Celiac support is hard to find

[tiffanygosci]

I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me.

I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC.

I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs).

I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating.

Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.

[tiffanygosci]

EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.

[cristiana]

Hi @tiffanygosci

Well done for reaching out,  fantastic you have found this forum.

It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.    

I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below.

I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too.

That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family.

If you have any more questions, we're here for you. 

I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help?

* https://vimeo.com/486284734

Cristiana 

 

 

Edited January 5 by cristiana

[Scott Adams]

I am so glad you found this forum and shared your journey. Hearing about your experience navigating those major food holidays so soon after your October diagnosis truly highlights your strength and resilience, even through the inevitable learning curves with cross-contamination. It's normal to feel isolated, especially when in-person support seems scarce in your area. Your idea to reach out to your GI and dietitian at NW Medicine is an excellent one, as they often have knowledge of local resources or even virtual networks. It’s wonderful to hear you’ve already secured a connection point with the Celiac Disease Foundation’s Zoom meeting and the podcast—those are fantastic steps toward building your community. Your feeling that celiac can be uniquely isolating is so true, but be sure to know that you are not walking this path alone. This community is here for you, and I sincerely hope that as you continue to reach out, both virtually and through your medical team, you will find more of the personal, local connections you’re seeking. We’re all in this together.

[tiffanygosci]

On 1/5/2026 at 7:08 AM, cristiana said:

Hi @tiffanygosci

Well done for reaching out,  fantastic you have found this forum.

It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.    

I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below.

I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too.

That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family.

If you have any more questions, we're here for you. 

I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help?

* https://vimeo.com/486284734

Cristiana 

 

 

Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.

[jenniber]

same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)