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

The next acceptance battle

Galixie

By Galixie
in Coping with Celiac Disease

Recommended Posts

Galixie Contributor
Galixie
Posted

I might hold the record for being in denial the longest. After five years I'm just now coming to the realization that gluten is a problem for me after all. As difficult as it has been for me personally to reach a point of acceptance, now I find that I will have to persuade my friends.

They mean well and they just want me to retain some skepticism. I get that. But I feel like I've already fought a battle with myself (and lost) and that I shouldn't be obligated to convince anyone else of my need to be gluten free. On the other hand, I would like them to understand and accept that I am making the healthiest choice I can for my body.

Naming my gluten issue has been a challenge for me. I feel like the perception in the general population of the term 'gluten intolerant' is that it is less serious than celiac and that corners can be cut. But I've also been told repeatedly that I don't have celiac so I feel like I can't use that term. I think I feel more comfortable using the term 'gluten ataxia' since it seems to get to the heart of my problem, even if nobody knows what it is. Using that description will also remind me that I really can't become lax about cross contamination since the damage I'd be doing to myself would likely be permanent. :(

I can sort of understand where my friends are coming from in their resistance. One of them bakes and it means I can't taste-test her creations anymore. Others have a tendency to hold social gatherings at restaurants and they'd find it inconvenient to accommodate my need to eat either before or after their get together when the restaurant they've chosen doesn't have anything that is safe for me. It also means that I can't just spontaneously go out to eat somewhere with any of them (and none of us are good at pre-planning). Still others just want there to be more solid science to back up my claim. I understand all of this. I don't know how to make it easier for any of them. Is there anything I can do?

On top of all of that, I still have a lot to learn about navigating gluten free as a permanent lifestyle. And, at some point, I will need to grieve a bit...

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

For scientific evidence show them this: Open Original Shared Link

And how is it inconveniencing them if you eat before you go? Have a beverage and socialize because their company is what matters, not what everybody is or isn't eating. And for spontaneous get togethers, keep food like Lara bars, bags of nuts, or the like in your purse at all times. Even hard boiled eggs if you have an idea that it might happen, or a sandwich.

Yes, you do need to grieve. We all did. But then remember that if we can do it, you can too. And the longer you are gluten-free the easier it will get for you, for your friends, and for your emotions.

(((((HUGS)))))

squirmingitch Veteran
squirmingitch
Posted

Be sure to read the Newbie 101 in the Coping section. That will help you learn all the rules & navigate gluten-free as a permanent lifestyle. BTW, you can't be there when your friend who loves to bake is mixing up her creations. Flour all in the air for you to breathe. What goes in your nose goes down your throat to your tummy.

Galixie Contributor
Galixie
Posted
  • Author

Thank you for reminding me about the airborne flour issue. I'm not usually at her house when she's baking. When I mentioned it to her she had a response that made me laugh:

"Yeah I'm sure I'm covered in a fine layer of gluten at all times, but as long as you don't lick me you're probably safe."

squirmingitch Veteran
squirmingitch
Posted

Well that particular friend certainly has a good attitude. Made me laugh too. :lol: One needs friends that make us laugh. 

Jenny0409 Rookie
Jenny0409
Posted

This post in itself made me feel a bit better. I felt really silly for feeling like I needed to grieve this. I feel like I'm still slightly in denile. I spend on average an hour a day trying to find an explanation to why my blood tests could be wrong in showing that I'm likely a Celiac. (Declining the endoscopy for now due to financials. Docs are pretty sure I am a Celiac based on blood and history and have instructed me to live as though I am) I don't want this and as I'm sure no one does. My husband says it bothers me so much because it's out of my control (I am known enjoy control over my life and circumstances :) ). I think he's right! 

bartfull Rising Star
bartfull
Posted

Ah but that's the beauty of having celiac! You ARE the one in control of your diet, and therefore of your health. If you had cancer or even a virus, you would not be in control and even your doctor might not be in control. With celiac, if we are careful we can control every thing that goes in our mouths and if we do that we are completely in charge of our own health.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Truer words were never spoken. 

Jenny0409 Rookie
Jenny0409
Posted

That's an excellent way to view these circumstance and also allows me to fuel my inner control freak! HAHAHAB)

I like it! Thanks for that!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748
    Mhp
    Newest Member
    Mhp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Help I’m cross contaminating myself,

      By Wheatwacked · Posted

      The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review
    • Wheatwacked
      Bitters for digestion?

      By Wheatwacked · Posted

      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      Bitters for digestion?

      By AnnaNZ · Posted

      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Bitters for digestion?

      By AnnaNZ · Posted

      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
×
×
  • 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.