Jump to content
  • 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

Feeling like a burden to family/friends?


SugarySpiceSassy

Recommended Posts

SugarySpiceSassy Newbie

I’ve been diganosed for about a year now (had an endoscopy) and right now I’m in pain after eating out at a restaurant I think there was some cross contamination I let my guard down though as I’ve been feeling better recently but I didn’t want to be “annoying” and make everyone go to another restaurant. 

My family has been annoyed by me going gluten free. They roll their eyes when I ask if this is gluten free and read packages. They just want to go out eat McDonald’s, Chinese food, bread. 

My older sister I believe she means well but she keeps buying me vegan stuff that I can’t eat even though I explained to her what gluten free means. 

 

They don’t like when I cook as in their words “it’s too much mess, or “it’s too late to cook.” I do clean up after myself, I just feel like I’m in the way I can’t eat what they eat and I don’t know what’s a bigger burden me not being able to eat what they eat or me having to go to hospital because I can’t stop throwing up.

school is....

 I’m in college at the moment they have all types of parties and get together with pizza, cake.  Bread Etc. 

 

i would give just about anything to eat gluten and fit into society again.

seems like I’m whining and their worse things to have it’s just hard to fit in when the majority of the world can just eat whatever. 

I just feel like I’m being over dramatic and it’s not a big deal. 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Hey, this is the place where you can whine all you want!  We get it!  

I am so sorry that your family is not supportive.  Do they know that celiac disease is genetic?  That they can be asymptomatic and still have celiac disease?  I am also sorry that you were glutened!  You need to stand up and advocate for yourself.  Consider joining a local celiac group for support.  I dine with my family.  I squally order a drink.  For a while it drive my parents crazy, but now no one cares.  Better to be healthy than  indulge in gluten!  

Be sure you take food with you.  I can tell you that when I open my cooler at a high school football game, the people around me are envious.  My own gluten-eating family begs for additional slices of my gluten free cakes and other goodies.  

My daughter does not have celiac disease, but her friend does.  For prom, the group is are going to a restaurant that will accommodate her celiac friend and a vegan.   How cool and supportive is that?  

Be annoying!  It is your right to maintain good health!  Good luck in your upcoming finals.   We start University applications soon!  

Ennis-TX Grand Master

Get you own prep area in your room...fold out table, mini fridge, microwave with Nordic Ware omlette makers, rice cooker, steamer, grill plate + splatter cover all microwave cookware. Perhaps a griddle, rice cooke/crockpot combo. Anway you own cookware and mixing bowls and clean you stuff in tubs or the tub and avoid the whole family crap.....hate to say it but I was there with the whole family stuff...they do not get it and you just have to do your own thing to keep you safe. I drove my family damn near mad, my symptoms back then were causing me to go Mr Hyde and start breaking things from the briain fog and confusion...it was a emotional train wreck and I had to move out and get my own gluten free home......you will eventually too but just get by how you can for now.
I still find omelettes and egg dish my Go tos with grain free toast or bread, nut butters, seed butters, veggies, and nut flour/butter based porridge. But I have carb issues lol, you can make do with potatoes, rice, meat, fish etc also all naturally gluten free.
But really try to do your own thing and not press it on them if they do not understand...I burned many bridges with those fights, just deal with it if they will not accept it, and do you own thing, family is not all about food, you can still enjoy going out, just bring protein bars and meal prep/lunch boxes.
Here are some links to help out with tracking down some products
https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

 

tessa25 Rising Star

If you get your own chest freezer you can store frozen pizza or portion  out/freeze some pizza fixins and cook yourself a pizza on pizza night. If you guys eat Chinese takeout you can grab some Feel Good Food Chinese food from your freezer and heat up chinese food for yourself. If you can find a few restaurants that are safe for you, suggest one of those on restaurant night.

 

Moggy Apprentice

You are not being overdramatic. They are either being willfully ignorant, or totally uncaring. 

But you simply can't make yourself ill by indulging them. 

