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

How do I deal with people who are ignorant of Celiac's disease?

TurtleSeaba
 Share

Recommended Posts

TurtleSeaba Newbie
TurtleSeaba
Posted

Have anyone had to deal with people who treat you like eating gluten free is a choice and not a medicly restrictive diet. I am a disabled Veteran and I'm only a fixed low income. With how pricey Gluten free items tend to get, my foodstamps run out fast. So I rely on 2 local food pantries. One of those pantries doesn't seem to care when I tell them I have celiac's disease and can't have any items that contain gluten. It just seems so unfair that over half the items they give me have gluten, and therefore don't help me at all. They comment things like "Move along, we don't have time for you to be picky." And "If you don't want it then give it to someone else." I can't every seem to find the right words that would make them understand that being Gluten free is not a choice, it's medicly neccessary. I wish I have a card that I could just show people and it would make them understand. I'm barely getting any food I can actually eat, and they don't care. Any advice would be appreciated.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

This is a frustrating situation. I have, until very recently, volunteered at a food pantry and they are quite overwhelmed at this point in time.  We have to prepack foods for clients for the sake of speed and I have had to tell folks to just share foods they didn't want with freinds or neighbors. Even though I had a great need myself I didn't use the pantry because I knew they wouldn't be able to take my restrictions into account. What helped me was volunteering myself. Once I was there I found that the others working there would put gluten-free stuff aside for me and within a month I had enough pasta to last me a year and often came in to find bread and other goodies saved with my name on them. I started a gluten free shelf for safe cereals, pasta, flours and mixes which had helped make it easy to just grab a couple things off the shelf for celiacs or others with dietary needs. If you have the time and are well enough maybe you could try to volunteer yourself? A couple hours a week could enable you to educate the other volunteers about celiac and be able to get the items you need including meats, eggs and fresh veggies that could help.

T burd Enthusiast
T burd
Posted
7 minutes ago, ravenwoodglass said:

This is a frustrating situation. I have, until very recently, volunteered at a food pantry and they are quite overwhelmed at this point in time.  We have to prepack foods for clients for the sake of speed and I have had to tell folks to just share foods they didn't want with freinds or neighbors. Even though I had a great need myself I didn't use the pantry because I knew they wouldn't be able to take my restrictions into account. What helped me was volunteering myself. Once I was there I found that the others working there would put gluten-free stuff aside for me and within a month I had enough pasta to last me a year and often came in to find bread and other goodies saved with my name on them. I started a gluten free shelf for safe cereals, pasta, flours and mixes which had helped make it easy to just grab a couple things off the shelf for celiacs or others with dietary needs. If you have the time and are well enough maybe you could try to volunteer yourself? A couple hours a week could enable you to educate the other volunteers about celiac and be able to get the items you need including meats, eggs and fresh veggies that could help.

You are awesome. I have thought about this before. I was basically poor until I was about 27.  I got food pantry items when food stamp issues happened. And fed by my church when teacher salary didn’t support 2 people. Or as a child our family got some. We would have coffee and tea in those boxes sometimes, and we don’t drink those for religious reasons, so we would give them to neighbors or throw them away. I didn’t get diagnosed until 38, and had enough money to purchase $$$ gluten-free items. I looked back at those days and thought how would I have even eaten?

Our church has a cannery where they package food that feeds those in need. The food is packaged on same lines as flour/ wheat, so none of that would be safe for celiacs. 

There is no way for those that are in need to get gluten-free foods when they are homeless or poor, unless someone like you steps in. Many may not know they have celiac because of money though. I’m barely able to take care of myself these days or I would go. My feet joints hurt so much and my shoulders grind and pop. (I’m only just about 42 this month) <sigh>

thanks for sharing and serving! 

  • Popular Post
GF-Cate Enthusiast
GF-Cate
Posted
  • Popular Post

Hi Turtleseaba,

I don't know if it would help (and maybe you have already tried this), but perhaps a phone call (or email) to the pantry manager/ director/lead volunteer on a day that is not a distribution day to talk, explain your situation and explain about celiac and ask if it's possible to receive safe food and/or have gluten-free food service aside for you. 

And include a link to an overview of celiac, such as:

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

Some pantries do set aside gluten-free and allergen-free foods, but unfortunately demand exceeds need. 

