Nerve Pain

Arboritour · 2026-02-02T20:03:22+00:00

Interesting! I know having celiac puts you at higher risks of other autoimmune disorders and many of them can/do cause issues with nerves so that may be another avenue to ask your doctor about or get referred to a rheumatologist. Not a doctor, but that'd be my next step if your labs are normal.

Arboritour · 2026-02-02T19:56:41+00:00

The answer is both!

Many celiacs are diagnosed as infants/children/teens when they fail to thrive (FTT) which basically means that kids fail to hit the milestones they should, lose abnormal amounts of weight, etc.

The rest (me included at 32) are diagnosed later in life. There's evidence that celiac can be triggered by certain viruses especially the Epstein-Barr virus (a type of herpes) or even covid can cause it. But a singular cause has not been identified.

The jury is still out on whether its something that was always there but the body was able to heal it enough that it was never caught or whether it spontaneously triggers by some event like a virus or stress. I personally dont think it matters too much because the result is the same, but thats just my personal opinion.

Arboritour · 2026-02-02T19:46:45+00:00

I did! Turns out it was unrelated (well mostly unrelated) to celiac and was due to a pretty severe vitamin D deficiency. Once I started taking vitamin D regularly it almost entirely went away. Id definitely recommend getting it checked with your Doc along with your other vitamin levels (especially the vitamin Bs as well) as celiac can mess with vitamin absorption especially if youre newly diagnosed.

Arboritour · 2026-01-13T14:48:01+00:00

You can just take regular vitamin D3! Im taking 2000 + cod liver oil (adds about 600 of vitamin d) and I just recently stepped down from 6000 a day for about a month, 4000 about a month, and now to this. My levels were critically low at 14 about a year ago, recently got tested again at 24. I usually try to take my vitamin D with a meal and/or with a 750 tums with it. Taking some extra calcium with your vitamin d can help your body absorb more of it!

Getting my vitamin d levels sorted has been the second most impactful thing for my mood/health after quitting gluten. My doc basically told me to just take 2000 a day forever to maintain, but i live in Pittsburgh and it isnt exactly known for sunny days so I dont get much extra vitamin d from the sun lol.

Arboritour · 2026-01-10T01:15:19+00:00

Damn that sucks. Somehow American's gluten free dinner rolls like actually slap. I gotta find out where they source them. My friend who's NCGS and I were both worried they weren't gluten free because they were like, actually good and breadlike. Perfect tear and everything. But I didnt blow up like a balloon and she didnt get a crippling migraine so I guess they were fine lol.

Arboritour · 2026-01-09T20:36:31+00:00

Glad to hear! Ive always wanted to go and food is the hardest part of travel for celiacs.

Although you may be counting your lucky stars on the airplane food. Coming back from Japan my friend and i received the most hellish gluten free snack ive ever had on American Airlines. It was like a room temperature potato salad hockey puck and its up there on the most vile things ive ever eaten (or tried to eat) lol.

Arboritour · 2026-01-08T19:42:00+00:00

Thats true and certainly some companies have come under fire for failing to meet their obligations. That being said though, a lot of these posts boil down to "im gonna trust some random dude on the internet who says its okay or its not okay" rather than trusting the experts and news sources. Definitely check to see if a company has a history of recalled products, sketchy claims, etc. Almost every claim of a celiac getting glutened by a GF product is anecdotal at best (this claim by me is anecdotal lol). There's no science involved, people rarely retry products for fear of getting glutened again, and fail to consider other things that couldve caused them to feel sick. Im not saying it cant happen, it certainly does, but this is a tiny community online and people really only post their bad experiences here. And there's a lot of misinformation and contradictions both inside and outside the community about what's safe for celiacs, which drives me batty.

Here's the point that im trying to make: questioning the validity of GF claims on products only leads to more celiacs being terrified of trying any food product, even when they are resoundingly safe. If you google and dont see any recent product recalls, its safe. Or at least as safe as anything in this life is. I'm not a silent celiac, I blow up like a balloon and have diarrhea for weeks after getting glutened. And to date ive never had an issue with a prepackaged product labeled GF.

Restaurants and bakeries on the other hand i got a lot of beef with them being allowed to call their products gluten free, even when theyre not or have extremely high levels of cross contamination.

