is an embarrassing fact.

 

Thanks for letting me vent.

Intro:

I used to be an active member here, but it has been a couple years since I have posted. I have created a new account due to embarrassment over what I am about to post.... Due to tough times I have had to go to the food bank. I just don't want that associated with my other account. In a way it feels silly, but it has been very emotionally difficult.

For the record I was diagnosed April 2011. Negative blood test, positive biopsy.

 

My husband lost his job a few months back and has been unable to find work (overqualified?) and there have been issues with unemployment. With resources now exhausted we have had to turn to a food bank. You don't get to choose what food you get and they do not make any allowances for dietary needs.

90% of everything they give you is a bakery item. The rest is items that may or may not contain gluten.

 

My husband at the gluten containing items and saved the gluten free items for me. He tried to keep all of those items contained to a small portion of the house. This however left me with very little to eat. I am super meticulous with my diet but when you are desperate and hungry...

 

Despite doing our best I was glutened anyways. I have been accidentally glutened before, but not this bad. I feel just like I did right before my diagnosis. The worst is the burning muscles. I haven't had to deal with this since pre diagnosis. It feels like I am working out heavily and “feeling (lactic acid) the burn” even though I am sitting down, even when I try and sleep at night.

This is how I got my original diagnosis. The Dr. kept giving my muscle relaxers and then one day decided to test me for vitamin deficiencies. They were all dangerously low. Went gluten free right away so by the time I went in for the follow up the blood test was negative but I did get a positive biopsy. My Dr. said I was literally feeding off my own muscles and organs due to my inability to absorb nutrients.

I ma in so much misery I want to cry. I can barely cope with the emotional and physical combination. I have taken glutenease, and I know I should do a through cleaning (my husband bless his heart doesn't see the obvious sometimes when it comes to housework) but physically I can't.

 

It is just hard for me to believe that in less than a month the symptoms have gotten this bad. It is funny how you forget how bad it was pre diagnosis until you are there again.

 

When we get back on our feet I am going to make it a habit to donate gluten/allergy free items to the local food banks. I never thought of there being such a need before. It is an embarrassing fact.

 

Thanks for letting me vent.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Just saw this posted in Foods section by 'Wintersong' maybe there is something there that can help so you may want to check out her post.

 

"gluten-free Giveaways For Celiac Awareness Month"

 

I haven't checked it out yet so not sure what might be there. 

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Tigercat17 Enthusiast
Tigercat17
Posted

Hi Shade,

 

I'm so sorry to hear that you're going through this. I wasn't sure if you tired for applying for food stamps or not and I'm not sure what state you live in... The link below is for PA, but I thought this website might be helpful. I just applied for my ex-husband last night. He has cancer and is really struggling. But I'm sure whatever state you live it there should be a COMPASS website for you and you'll be able to see if you're eligible.

 

Open Original Shared Link

 

 

(((((((((( Sending prayers & big hugs to you! ))))))))))

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Shade Newbie
Shade
  • Author
Posted

Thankyou all for your support. I couldn't take money from anyone, but the offers very generous and kind. It has been hard to come back to the is post as this has been extreamly hard emotionaly as well as physicly. On the bright side, my Husband started a new job this week. At the same time they cleared up the issues with unemployment so things are looking up. At the time they wouldn't give us foodstamps due to "pressumed" income from unemployment that we hadn't recived due to his former employer making things difficult. Food stamp card is in the mail. Another week or so and we can start getting caught up on everything.

 

Still symptomatic but today was better. It doesn't help that I had a bout of absentmindedness that I blame on not having gluten in my house for 4 years prior. Usualy nothing enters my house if I am not sure that it is safe. 

 

More than anything I would like to create awarness about the need gluten and allergy free foods at food banks.

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mamaw Community Regular
mamaw
Posted

Shade, that  is wonderful  you are  now seeing a  turn a round. I now  it  isn't  perfect  yet   but  heading in the right  direction  is  great.. It is  so kind of you  to want  to  pass  along  your living  knowledge  of  what  it is like  having  an illness  & not  being  able to  get  help on  the  gluten-free food.... many food banks  have  gluten-free  available  but  quite  sure  there are more  that  don't & that is  sad....I know  there are people  who bleed the system  but  then  there are  those  like  your  family  who have  worked  & struggled  to  make a decent  living  only to  fall  short  because  of a  job  loss or  illness... those  are  who  truly need  a  hand  on occasion....

I have  helped  several people on this group  over the years  & I never thought  of it  as a hand out.  For  me,  it  is  what  I was raised  to do  help others  when  times  aren't  good, giving  back  is the only  way  in our book of life  to live. We  wouldn't  want it  any other  way... Life  isn't about  ourselves  but  the joy comes  from  sharing  with another...god's  blessings  to you & yours ....keep your  head  high! hugs

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ravenwoodglass Mentor
ravenwoodglass
Posted

Great to hear that things are looking up. I hope you can heal quickly and are feeling better soon. I hope things only continue to improve. 

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squirmingitch Veteran
squirmingitch
Posted

Our Postal carriers had their annual food for families food drive recently and I donated a whole box of gluten-free foods. I do the same when our grocery store has it's annual drive. I know how it feels to be on food stamps -- been there, done that only I had no idea either of us were celiac then. I can't imagine trying to feed yourself from a food bank or food stamps when you have celiac so now I am very cognizant of what challenges one faces in those situations and give all I can that is gluten free. Everything I gave had gluten free written prominently on the front of it -- hopefully that will spark whoever sorts the items to realize there are those out there with special dietary needs & make a special section for those.

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Michielyn Newbie
Michielyn
Posted

Glad things are better!

My friend had to get food stamps and I went with her to appointments because she didn't want to go alone The worker had a huge stack of vouchers for a local farmers market that no one ever took. She said a lot of places are starting to do something similar.

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kareng Grand Master
kareng
Posted

Glad things are better!

My friend had to get food stamps and I went with her to appointments because she didn't want to go alone The worker had a huge stack of vouchers for a local farmers market that no one ever took. She said a lot of places are starting to do something similar.

Our farmers market, and others around the country, will swipe $25 off the food stamp card ( they aren't stamps or tickets any longer, they are like a debit card these days). They then give you $50 worth of tokens to spend in the farmers market. Years ago, they used to have surplus cheese they would give you a chunk of. Not sure if they do this any more, but it was great cheese! We have a group that will pick in people's gardens or orchards and donate the food to Harvesters. i bet they let workers take some home, too.

Edit - doesn't look like they do the cheese any longer.For all the jokes that were made, I and many people I know, liked the cheese. It made the best grilled cheese and Mac and cheese.

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nonnarae Rookie
nonnarae
Posted

I am glad to see things are better! I understand that there is a lot of negative connotation with the LDS church, but they have a great food bank and help ANYONE who needs it. You do not have to be LDS. Please if you are still hurting sstop at the nearest church and ask to speak with a Bishop. They will help you PRONTO and have tons of fresh fruits, veggies, etc.. and will mark off extra for your special needs! 

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      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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