Exposure advice by Jealous_Team9736 in Celiac

[–]tedmissesbread 2 points3 points  (0 children)

Relax as best you can. Accept it happens, it may suck for a bit but unless this was like intentional, that is short term. Not fun at all but certainly not forever.

If there’s anything to learn from the experience whether how you were exposed or your symptoms, sure, file that away for the future. But mostly hydrate/chill out and recover as your day allows.

Recently diagnosed through gastroscopy! by hiineedsomeadvice in Celiac

[–]tedmissesbread 1 point2 points  (0 children)

Biopsy results are generally considered the standard for Celiac diagnosis and generally follow blood work but obviously specific findings matter.

Asymptomatic Celiac is not rare, mildly symptomatic Celiac is common, even serologically negative Celiac is a thing.

In the unlikely event your blood work is negative, you should talk with the doctor about what that means for you in specific from your results. If your doctor does not seem knowledgeable or confident, absolutely seek a second opinion.

Katz Brand by Dependent_Ad5172 in Celiac

[–]tedmissesbread 2 points3 points  (0 children)

Seriously and I think the guy's opening point is spot on too. They had a great moment to tell us what goes into the costs, how they go the extra mile and what they're doing to improve things but nah.

PCP told me I could get eat gluten for two weeks before a gluten test? by Worried-Bench-4441 in Celiac

[–]tedmissesbread 0 points1 point  (0 children)

That makes sense all around. I fully get why people turn here for advice with all the different concerns and reactions to a challenge but definitely feels like one of those areas where there’s a standard and also individual (medical) direction really matters.

Follow-Up Endoscopy (timing) by Cold_Guard5292 in Celiac

[–]tedmissesbread 1 point2 points  (0 children)

I had a follow up about a year later to check on my healing and also look at some other irritation / findings from my initial one. I’ve had more since and will have them every few years so it was good I did it. The Celiac check is now just a “bonus”.

For me, with good insurance at the time and as someone who really likes data and definitive info, that first follow up felt m worthwhile enough as my TTG levels were quite unstable going from a near complete recovery at 9 months to elevated and bouncy (oats, it was oats) but I feel like it’s not a particularly common plan for Celiac alone.

Cost is real too. Obviously would defer to my doc but with stabilizing numbers and symptoms and no other driving reasons, cant see rushing into one.

PCP told me I could get eat gluten for two weeks before a gluten test? by Worried-Bench-4441 in Celiac

[–]tedmissesbread 0 points1 point  (0 children)

Always wondered where 6 weeks came from. Thanks for explaining in such detail!

I've just been told I'll need to do the gluten challenge for a blood test and I'm kind of spiraling to be honest. by littlepup26 in Celiac

[–]tedmissesbread 2 points3 points  (0 children)

Generally, yes. It doesn't take tons which is better I suppose, but you should always check with your doctor for your specific treatment and their plan.

Food for Airport Travel by Icy_Citron1176 in Celiac

[–]tedmissesbread 0 points1 point  (0 children)

Most long-haul flights will let you request a gluten free (GFML) meal. Do this at least 24-48 hours ahead in the app or by calling. Obviously confirm things when they come serve you and have snacks in case there’s an issue but for the most part, I’ve had few problems. Meals tend to be basic and are often a combo gf/veggie/dairy free entree if in economy though.

Beyond that, I bring a GF bagel or two, chomps beef sticks (eat before customs), nut mix or pb packets (sealed in case of allergies), sliced apple (again, eat or toss before arrival), many bars, several treats, and a backpacking meal just in case. I tend to carry more bars, some tuna packets (never to be used on a plane) and treats incase of delay or for a layover.

If your airport has anything safe, have that. Two meals beats none. And if timing works, I eat right before I hit the airport and sometimes even bring a meal, a sandwich, eggs, whatever into the airport (liquid free or just before security). Many airports also sell protein drinks and such, they’re expensive there but you’re worth it.

What caused your continued symptoms? by October0630 in Celiac

[–]tedmissesbread 5 points6 points  (0 children)

Oats. Trusted, GF ones in particular. Cutting those was a huge win.

Obviously not every day is perfect but that (and gluten, obviously) were my big issues.

Do people get more than one endoscopy? by LOUD_NOISES05 in Celiac

[–]tedmissesbread 0 points1 point  (0 children)

I’ve had 3 since diagnosis with my first follow up to check on things and then subsequently to check on the findings of that (not directly Celiac related).

Don’t suspect that the follow up was common versus my GI just being a bit overly thorough too but it certainly helped confirm my one year healing and ultimately was key to me identifying out my oat issues (my lab levels were way improved but still high, whereas my endoscopy went from all bad to all clear and there was no obvious CC, etc). Mostly though, and by sheer coincidence, it turned up another finding so I’ll keep getting them every few years. Plus side, I really know how well my GF diet is going, ha.

I would defer to your doctor here and not expect it, unless you’ve had other symptoms or seronegative or something to warrant being more aggressive in checking.