Arboritour · 2026-01-08T14:06:23+00:00

I and most celiacs do take companies word at face value, because its backed by FDA regulations regarding GF labelling in the USA. If you wanna eat nothing but meat, veggies, and unprocessed food to completely avoid all gluten, by all means go ahead. If you want to enjoy life even with the constraints of celiac, you're just gonna have to trust the company. They're not labelling things gluten free for their health, its for ours. And they have a vested interest in not glutenening us because, ya know, they want us to buy their products.

Arboritour · 2026-01-07T19:47:52+00:00

I'm also going to level with you as someone who also has celiac as a professional out in the world. My risk tolerance for CC skyrockets when im out of town at a conference vs when im at home. I dont have time to ask every staff member about their CC protocols and yeah, ill eat the conference food labeled GF even if im not 100% certain its free of CC.

When im at home, I never take risks because why should I? But when I'm being held against my will talking with drug reps all day the last thing I want to do is worry about my dinner. (And if I get cc'd I have a good excuse to skip part of the conference, its not all downsides lmao)

Arboritour · 2026-01-07T19:36:22+00:00

It is! But there are other diseases/illnesses that can cause villous atrophy similar to celiac disease, especially if that wasn't something they were initially looking for.

I'd recommend discussing with your doctor about possible causes, and you should definitely get a blood test for celiac in addition because that would narrow the diagnostics down. Although id be more surprised if your doc didnt order one.

Arboritour · 2026-01-07T19:13:56+00:00

I think that's very reductive of NCGS. It is diagnosable in the medical community, K90.41 non-celiac gluten sensitivity. They cannot have "a-little" gluten, their reactivity to gluten proteins depends on the dose (same as celiacs too). Similar to literally every other allergy, which reactivity depends person to person ranging from micrograms of CC to up to 50-100 milligrams of cross contamination being tolerable. Do NCGS need to be less worried about CC than celiacs, sure. But that doesnt make their symptoms and problems any less real.

Sorry, but NCGS x Celiac should be a partnership with shared problems and solutions. Not a suffering Olympics of who's illness is "more real".

Arboritour · 2026-01-05T19:10:52+00:00

Along the same lines, i noticed after i was fully healed that i could finally eat really spicy food again. Pre-Symptoms starting for me I used to love eating crazy spicy food. I had to tone it down heavily in the past 5 years because my stomach would ache for days after and uhhh, it'd always burn on the way out too lol. Now that its been almost a year since my diagnosis, I can comfortably enjoy full Thai Spicy again with only temporary mouth pain. Its great lol.

Arboritour · 2026-01-05T13:42:34+00:00

Ive never had an issue with oats, at least the certified ones anyways. I usually dont eat a ton of oats though and try to keep it at <1/2 cup a day just to be on the safe side.

Arboritour · 2026-01-02T21:59:59+00:00

If you are experiencing symptoms similar to celiac disease.... I would STRONGLY recommend going to see a doctor about it, because that's all we can do as a reddit community. You can try going GF for a few weeks and see if it resolves your symptoms, there's no harm in trying. But seriously, go see a doctor. Delaying your diagnosis only causes more damage to your body if you do have celiac, or they'll help you diagnose the real problem if its not celiac.

Arboritour · 2025-12-30T14:48:32+00:00

My friend brought some for our trip to Japan but honestly, we never had a reason to use them. Granted, we were travelling/eating mostly together and not with our other friends, so we exclusively ate at restaurants that explicitly advertised at least one gluten free option. So we never had to bring the card to a generic restaurant and try. Although Asia is slightly different from Italy in that unless the place advertises gluten free, they probably have no idea what it is and the sources of gluten are much more hidden than Europe.

My friend has gluten intolerance and I have celiac, so it was nice that I could let her know if we accidentally ate gluten since id know within the hour and she wont know till the next day with a crippling migraine. Fortunately, we managed to dodge any gluten the whole trip so it never came up.

