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

The next acceptance battle


Galixie

Recommended Posts

Galixie Contributor

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

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

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

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

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

Jenny0409 Rookie

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

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

Truer words were never spoken. 

Jenny0409 Rookie

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,984
    • Most Online (within 30 mins)
      7,748

    henrygreen
    Newest Member
    henrygreen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...