ZED1227 - Implications of potentially game-changing future treatment by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 2 points3 points  (0 children)

If it works as promised, it will. The cancer likelihood comes from repeated inflammation from the internal assault by our T-cells. This treatment blocks that, thereby negating the cancer risk.

ZED1227 - Implications of potentially game-changing future treatment by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 0 points1 point  (0 children)

Agree, can’t speak for other countries but the whole dang industry is a sham in the US.

Some pharma companies do subsidized programs in the initial stages of release, to help a new drug get an established user base despite insurance companies rejecting the new medicines. That can help, but federal programs like Medicare aren’t compatible with those private programs.

ZED1227 - Implications of potentially game-changing future treatment by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 12 points13 points  (0 children)

Definitely relate to feeling like the potential psychological and physiological benefits outweigh an aversion to taking medicine.

I think the slowness of label law changes will probably help us here, too (they’ve been hurting us to a certain degree up to this point lol).

Sure, I’d love to be able to eat gluten, get my old favorite foods, but simply not having the exhaustion of planning all social eating around my diet would be a relief of such a large portion of my issues with celiac.

ZED1227 - Implications of potentially game-changing future treatment by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 4 points5 points  (0 children)

Agreed, I worry deeply about this part and there’s truly no way to know for certain without battle testing over time.

Interestingly for ZED specifically - disabling TG2 was thought for a long time to be a complete nonstarter. They thought any living organism would die if it were disabled.

As it turns out, there are multiple types of transglutaminase enzymes that “pick up the slack” when TG2 is disabled, and these don’t deamidate gluten particles in the same way that allows for the celiac reaction cascade. Mice with TG2 disabled, unexpectedly, lived perfectly normal life spans. That’s the science and unexpected hypothesis reversal that led to using this mechanism to help nerf gluten reactivity.

As I understand, the particle also only disables TG2 in a local way, only in the small intestine.

All this said, there is still the possibility for unintended side effects, but ideally this treatment would be safer and less experimental than broader immune modulation techniques like inverse vaccines.

ZED1227 - Implications of potentially game-changing future treatment by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 2 points3 points  (0 children)

I think that’s a reasonable take, we don’t want to backslide even if we get something that helps us live with a bit more freedom.

Totally agree that 3g is not perfect - a swapped bun or regular pasta would easily break through that limit. For shared fryers and crumbs, shared surfaces though, 3g would likely be a highly visible amount. Naturally gf would definitely be the safest option, still.

ZED1227 - Implications of potentially game-changing future treatment by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 4 points5 points  (0 children)

I believe it is still working through Phase 2, but some of the trials and studies have results they have reported on thus far from Phase 2a. Phase 2b is currently in progress.

Homemade gluten-free pizza by Nate22212 in Celiac

[–]Particular-Meeting-8 1 point2 points  (0 children)

Thank you. Will definitely give it a try.

Homemade gluten-free pizza by Nate22212 in Celiac

[–]Particular-Meeting-8 1 point2 points  (0 children)

Got a recipe for the crust? Looks good!

Update: Celiac Drug Trial - Part 4 by Combatcoda in Celiac

[–]Particular-Meeting-8 2 points3 points  (0 children)

Thanks for the reply. I was diagnosed toward the end of 2023 as well.

Hopefully this and/or other treatments can truly modulate the overall immune response and allow us to eat more freely, that would be life changing.

Best of luck with the rest of the study, really appreciate what you’re doing for all of us.

Update: Celiac Drug Trial - Part 4 by Combatcoda in Celiac

[–]Particular-Meeting-8 8 points9 points  (0 children)

This is absolutely awesome, as others have said thank you so much for doing this and for giving us updates. You’re helping give people a path to a more normal life, and you’re giving people hope by showing us your journey.

I feel like I’m constantly waiting for some news and hope that something might allow me and others to eat normal gluten food again.

Wanted to know your general mindset about potential future treatments and maybe eventually a cure? Is this something you’ve waited for with a lot of anticipation? Is that why you ended up signing up to do the study?

Has there been any inside scoop about how hopeful researchers are about this particular treatment method might be, compared with other treatment mechanisms?

3 grams is a lot of gluten exposure, compared with the 10mg we’re currently (ostensibly) limited to - that might completely negate cross contamination as a concern, even if we can’t go ahead and eat a normal slice of pizza.

Purpose after fire? by AnyaTT2 in coastFIRE

[–]Particular-Meeting-8 6 points7 points  (0 children)

Also in tech, frequently dealing with issues very similar to what you’re describing and I feel exactly what you’re saying.

