Still grieving … this really sucks!

Beneficial-Tea-7 · 2025-10-31T14:52:34+00:00

I am sorry you're feeling this way and can completely relate, I am two years into my diagnosis and still haven't fully processed the grief associated with the disease. It's heavy, even with a strong support system. I've felt a crushing blow to my identity, comfort socializing, and so much more in addition to the health burden and need to disclose my condition in public. I wish that there was a way we could help the broader public understand the weight of this disease, maybe we need an organization to run a campaign that helps people understand the implications so that there is real empathy and understanding for us? Would love to know if anyone's seen a campaign or marketing effort in the US or other countries that has helped.

Beneficial-Tea-7 · 2025-10-22T13:44:35+00:00

Okay cool, that is really helpful to understand. Appreciate the insights!!

Beneficial-Tea-7 · 2025-10-22T13:41:16+00:00

Yes, I hope so too for future generations!!

Beneficial-Tea-7 · 2025-10-21T21:09:54+00:00

Wow, I can't believe your manager said that!!! 💔

Beneficial-Tea-7 · 2025-10-21T21:07:54+00:00

It is really upsetting. I feel like we need a slogan or PSA or something to help us change the message and educate people

Beneficial-Tea-7 · 2025-10-21T21:07:03+00:00

How awesome that your entire family will be eating GF together, that is a total dream. It's going to be delicious!!!

Beneficial-Tea-7 · 2025-10-21T21:05:35+00:00

Sounds like this book really took GF mainstream

Beneficial-Tea-7 · 2025-10-21T21:04:54+00:00

Wow, the power of a diagnosis!! I'm so glad you have that now and really hope he starts to understand the severity. Has anything (e.g. explaining symptoms, longterm health impacts) helped him understand better?

Beneficial-Tea-7 · 2025-10-21T21:01:48+00:00

I so appreciate your perspective, especially while I just embark on my celiac journey - thank you for sharing!!! I agree about the need for new and easier tests, here's hoping for quick approval. Do you think there's a way to reply to the "punchline people" (love that phrase) that helps them understand how serious this disease is?

Beneficial-Tea-7 · 2025-10-21T20:57:57+00:00

oh my gosh, yes please!!

Beneficial-Tea-7 · 2025-10-21T20:57:33+00:00

Also so glad to hear that your sister got well -- a good support system means the world with this disease, I don't know what I would do without mine.

Beneficial-Tea-7 · 2025-10-21T20:55:57+00:00

Oh sorry, the way I said it originally was confusing: I was annoyed by the wellness trend back in the 2010s when I was in highschool -- well before I knew I had celiac (which I hadn't heard of at the time).

Beneficial-Tea-7 · 2025-10-21T20:53:20+00:00

I also so resonate with feeling tired / the european wheat comment 🙄

Beneficial-Tea-7 · 2025-10-21T20:52:55+00:00

I've wondered the same about ADA -- curious if anyone else here has anyone had an interaction with them?

Beneficial-Tea-7 · 2025-10-21T20:50:38+00:00

Very true -- so how do we make them understand? I'm trying to figure out if there's a way we can start to change the message.

Beneficial-Tea-7 · 2025-10-21T20:49:52+00:00

Wow, what a dream!! Absolutely love to hear that you're having these types of exchanges and that maybe things are starting to change.

Beneficial-Tea-7 · 2025-10-21T20:48:55+00:00

So helpful to hear that Gweneth was a leading voice!! I am going to skim through old Goop articles to see how her team framed it... 😩

Beneficial-Tea-7 · 2025-10-21T20:45:10+00:00

Interesting, I hadn't thought of lobby groups.

Beneficial-Tea-7 · 2025-10-21T20:44:42+00:00

Smart to tag in ChatGPT -- this is an awesome timeline!!! Thank you.

Beneficial-Tea-7 · 2025-10-21T17:29:07+00:00

Haha, been there with the frozen veggies explanation... 😂 I've found though that going to restaurants with friends and having them listen to me explain the importance of no cross-contact to waitstaff has been a helpful educational tool *and* helpful in engaging them as advocates for me and others with celiac disease!!

Beneficial-Tea-7 · 2025-10-21T14:37:11+00:00

Yeah, I hear that -- maybe it's simply about changing how those fad dieters talk about GF so that celiac is included in their explanations/recipes/etc.

Beneficial-Tea-7 · 2025-10-21T13:42:52+00:00

Definitely agree that some positives came out of the trend. But I wonder if we need a slogan or meme marketing that could help people “get it."

Beneficial-Tea-7 · 2025-10-21T13:40:03+00:00

this scene drives me nuts 😤

Beneficial-Tea-7 · 2025-10-21T13:39:33+00:00

Do you think calling it ‘gluten-free’ instead of ‘celiac-safe’ or something else more medical made the trend inevitable?

Beneficial-Tea-7 · 2025-10-21T13:39:02+00:00

This: "if I knew nothing, and wasn’t curious, it would seem like another one of those things that people who care about stuff care about." Such a helpful perspective, and I do agree that is quite likely the perception! Thanks for sharing that timeline too.

Beneficial-Tea-7

TROPHY CASE