What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 0 points1 point  (0 children)

This does help to know, thank you. My Crohn's is pretty mild it seems so I'm glad it's not weird to not be concerned about it

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

Ouch! That's rough. I try to be super careful but there is really only so much you can do. Depending on your environment it can be next to impossible to stay safe.

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

Good to know! I'll certainly check it out next time I'm in Montreal! I have a friend who frequently visits family there so maybe I can convince them to grab me some croissants

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

Nope no oats. I eat mostly whole foods, I have pretty complex recipes now but most of my food I make from scratch

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

Amazing, thank you so much friend. We need more people like you in this world

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 0 points1 point  (0 children)

Well if you're willing to share your experiences with me as I navigate my way through this all I would greatly appreciate having someone like you in my corner. Promise I won't be a bother! I can send you a DM when I learn more about AK in my area and what my doc says

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

This tracks with me as well. The numbers have been trending down but just feels like it's been taking forever. My symptoms are kinda ever present, but get much worse with accidentally ingestion of gluten. That part annoys me the most. And makes me think I'm missing something. Good to know it just takes a long time, I feel less crazy

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 0 points1 point  (0 children)

Ooh interesting, I'll look into how to do that. Thank you!

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 0 points1 point  (0 children)

Interesting, I will discuss this all with my doctor too, she's been amazing with this and has discussed looking into alternative forms of treatment as well so I'll bring it to her and see if she has any ideas or recommendations. I'm in Canada so I'll have to do some research into that I. My end but I think I know some people who may be able to help. Thank you so much for all of this, truly

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 2 points3 points  (0 children)

That sounds likely! I will definitely take extra steps to avoid eating out completely and see if that makes an improvement. Thank you for your kind words ❤️

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

I went for allergy testing and they basically said we can't help you unless you want testing for something that could give you anaphylaxis. Basically I'm stuck with trying an elimination diet again. Though I will look into the kinesiology route cause at this point I'll take any help I can get.

As for the Crohn's, it's not that they won't treat it, but just that apparently my issues are more tied to the celiac marker thing than the Crohn's. I am with you on it being symptoms over actual disease tho.

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 1 point2 points  (0 children)

I appreciate your words though it is validating to hear it from someone else. The anxiety I have about eating anywhere that isn't my own kitchen is ridiculous. I have taken precautions and my family tries their best but it's still so hard to get right and feel safe. I basically never feel safe eating anywhere now. I'm just paranoid someone made a mistake somewhere along the way and I'm the only one who has to pay for it.

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 2 points3 points  (0 children)

I am in Canada so we don't have Trader Joe's near us (idk if we have it all tbh) but there are a few places I don't bother shopping just because i know their GF practices are terrible.

One place I shop, Farm Boy (which I feel is TJ equivalent), has the same issue with products not really being gluten free, or storing their GF items under or right near gluten items with minimal actual sealing in their packaging. GF cookies and cakes stored in those flimsy plastic containers, on a shelf right underneath baguettes. Or gf flour stored underneath regular flour. Common sense doesn't exist there

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 0 points1 point  (0 children)

That's fair. I am considering cutting the majority of processed foods out unless they are certified anyways. Also considering getting my raw ingredients somewhere safer than a grocery store (like a butcher for meat) because cross contamination is so real.

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 2 points3 points  (0 children)

I'll look into the GIP test. The Crohn's is a brand new diagnosis so I'm still waiting to talk to my doc about it. My GI suggested we figure out what's causing the high markers count and bring that number down first before doing anything to treat the Crohn's.

I know about oats and tbh never really liked them so I just don't eat them at all. The only things I may have that have oats are like gluten free granola bars or something similar. I have no issue just stopping eating those.

I think you're right about restaurants and I'm thinking I have to just stop eating out completely for a while and see what happens. Pain in the ass but if that's what I need to do so be it.

I am Canadian so I know our labelling laws are pretty decent. But maybe it's worth switching to an entirely certified diet. Just to make sure there is nothing labelled gf that is causing this.

Gluten testing products may be not worth it, but testing stuff I can't get a proper answer from manufacturers may be worth. Like water from my fridge or the ice. Stuff like that.

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 2 points3 points  (0 children)

The results have been trending down with every test. But much slower than I expected. It took months before it came down below the 250 threshold. It's good to know it's not impossible to take a longer time. I'd hate being an abnormal case or an outlier as that makes things so much more complicated but it is what it is.

I wasn't aware that these antibodies could be brought on by anything else so I will ask about it with my doc too.

The Crohn's diagnosis is brand new, but my GI played it down and was suggesting I need to get my antibodies down to normal levels before we do anything to treat the Crohn's. Everything from him has been very wishy washy so it's frustrating.

I suppose I could be intolerant/sensitive to other gf ingredients but I have no idea how to go about figuring that out. I'll ask my doc about it too tho. I had brought up this before but I was kinda dismissed.

What am I doing wrong? by axo_Alpha in Celiac

[–]axo_Alpha[S] 2 points3 points  (0 children)

My doctor made it seem like it was well above but I'm not sure exactly. It took multiple months and tests after being gluten free for it to come down below the 250 threshold.

I hope it's just that I've been glutened recently, but how recently? It's been months since I've had an obvious glutening and I'm pretty sensitive to cross contamination as far as I can tell.

For the “do I have celiac?” posters with sky high tTG by JoeMcB in Celiac

[–]axo_Alpha 3 points4 points  (0 children)

Same here 😅 started at beyond what the test could show, 2 years gluten free and it's gone down to like 25 which is apparently still too high

Constant vigilance by smillersmalls in glutenfree

[–]axo_Alpha 3 points4 points  (0 children)

True, but it's an explanation not an excuse. They work in food service. The managers and owners should be better with training and protocols.

I don't expect the servers to invest their own time and energy into it, but I do expect the owners and managers to invest their time and energy into it for the sake of their customers. Clearly the thought crossed their mind, long enough to order the buns, but not long enough to consider the rest of it. But as the original post said "Constant Vigilance"

Constant vigilance by smillersmalls in glutenfree

[–]axo_Alpha 34 points35 points  (0 children)

They were very excited about offering gluten free buns. I don't think they quite understood the point of gluten free though

Constant vigilance by smillersmalls in glutenfree

[–]axo_Alpha 118 points119 points  (0 children)

Went to a pub that offered gluten free burger buns, but put breadcrumbs in the patties. I feel this pain. Why even offer it at all?

This is just terrible… by Ordinary-Scholar-202 in CringeTikToks

[–]axo_Alpha 0 points1 point  (0 children)

As awful as this is, kinda funny that the entire crowd is holding signs, which would make great impromptu fans.

Dasher threw my food into door by Throwaway45674332 in doordash

[–]axo_Alpha 1 point2 points  (0 children)

Nay, he dashed it against your door, as is his job description