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New Celiac- Meetings?

Jessica P
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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! 

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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.

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Jessica P Newbie
Jessica P
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Posted

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. 

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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/

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Jessica P Newbie
Jessica P
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Posted

Thank you! I’ll search through them! 

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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.

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  • 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?

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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.  

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