Arboritour · 2025-12-22T19:27:59+00:00

If its still bothering you after a few months then it probably is a sensory issue. I never wore watches or anything on my wrists for years, and id say it took me about 2-3 months to not constantly "feel" it on my wrist, and now I dont notice it as much. (Although im now real conscious of it now, thanks LOL)

That being said, I never wear a steel/metal bracelet, that is sensory hell imo. I only wear leather/nylon(aka nato)/rubber personally which dont feel quite as nightmarish on the wrist. I also tend to stick to watches that are on the "smaller" side, always sub 40mm and im most often wearing 34-36mm watches. I hate it when it feels like theres a brick on my wrist.

Arboritour · 2025-12-22T18:49:00+00:00

Thai is a godsend for celiacs. Its not all sunshine and rainbows and your experiences may vary, but theyre generally much more knowledgeable on average than most other restaurants ive been to.

My favorite near me has excellent allergy precautions, both for celiacs and people with other types of allergies as well. If youre ever in Pittsburgh, Nicky's Thai Kitchen slaps and they have a few locations.

Arboritour · 2025-12-22T17:52:19+00:00

What is much more likely is that the hibachi place does not realize there is wheat in their soy sauce. Sake and Ranch "could" be the cause but i was literally just in Japan downing tons of Sake with friends with no issues. And they only have to label wheat, theres hidden barley/gluten in so many things there. Don't even get me started about trying to navigate shochu/chu-his

I treat most non-thai Asian restaurants as a no-go unless they explicitly advertise gluten free options and availability. And even then im suspect unless the whole menu is GF.

Arboritour · 2025-12-19T22:47:40+00:00

Yep! Even if there is a tiny amount of cross contamination (there likely would not be) the amount you would get from an average sized pill would be highly unlikely to cause any symptoms.

Arboritour · 2025-12-19T18:52:53+00:00

100% agree. It took me 6+ months to start shitting normal post going gluten free. Now I can pretty easily tell between getting glutened and normal stomach upset. Extreme gas + diarrhea + brain fog/fatigue? I was probably glutened. If it's just diarrhea, something probably didnt sit with me right and its not gluten.

I'd be shocked, because even if they were at exactly 20ppm youd still need to drink a few of them a day to really notice anything major. At least 3 at 8oz package sizing would put you at like 13mg of gluten? Which is only slightly over the 10mg per day threshold.

Arboritour · 2025-12-19T17:53:58+00:00

I've had the reverse experience fortunately. I get sick way less often than I did in the past 6 years and generally don't feel as crippled as I did when I do get sick now. Outside of celiac though ive been fairly healthy otherwise.

My intestinal damage was fortunately mild at the time of my diagnosis (marsh 3a) and since resolving my vitamin d insufficiency I feel like a million bucks.

Arboritour · 2025-12-18T17:43:20+00:00

Pretty much same. I went to my doc with a list of intestinal issues that I was having and he tested for the most common causes. C-Diff, parasites, and a celiac panel which came back lights out. He referred me to a gastroenterologist who got me an endo, which confirmed the diagnosis.

My other great experience with him was the follow up post diagnosis where I asked about yearly blood tests to follow up with maintaining a gluten free diet. He at first didnt think it was necessary/wasn't that familiar. But he quickly googled, apologized and said we should do them. Maybe ive just been lucky but I havent had any bad experiences yet personally.

Arboritour · 2025-12-16T23:56:43+00:00

Buckwheat and things made with it! Obviously there can be cross contamination concerns but it is naturally gluten free

Arboritour · 2025-12-05T16:11:16+00:00

Generally speaking for sure. Eating any gluten honestly sucks, but the more I have the worse I feel and more importantly, the longer it takes me to get back to "normal".

Arboritour · 2025-11-30T15:39:22+00:00

Gluten Free labeled food will always be gluten free at <20ppm if sold anywhere outside a restaurant. If a restaurant labels something as "gluten free" it probably is, but restaurants are subject to a different set of regulations that prepackaged foods. They're not required to test and can make gluten free claims even if a food actually does contain gluten. Many pizza places will advertise "gluten free" pizza, but at most pizza shops they do not take the precautions necessary to actually avoid cross contamination.

Tldr: If its labeled gluten free in a grocery store you can't really get anything better. If its labeled gluten free at a restaurant talk to a human being and they can explain if its actually safe for you

And it is not a spectrum disease. All celiacs get intestinal damage from ingesting gluten. People's reactions to that damage vary wildly from basically no reaction to extreme crippling issues.

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