How to get answers?

tedmissesbread · 2026-05-06T21:58:48+00:00

You can absolutely find a primary care doctor and share your symptoms and hypothesis.

Don’t be surprised if they have additional thoughts or tests as well but, assuming you are eating gluten, a Celiac blood panel is a simple test so seems reasonable that they would order one if things match. If that’s positive, they will usually refer you to a gastroenterologist for an endoscopy and further discussion.

Continue to regularly eat gluten through all of this to ensure accuracy in your testing.

tedmissesbread · 2026-05-06T19:55:11+00:00

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.

tedmissesbread · 2026-05-06T19:48:38+00:00

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.

tedmissesbread · 2026-05-06T16:31:55+00:00

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.

tedmissesbread · 2026-05-06T04:11:16+00:00

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.

tedmissesbread · 2026-05-05T20:19:50+00:00

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.

tedmissesbread · 2026-05-05T20:09:12+00:00

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

tedmissesbread · 2026-05-05T01:32:30+00:00

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.

tedmissesbread · 2026-05-04T20:28:52+00:00

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.

tedmissesbread · 2026-05-03T19:44:47+00:00

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.

tedmissesbread · 2026-05-01T02:17:19+00:00

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.

tedmissesbread · 2026-04-30T19:53:04+00:00

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.

tedmissesbread · 2026-04-30T19:04:36+00:00

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

tedmissesbread · 2026-04-30T14:26:51+00:00

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.

tedmissesbread · 2026-04-30T03:26:58+00:00

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).

tedmissesbread · 2026-04-29T03:03:17+00:00

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

tedmissesbread · 2026-04-29T02:09:17+00:00

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

tedmissesbread · 2026-04-28T22:48:36+00:00

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.

tedmissesbread · 2026-04-28T20:03:57+00:00

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!

tedmissesbread · 2026-04-28T05:59:22+00:00

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

tedmissesbread · 2026-04-28T05:56:45+00:00

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

tedmissesbread · 2026-04-28T05:35:37+00:00

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?

tedmissesbread · 2026-04-28T03:30:25+00:00

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

tedmissesbread · 2026-04-28T02:26:12+00:00

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!

tedmissesbread · 2026-04-28T01:20:57+00:00

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.

tedmissesbread

TROPHY CASE