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

Catching Up. Some Advice And My Thoughts.


LilyCeliac

Recommended Posts

LilyCeliac Rookie

Hey Everyone!

I was diagnosed this summer and now that I have had a few months to adjust to the new lifestyle I am realizing alot about this disease and also alot about myself.

I am still feeling sick but I have noticed some improvements to my health.

I still have a long way to go and there are so many things that I could be doing better.

For starters I really need to eat more vegetables, fruits, and drink more water. I need to cut down on the junk food and I think this will help alot. For a while I was still eating alot of junky foods that are gluten free to make up for all the foods that I can no longer eat. But, after I am finished eating the junk food I normally don't feel well and regret it. Sure I wont cut yummy junk foods out 100% but for a while I'm gonna try really hard to cut back ALOT!.

Also, I always feel alot better whenever I am working out. Alot of times I feel too weak and tired to work out but even if i can fit in a half hour a day it makes a huge difference, my joint pain disappears and I feel more awake. I finally feel like I have enough energy to start going to a gym again so I'm excited to get started on that.

I'm so sick of this disease interfering with my life and I'm finally ready to do everything possible to get better. I'm sick of always wanting to stay home out of fear of getting sick or having to run to the bathroom. I don't want this disease to hold me back.

I have finally found a bread that I enjoy after trying a few different kinds that were DISGUSTING!. I was missing Pizza alot and I finally found a pizza crust that actually tastes normal!. I recently baked my first Gluten Free cake which was delicious! Noone even knew it was gluten free! It's can definitly be a fun learning process.

I find that people are always interested about the disease and have alot of questions about it and I am always happy to discuss it with them and educate them on the disease. I think the more people we educate the BETTER! This disease does not get enough recognition. This is one of those diseases where more awareness would help ALOT! If people who work in restaurants, the food industry, and in customer service knew more about this disease we wouldn't have to worry about accidentally eating something that really isn't gluten free. We wouldn't have to be so paranoid all the time. I get so frustrated at how little people know about this disease! I didn't even know it existed before I was diagnosed. Even Doctors can't provide us with the information and piece of mind we need.

I just wanted to write this and get out some of my thoughts and express how much I feel for all of you with this disease going through the same things that I am going through.... Alot of times when I feel let down by my Doctor and frustrated with people who don't understand I think about all of you on this forum and I don't feel so alone anymore. I know that I'm not alone. When I was first diagnosed at times I was a complete mess about it all and relied alot on reading everyones posts. This is where I gained most of the valuable knowledge I have learned about Celiac Disease, from people who have it and who have been through it too. So if theres anyone out there that has just been diagnosed or is having a moment of weakness (which we all do sometimes), I hope you know that your not alone, and things will get better.

Anything that holds you back in life is always so hard to deal with and thats what this disease can do. It can hold you back from doing things you want to do and going places that you want to go. Which is why we need to be smart and we need to open our eyes. We need to be doing everything we possibly can to make ourselves better because it is possible. With a positive attitude anything is possible. It may not happen right away but you are on the right path if you face the reality of this all.

I myself really need to get serious about this disease. The last couple months have been the learning process and now I am ready for the Acting Process.

Wish me luck! haha

Love you all!

xoxoxo


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Thank you Lily. I think your letter is very inspiring, especially for newbies. I hope they read it. It says it all. :D

aikiducky Apprentice

I really like your attitude about this! Thank you for posting. :)

Pauliina

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ognam replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increasing symptoms after going gluten free

    2. - Scott Adams replied to Den Copper's topic in Gluten-Free Restaurants
      1

      Chili's Gluten-Free Dining Experience – What’s Your Take?

    3. 0

      Tampere, Finland Celiac Disease Symposium 2025

    4. - Nicbent35 replied to Nicbent35's topic in Related Issues & Disorders
      7

      3 year old gluten intolerance?

    5. - trents replied to Nicbent35's topic in Related Issues & Disorders
      7

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,941
    • Most Online (within 30 mins)
      7,748

    ognam
    Newest Member
    ognam
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Although it is true that FDA regulations don't require gluten to be included in allergy info, it does require wheat and ingredients made from wheat to be listed. Of course, that doesn't preclude gluten from barley being found in a product.
    • ognam
      I had a lot of weird/random symptoms for a few months after going gluten free. But eventually they evened out and I felt SO MUCH BETTER. The person above wrote a very detailed message that looks helpful. I'd add don't forget to check for gluten in places like medicine. Advil liquigels, for example, have gluten. It's very frustrating trying to figure out if things are gluten free as us law doesn't require it to be declared. The only labeling rule is that if the product says gluten free, it must have less than 20ppm gluten.
    • Scott Adams
      You had the wrong link to the menu, so I fixed that for you 😉. Trying to eat gluten-free at Chili's is risky due to cross-contamination, even if you go with items marked gluten-free on their menu. Every person with celiac disease has a different level of sensitivity, and you've not mentioned anything about your situation in that regard. Whenever I eat out I take GliadinX (a sponsor here), but of course, the best option would be to avoid eating out. 
    • Nicbent35
      She has had problems with constipation, they actually prescribed miralax for her but I have changed some other things about her diet that seemed to have helped, so I never gave it to her..but she still doesn’t always go daily 
    • trents
      @Nicbent35, are there any other symptoms besides altered mood when your daughter gets "glutened"? Behavior like that in children often belies physical discomfort of some kind. Does she complain of stomach aches? Is she constipated?
×
×
  • Create New...