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

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
      131,915
    • Most Online (within 30 mins)
      7,748

    marcusdarrell1
    Newest Member
    marcusdarrell1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.