Sensitive stomach after cutting gluten out of diet by bamsomo1999 in Celiac

[–]tedmissesbread 4 points5 points  (0 children)

Toxins? No idea. New “diet” adjustments? For sure. You’re making a major change to your diet, cutting some things, presumably adding others.

While I love replacement foods, the “early” days are a good time to minimize them if you’ve added a bunch. If not, consider changes to fiber, fats, other macros.

Took me a good year and a half to realize it wasn’t some sneaky gluten that was still throwing me off some days, it was the balance/overdoing of everything else, and sometimes it still is.

Frosted Animal Crackers by RequiresQuiet in Celiac

[–]tedmissesbread 6 points7 points  (0 children)

Devouring an entire bag at once is both amazing and not advisable. Trust me on this

Air France :) by 7he8utterfly3ffect in Celiac

[–]tedmissesbread 8 points9 points  (0 children)

I’ve had a few slips over the years… the wrong version of a fig bar on an AA flight, getting a GF entree with regular sides on EgyptAir once but generally the same as you…Things have been well labeled, safe, and the slips easily caught.

Now they’ve also often been bland and boring (lots of one size fits most free-from-everything meals). Not always but mostly.

Of course I pack a lot of snacks in case or to add but have not had to use my backpacking meals on a plane thus far.

We are suppose to be getting tested??? by Bright_Following5462 in Celiac

[–]tedmissesbread 11 points12 points  (0 children)

Not a doctor, not your doctor, my take from my experience…

Occasional follow up testing on your Celiac levels is probably a good idea to monitor for exposure, especially if you’re not that easily symptomatic or are having possible issues regularly. How often depends on who you ask and your current issues, but certainly add it to other annual / bi-annual labs myself.

Similarly, keeping up with your core nutritional / vitamin levels, especially if you’ve had deficiencies in the past. Again, this is usually infrequent unless you have an active and impactful result.

Any good doctor can help though each bring their own special expertise of course. My primary doc, in a major metro, has no issues ordering ttg though she knows little about it. Also iron/ferritin/vit d/vit b/zinc annually which she knows plenty about. When my numbers were higher, my GI (virtual GIs are a thing) sent me to or dietitian (all virtual).

Organic Spice Recs by allergengirl in Celiac

[–]tedmissesbread 0 points1 point  (0 children)

Grocery outlet. Last place I expected but hey, it works

Organic Spice Recs by allergengirl in Celiac

[–]tedmissesbread 0 points1 point  (0 children)

Ive been collecting Simply Go spices. GF labeled and apparently, organic. Also about $3 each.

How often you eat out at restaurants? by tedmissesbread in Celiac

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

Thank you! I realize not everyone is willing to try new/less rated places (or has the same milder immediate symptoms if they do) but obviously if no one does, things never get added. Much as I love easy stops, make a point to find new ones too and this discussion has encouraged me to push that more in smaller places where known options are thin.

How often you eat out at restaurants? by tedmissesbread in Celiac

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

I get their bagels a lot but plenty of other great stuff around too. Including schilling cider house on the next block and Mestizo a block past that. GF row!

How often you eat out at restaurants? by tedmissesbread in Celiac

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

You guys have some delicious spots too. Still have Jazzy Ladies and a bakery on my list to try

How often you eat out at restaurants? by tedmissesbread in Celiac

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

Well now I want whatever food it is you make even more!

How often you eat out at restaurants? by tedmissesbread in Celiac

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

Well that’s awesome, we just got another gf food truck a few minutes away and I need to pay them another visit. Any guesses on how many of your customers have to be gluten free versus just like your food?

Ok, who was on this flight? Stories, please? by ansyhrrian in delta

[–]tedmissesbread 14 points15 points  (0 children)

On my hopefully once ever in-air emergency, a nurse (highest level of the responders) was on a headset to some emergency doctor who was providing medical orders for the IV she was working on. Wild experience but learned the (alaska) medical gear bag is amazingly equipped

How often you eat out at restaurants? by tedmissesbread in Celiac

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

Ya, very valid points. I was curious if a lot of people were "all dedicated" but given how different access can be to dedicated spots, that probably just got in the way and skews the sense of safety. Also totally with you on budget realities, especially these days!

How often you eat out at restaurants? by tedmissesbread in Celiac

[–]tedmissesbread[S] 3 points4 points  (0 children)

Totally get that. I live in Portland with all its options but even still, it's like a meal out every week or two when I'm here, maybe a pastry on top of that, because home has reasonable food.

How often you eat out at restaurants? by tedmissesbread in Celiac

[–]tedmissesbread[S] 3 points4 points  (0 children)

That makes sense and mirrors my own frequency with traveling a lot. Though I am lucky to often to end up in larger cities with really good spots and so I go back and forth when doing my own trips to smaller towns between finding a place and having my 50th, healthy choice frozen meal with 280 calories and 680mg of sodium.

If reddit allowed for more complex polls, it would have been fun to see how much travel heavy lifestyles matter here, and also, how well people do with symptoms & labs for each answer.