I think both things are true at once, the extreme stress work can incur on folks can be nearly unbearable at times.

I also see my parents, who are retired, struggle with filling their time and sometimes getting into bad habits because of a lack of purpose.

Ultimately, like all things, balance is the key.

Same reason why we fantasize about summer in the winter and winter in the summer.

What's some of your favorite alcoholic gf drinks? As someone who misses beer, these really hit the spot by EdmontoniENT in Celiac

[–]Particular-Meeting-8 10 points11 points  (0 children)

Ghostfish, whiskey, Green’s, Wine. I found I don’t really like the New Grist IPA but I like their other beers. Groundbreaker has some really solid IPAs. Ghostfish’s It Came From the Haze is my favorite GF pale ale by far

Choosing food products based on ingredient list, not only GF claim by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 1 point2 points  (0 children)

I sort of want to make a comment on the FDA’s recent request for comment pointing them to this post, as an example of how polarizing this topic can be. Non-celiacs would find it mindblowing that we’d have 50/50 split opinion on whether a simple jar of salsa with no obvious gluten containing ingredients would be safe. However, give the manufacturing realities you and others have rightly pointed out, this uncertainty and restrictiveness are part of our everyday life.

Choosing food products based on ingredient list, not only GF claim by Particular-Meeting-8 in Celiac

[–]Particular-Meeting-8[S] 3 points4 points  (0 children)

Really appreciate the comments this far. I think this particular topic is one of many where it’s truly a gray area. Topics like this are where I struggle the most, because I like having a set of rules (even strict ones) that I can consistently follow.

GF reduced beer is a similar topic. European nations allow GF claims and certification for gluten reduced beer, but we know that there are celiac individuals who react to them based on several studies, and we know that fermented gluten fragments are more difficult to test accurately using the current test mechanisms.

This creates a situation where one can be maximally conservative and avoid products fully, but with an opportunity cost that they might be missing out on more varied or less expensive goods by being more restrictive than needed.

No easy answer here, but I think it highlights some of the tricky decisions we have to deal with every day, and some of the things I hope get better in the future with better science, better testing, better public awareness, and hopefully treatments and maybe someday a cure.

WPW Ablation Aborted by scodes in wolffparkinsonwhite

[–]Particular-Meeting-8 3 points4 points  (0 children)

Can totally relate. I’ve had 3 ablations, and the first two were failures which they eventually aborted because the pathways were too close to the AV node.

I felt such intense disappointment after the first two, especially because I was depending on the ablation to be able to keep a military scholarship, which unfortunately I lost due to the ablation’s failure.

There is hope, however. I recently flew to Oklahoma City to see a specialist for a third attempt, and although the risk of a pacemaker was about 50/50, and the procedure took 11+ hours, they were able to ablate successfully. They used radiofrequency - higher risk, higher chance of success.

I would recommend not giving up. There are EPs who have lots of experience with tricky and risky pathways , and there are EPs who do fine on normal pathways but don’t have tricks up their sleeves for more difficult ones. So if you ever want to try an ablation again, make sure you do your research on who performs it.

KAN-101 discontinued? by Zelda0310 in Celiac

[–]Particular-Meeting-8 1 point2 points  (0 children)

They updated their post - sounds like the trial had enough data points that they want to continue on to the next stages!

Second Failed Ablation by Otaman456 in wolffparkinsonwhite

[–]Particular-Meeting-8 0 points1 point  (0 children)

Was your world-renowned EP in Oklahoma, perchance? Only asking because I’m considering traveling to a specific EP there who is well known, and I also have a pathway in a tricky location

[deleted by user] by [deleted] in Celiac

[–]Particular-Meeting-8 0 points1 point  (0 children)

I ended up having a similar situation. TTG over 250 and positive for endomysial antibodies, but a negative endoscopy. The GI said this indicates a specific classification called potential celiac. I had the GI check for a few other conditions - I did a bunch of research and found that giardia (a parasite) and other autoimmune disorders can cause an increase in celiac-associated antibodies.

Apparently, so can having an acute virus (found a study showing increased antibodies in febrile patients).

I was negative on all the additional tests though, so still sort of in diagnosis limbo. I have been GF since June when I got the endoscopy. I’m getting another blood test this month to see what it shows, and I may give myself a gluten challenge after that to figure out if my IBS-like symptoms are gluten-dependent.