 

pikakegirl Enthusiast

You are justified in your feelings about coping in a glutened world. It took me about a year to put my foot down in my own home and make it gluten free after others mishandled thier gluten foods in the kitchen. Iwish they had cared enough to do it for me but that is my lersonality type not theirs. Dont get me wrong, they love me but i have concluded that humans are selfish by nature and adverse to change. Its scary for us and for them when a disease enters thier world that changes life. I was not good at standing up for myself but i am a survivor and i adapted. The hardest thing so far has been a friend, also Celiac, who pressures me to be a foody. We have limited communication. Love is tollerance, faith and respect for anothers boundries. I know who truly loves me and limit exposure to those who dont.

Ennis-TX Grand Master

After today I feel the need to share this story, as many know I suffered trying to live life with my family after diagnosis, they tried a bit but overall they would not give up gluten and were....ignorantly hazardous with food and making me sick. I was at the time...suffering from the mental effects of gluten with loopy thoughts, anxiety, going completely hyde mode and having fights with my parents and breaking things, punching walls, and at points banging my head on walls trying to get my mind to stop looping and work right while dealing with constant other issues. I burned bridges and moved out, I spent the first year trying to be self supportive...it was harsh, I was at some points stealing produce, eating acorns, learning what local flora was edible etc. I then started getting help from my dad when bake sales were down, starting doing better with my bakery.

Starting 2-3 years ago, after my grandparents had a death on each side...my parents stopped doing Holiday meals as much with extended family. I took this upon myself and started making gluten free and safe meals for me and inviting them over.
This Easter was a huge success, I even had my mother come and help me with making Easter lunch. We talked alot, I asked her how she felt when she used to cook with her late mother for the holidays....I told her I feel the same when she comes over and helps me out and I want to do it more. It was emotional day, a re-connection with family, a start of new traditions.
My mother is recently dealing with many of the things I struggled and struggle with....she recently started having allergic reactions to corn, she has bloating and diarrhea daily....and is considering getting tested for celiac and now having sympathy for the issues I have dealt with for years.

Family changes and if you believe in god or some form of karma....it really does work in some way down the road. Familes if you keep trying with eventually come to some kind of acceptance or compromise, even have karma like results in some issues you might find. Just give it time, as mentioned by pika

4 hours ago, pikakegirl said:

humans are selfish by nature and adverse to change. Its scary for us and for them when a disease enters thier world that changes life.

Is  very true, but being around something for awhile humans can be come acceptive of anything good or bad and work it into their daily routine.

PS I will be posting my dinner set up in the Easter Post in a bit.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
22 minutes ago, Ennis_TX said:

After today I feel the need to share this story, as many know I suffered trying to live life with my family after diagnosis, they tried a bit but overall they would not give up gluten and were....ignorantly hazardous with food and making me sick. I was at the time...suffering from the mental effects of gluten with loopy thoughts, anxiety, going completely hyde mode and having fights with my parents and breaking things, punching walls, and at points banging my head on walls trying to get my mind to stop looping and work right while dealing with constant other issues. I burned bridges and moved out, I spent the first year trying to be self supportive...it was harsh, I was at some points stealing produce, eating acorns, learning what local flora was edible etc. I then started getting help from my dad when bake sales were down, starting doing better with my bakery.

Starting 2-3 years ago, after my grandparents had a death on each side...my parents stopped doing Holiday meals as much with extended family. I took this upon myself and started making gluten free and safe meals for me and inviting them over.
This Easter was a huge success, I even had my mother come and help me with making Easter lunch. We talked alot, I asked her how she felt when she used to cook with her late mother for the holidays....I told her I feel the same when she comes over and helps me out and I want to do it more. It was emotional day, a re-connection with family, a start of new traditions.
My mother is recently dealing with many of the things I struggled and struggle with....she recently started having allergic reactions to corn, she has bloating and diarrhea daily....and is considering getting tested for celiac and now having sympathy for the issues I have dealt with for years.

Family changes and if you believe in god or some form of karma....it really does work in some way down the road. Familes if you keep trying with eventually come to some kind of acceptance or compromise, even have karma like results in some issues you might find. Just give it time, as mentioned by pika

Is  very true, but being around something for awhile humans can be come acceptive of anything good or bad and work it into their daily routine.

PS I will be posting my dinner set up in the Easter Post in a bit.

That's great!

squirmingitch Veteran

That is fantastic Ennis! I am so happy for you & your mother to be truly reconnecting. Good too that she will get tested.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.