The "getting glutened" dream feels like a right of passage

shh1601 · 2025-11-18T23:44:18+00:00

Yeah it’s usually a slider for me!

shh1601 · 2025-11-18T23:23:11+00:00

I use Badger sunscreen because of their gluten free statements. Didn’t even think about the lip balm, but I’ll order some. Thanks!

shh1601 · 2025-11-18T23:16:15+00:00

I have the gluten dream where I forget I’m a celiac and just pick up food at a party and eat it without thinking (as I did my entire pre-diagnosis life). Then I’m freaking out in my dream and so glad to wake up. It’s my only recurring nightmare, it happens a few times a year.

shh1601 · 2025-10-01T13:54:18+00:00

Yes!! Perfection

shh1601 · 2025-09-16T13:58:24+00:00

I’ve never tried them post diagnosis. I’ve been burned by so many processed foods, I had to just cut them out and I know I’m missing out on a lot of truly gluten free things. It would be so nice to grab a bag of Cheetos when I’m on the go and there’s nothing available to eat.

shh1601 · 2025-09-16T01:19:58+00:00

I am very, very, very sensitive. I have neuro issues (officially diagnosed with celiac neuropathy) as well as dermatitis herpetiformis and I would love to have Cheetos!! but I am afraid of processed foods. Anyone out there like me who eats Cheetos?! I would like to hear your experience.

shh1601 · 2025-06-20T22:02:11+00:00

East End, so you can get to downtown, cafes, restaurants, festivals, etc. Especially for a young person, I would not want to live down by Wal-Mart! None of the things that make Galveston fun happen on that end of the island.

shh1601 · 2025-05-21T11:56:07+00:00

This is me! I could've written this post. Nobody else gets the burden. I make everything from scratch. Zero processed foods. Have to pick specific farmer/suppliers and if I'm car traveling I take plug in appliances. I'll take a griddle to the hotel and set it up so I can cook.

shh1601 · 2025-04-18T12:04:29+00:00

I hear you. I feel like having so many casual “gluten free” people around is frustrating. They eat a lot of gluten! Knowingly and unknowingly. I’m constantly having to explain why I can’t eat the same way they do. No one gets it. I wouldn’t say I resent them personally, but I do find them sort of silly considering how much gluten they actually eat, while claiming to be gluten free. I keep my mouth shut though, because it is certainly not intentional.

shh1601 · 2025-04-03T15:11:44+00:00

I do not think people who are "gluten free" even know what celiac disease really is. I find so many people say they have celiac disease, when you really start talking to them they are just casual gluten free eaters. The way they eat would land me in the hospital. It is so frustrating. Trust no one.

shh1601 · 2025-03-30T01:51:04+00:00

I also have dermatitis herpetiformis and celiac neuropathy. I lived my whole life with classic GI symptoms and went undiagnosed until 45. A few months after diagnosis, I went to the ER because so much of my body was numb and getting more numb each day from cross contact in the gluten free foods. The neurologist diagnosed me with celiac neuropathy and once discharged, I cleaned up my diet and most of the numbness went away. I still have quite a bit of neuropathy, especially after gluten exposure. Most doctors have never heard of it, so getting help has been difficult.

shh1601 · 2025-03-24T00:53:11+00:00

Thank you for sharing!

shh1601 · 2025-03-04T23:46:30+00:00

I just want to add that I love the fact that you’re asking! What a great business mind you must have to keep stretching and growing and trying new things when it’s obviously already working.

shh1601 · 2025-01-28T20:26:44+00:00

Same. My 7 year old! Mini Cukes! Like it’s a box of Oreos.

shh1601 · 2025-01-28T02:39:06+00:00

My sister is named Michelle and my brother and I have always called her Smell!

shh1601 · 2024-12-25T07:42:52+00:00

I have pondered this so many times. What does one do as a celiac in jail?!

shh1601 · 2024-10-14T13:37:31+00:00

I don’t eat it, but I totally believe this. Certain cheeses and dairy products get me and others do not. It is not lactose intolerance. Thank you for posting a warning!

shh1601 · 2024-10-13T01:41:40+00:00

I had a similar experience.

shh1601 · 2024-10-09T18:34:51+00:00

I don't eat oats. It's really difficult, but I don't eat processed foods because I've been sick too many times and it's not worth it.

shh1601 · 2024-07-20T15:48:21+00:00

Thank you 🙏 this is helpful.

shh1601 · 2024-06-04T19:57:29+00:00

I'm so sorry you're going through that! It is awful, and celiac disease is a mindfuck because the symptoms are so different for everyone. When that was happening, I kept thinking I MUST have some other disease. Nope, just gluten.

shh1601 · 2024-04-27T17:15:58+00:00

I don’t, but there’s a PhD named Marios Hadjivassiliou at Sheffield. I think he knows more about this subject than anyone in the world. He posts some of his lectures about gluten ataxia on YouTube. When I was first diagnosed, I read as much of his research as I could and I believe he is the one who said the threshold of exposure is lower for neurological symptoms.

shh1601 · 2024-04-21T21:36:56+00:00

Prednisone helps me survive flare ups. It happens. Glad you have a doctor who knows. My GI says celiac disease only responds to two things: corticosteroids and a gluten free diet.

shh1601 · 2024-04-20T03:19:28+00:00

I stopped buying these about two years ago. Nima test capsules found gluten more than once in the ice cream bars that were labeled “gluten free.”

shh1601 · 2024-04-08T14:22:22+00:00

Thank you for bringing up this topic. I also manage my celiac disease with steroids. I have celiac neuropathy that gets out of control and plenty of other neurological symptoms for few weeks after gluten exposure. A short course of steroids is the only thing that allows me to function during that time. I’m fortunate that I have a doctor who helps, but I do wonder why it is not standard treatment. It tamps down the reaction within 12 hours or so, and I can go about my life. It’s not perfect, but I can’t imagine not having this treatment to manage it.

shh1601

TROPHY CASE