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

New Celiac- Meetings?

Jessica P
 Share

Recommended Posts

Jessica P Newbie
Jessica P
Posted

Hi everyone! I was officially diagnosed with celiac disease in May. My tTg-IgA was 52 initially and is 12 now (11 weeks later). I know I’m doing the best I can with eliminating gluten products and avoiding cross contamination. I’m starting to have more energy thanks to B12 injections and decreasing inflammation. 

My biggest issue right now is the alienation and sadness I still feel. I know I’m lucky to have an autoimmune disorder with a known trigger and that I wasn’t anemic or otherwise very nutrient deficient. 

I just wanted to reach out and see if anyone knows of virtual meetings or in person meetings (North Carolina) for celiacs. I want to talk to people who understand how overwhelming this is at first. Food connects people and I feel like I lost a huge part of my life. It’s worth it to feel better and even though I can rationalize that, it is still so hard most days! 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, Jessica! The social impact of celiac disease is something every celiac finds difficult to cope with. But let me assure you, you will adjust and your family and friends will adjust over time and eventually it will become the new normal.

Have you googled, "Celiac support groups in North Carolina"? I think there might even be a resource on this forum, a list of celiac support groups in each state. 

Congratulations on the progress you are making with eating gluten free. There's a real learning curve in getting to the point where you are avoiding gluten altogether on a consistent basis as opposed to eating a lower gluten diet. Gluten is even found in medications and supplements and the whole phenomenon of cross contamination can keep inflammation smoldering.

Jessica P Newbie
Jessica P
Posted
  • Author

Hey! Thanks for your response. I know this too will change and things will keep getting easier. Today is a hard day.

I’m getting ready for an almost 2 week trip to my home state of CA and it’s my first vacation since diagnosis so I’m considering all the extra things I have to think about for food and meals. Plus, I’ll be sharing a kitchen with gluten eaters. 

I did a google search earlier and I found a national virtual meeting next month and one NC meeting next month virtually as well. Reached out to a friend who was diagnosed 12 years ago to meet up with her

I’ve met with a nutritionist and I’m a nurse so I’m being really careful to have only certified gluten-free products or fresh food right now. Gluten hides in so many products! Thanks again for the tips and encouragement. I’m committed to figuring out how good my body can feel after a lifetime of so many symptoms. 

Scott Adams Grand Master
Scott Adams
Posted

Just FYI we do have “Clubs” in this forum, and anyone is free to start one. You can start any type of club you want, but the broader the scope the more possible people would join.

https://www.celiac.com/clubs/

Jessica P Newbie
Jessica P
Posted
  • Author

Thank you! I’ll search through them! 

trents Grand Master
trents
Posted

It's overwhelming at first, isn't it! Just think, the next trip you take you have that food list already made up. Be prepared for the skeptical reactions you will get from some family and friends who just don't understand and don't want to. There are always hold outs.

  • 3 weeks later...
Kwx525 Apprentice
Kwx525
Posted

Just curious. You had a follow up 11 weeks later to retest your levels? Were B12 injections prescribed or something that was recommended?

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

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted
On 8/13/2021 at 11:24 PM, Kwx525 said:

Just curious. You had a follow up 11 weeks later to retest your levels? Were B12 injections prescribed or something that was recommended?

I'm not sure if the original poster has seen this.  But with regard to B12 injections, I wasn't offered any by the doctor that diagnosed coeliac disease but my nutritionalist who saw my blood tests said she was surprised that I hadn't been offered them as my levels were only borderline normal.   

This is a useful thread from the National Health Service in the UK:

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/treatment/

In my case I was able to get my levels up to a good level by taking sublingual tablets which deliver very high doses of B12   Injections aren't always necessary, as the thread explains.  

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748
    kyle68j
    Newest Member
    kyle68j
    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

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...