There are some services that provide gluten free food assistance that might be helpful. Most do have waiting lists unfortunately, but applying now will at least offer other possibilities in the future. 

One is Mend Hunger. You can request a box and they send the items by mail:

https://www.mendhunger.org/

Food Equality Initiative (FEI) medel allows you to choose/shop for items. They subsidize "purchases of free-from food for qualified clients (FEI Family Members) on Free From Market (FFM). FEI also covers the shipping costs for the direct-to-door delivery service."

https://foodequalityinitiative.org/individual/ 

(there is a waitlist - apply here: https://foodequalityinitiative.org/request-services/

You can apply to have a monthly care package of gluten-free items sent from GIG Cares (website says program is at capacity but you can join the waitlist):

https://www.gigcares.org/

The National Celiac Association has a list of food pantries by state that seem to have awareness of celiac and offer gluten-free items - perhaps there is one local to you on the list:

https://nationalceliac.org/gluten-free-food-pantries/

Securing Safe Food is an organization that works with individuals and food pantries to secure allergen-free/celiac safe foods:

https://securingsafefood.org/index.php/our-program/

https://securingsafefood.org/index.php/contact-us/ 

Another idea is to google for pantries that serve veterans /disabled vets, as they may be more willing to try to help meet your dietary needs. 

Jays911 Contributor
Jays911
Posted

Our Parish does food pantry drives twice a month. I make sure my donations are all gluten-free. Everything helps. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,509
    • Most Online (within 30 mins)
      7,748
    Mr-Collateral531
    Newest Member
    Mr-Collateral531
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Can gallbladder issues cause symptoms of celiac disease?

      By knitty kitty · Posted

      Welcome to the forum, @robingfellow and @Mr-Collateral531, I also had to have my gallbladder removed in emergency surgery.  The gallbladder uses lots of thiamine vitamin b1 to function.   The gallbladder cannot secrete bile if it doesn't have sufficient thiamine.  Thiamine provides our muscles and glands energy to move and secrete needed enzymes and hormones.  The thyroid is another gland that requires lots if thiamine to function and secrete hormones.   Our brains, just thinking at a desk job, requires as much thiamine as our muscles do if running a marathon.   Migraines are linked to thiamine deficiency. Thiamine is the first of the eight B vitamins that our body needs. Thiamine can only be stored for three weeks at most.  Our thiamine stores can be depleted in as little as three days.  We need more thiamine when we have a physical injury (like recovering from surgery or fighting the flu), if we're emotionally stressed or traumatized, and if we're physically active.  Thiamine, like the other B vitamins, is water soluble and easily excreted in urine or most in diarrhea.  B vitamins are commonly poorly absorbed in Celiac Disease.  Thiamine and the other B vitamins need to be taken together because they interact with each other to make life sustaining enzymes.  Thiamine deficiency can affect individual organs.  Gallbladder dysfunction is connected to thiamine deficiency, as is hypothyroidism.    Migraines are connected to thiamine deficiency.  Gastrointestinal Beriberi (abdominal pain, vomiting, etc.) is a result of thiamine deficiency.  Tachycardia and fatigue are also symptoms of thiamine deficiency.   Thiamine and magnesium make enzymes that are essential for life.   Thiamine is needed to absorb certain minerals like iron.  Anemia and thiamine deficiency frequently occur together.  Thiamine deficiency can cause poor blood cell production (including low antibody production).   Thiamine interacts with other vitamins and minerals.  Vitamin D is not utilized by the body until turned into an active form by Thiamine. Thiamine is safe and nontoxic even in high doses.  High doses of thiamine correct deficiencies quickly which prevent further health deterioration.  A one a day type multivitamin is not sufficient to correct vitamin and mineral deficiencies that occur in the malabsorption of Celiac Disease.   The Gluten free diet is low in vitamins as they are not required to be enriched with vitamins lost in processing.  Supplementing with thiamine and the B vitamins boosts their absorption.   Helpful Reading: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/ P. S. Try a DNA test to see if you have any known genes for Celiac Disease before doing a gluten challenge.
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the reply ! I am asking because tomorow i have egd and nobody told me not to eat gluten-free oats… and i was scared that it could ruin my biopsy results… 
    • trents
      Certified gluten free oats

      By trents · Posted

      Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      Can gallbladder issues cause symptoms of celiac disease?

      By robingfellow · Posted

      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
×
×
  • Create New...