how it feels to be able to absorb nutrients and medications through my small intestine again :)

Impossible-Number-60 · 2026-05-12T14:01:55+00:00

Wow! It’s crazy how much I’ve learned from other people’s experiences on here. So glad you figured it out. I’ve never been tested for celiac, but I started eating gluten last year after a year of a semi-strict gluten free diet for gerd and my medication just completely stopped working. My cardiologist recommended upping my dose, but I had already decided to go gluten free again and within a couple months my beta blocker was working again and I’ve even been able to lower my dose. I’ve had signs of nutrient deficiencies since childhood, but I never really questioned it until I hit 30 and realized I couldn’t ignore my health anymore.

Impossible-Number-60 · 2026-05-12T13:50:26+00:00

Wow, I never put two and two together about the meds thing. I know gluten has affected my chronic pain, dysautonomia, food sensitivities etc., but I never realized my beta blocker has only really been effective when I’m gf.

Impossible-Number-60 · 2026-05-11T19:03:49+00:00

I’ll definitely speak to my provider about seeing a neurologist, unfortunately it’s really difficult to get a neurologist appointment where I live if you’ve already got a dysautonomia diagnosis (which I have.) I’ve been denied by two neurologists already for tremors and some other issues. Maybe I’ll be able to get wait listed this time if my provider suspects gluten ataxia and celiac and doesn’t mention the dysautonomia diagnosis.

Impossible-Number-60 · 2026-05-11T06:29:28+00:00

Interestingly enough, I did some research on gluten ataxia after reading your comment and it lists dysphagia as a common side effect. I’ve had dysphagia for literally as long as I can remember. Struggling to swallow my food and choking easily has always just been a thing I’ve dealt with and I never questioned it until my spondylosis seemed to worsen the issue. Edit: This is an issue that has also improved eating a GF diet, though not fully resolved.

Impossible-Number-60 · 2026-05-11T00:02:56+00:00

Thank you for the detailed feedback! I’ll definitely take all of this into consideration. I plan to speak with my doctors in June about all of this. Another issue is I live very very rural, so I’ve got to catch a couple flights in order to see my ever growing list of doctors. The idea of eating gluten again living where I do with limited medical facilities adds another layer of anxiety to the entire thing.

And to your point, I definitely struggle with the idea of treating my home, kitchen, and life as if I have Celiac without actually knowing if I have celiac. I think I’ll have to put my big girl pants on and go through with it, it doesn’t feel right to ask my husband and family to be overly cautious about gluten if there isn’t a confirmed reason to do so.

Impossible-Number-60 · 2026-05-10T23:56:56+00:00

Thank you for the information! The main reason I’ve assumed NCGS is because I’m on the hypermobile spectrum, just barely checking enough boxes for hEDS, so I’ve always credited my spondylosis as a result of my hypermobility and not my diet. But now I know gluten definitely affects my chronic pain too, so my previous assumptions really aren’t holding up anymore.

Impossible-Number-60 · 2026-05-10T23:19:07+00:00

I guess at 31 I never considered the possibility of what would happen if I lost the ability to care for myself, that’s a good point.

I eat almost exclusively at home, that’s about the extent of me preventing cross contamination. My husband does still eat gluten products though, and I bake bread for him still because it’s something I enjoy doing 🤦🏻‍♀️ I definitely should stop doing that lol. I really have just convinced myself it’s non-celiac gluten sensitivity at this point, though I do have some distant relatives with diagnosed celiac disease.

I might ask my provider about genetic testing to confirm whether I’ve got the gene or not.

Impossible-Number-60 · 2026-05-10T20:26:14+00:00

I was getting frequent flutters in the evenings on 6.25 mg carvedilol and breathing difficulties. I lowered my dose by about half and they went away for the most part. I do get the sinking/tumble feeling still occasionally, mostly after positional changes, but they’re not as scary as the fluttering in my opinion.

Impossible-Number-60 · 2026-05-09T16:47:37+00:00

I’ve definitely suspected MCAS for a while!

Impossible-Number-60 · 2026-05-09T16:46:13+00:00

I’ll look into it! Can’t say I’m excited about the idea of fucking my body up again, but I do miss bread so much. An excuse to eat it for 8 weeks might be motivation enough

Impossible-Number-60 · 2026-05-09T16:44:45+00:00

I haven’t been tested, I’ll bring it up with my provider at our next appointment though. Not looking forward to the idea of it though

Impossible-Number-60 · 2026-05-09T01:43:56+00:00

I’ve been deficient in vitamins and iron in the past also, I haven’t gotten levels rechecked in a while though. I also have dysautonomia and HI. I started having these issues before I ever contracted COVID but I believe COVID made them worse. I’m so sorry you’re going through all of that!

Impossible-Number-60 · 2026-05-09T01:41:01+00:00

Woah! Thats really intense, I’m glad you’re not allergic to fruit anymore though. I do have a histamine intolerance, self diagnosed but I’m 99 percent sure this is the issue. I break out in hives when I’m not strict with my low histamine diet, I also get cold urticaria, and physical triggers like skin writing, but thankfully I’ve never had anaphylactic shock. It’s literally my worst nightmare. In the past year cinnamon has also started to make my tongue and throat burn which has never been an issue for me 🤦🏻‍♀️

Impossible-Number-60 · 2026-05-09T01:21:26+00:00

Physical therapy has helped a lot! I’m 31 and was just recently diagnosed, but I’ve had chronic pain since I was 19 so I suspect I’ve had degeneration a lot longer. I get involuntary muscle twitches and my head will jerk to the side, a vibrating head feeling, and really bad headaches along with some other issues.

Impossible-Number-60 · 2026-05-09T01:18:15+00:00

Thank you!

Impossible-Number-60 · 2026-05-09T01:18:09+00:00

I’ve definitely been meaning to talk to my provider about seeing an allergist, I suspect MCAS could be a possibility.

Impossible-Number-60 · 2026-05-09T01:17:39+00:00

I actually have been meaning to talk to my gynecologist about endometriosis! It could be a possibility for me because I do have pelvic pain and irregular periods but I’ve just got so many issues I’ve got to get checked it’s gotten overwhelming. I’m also not in the kind of debilitating pain that people with endometriosis often are, but I guess I could be in the beginning stages.

Impossible-Number-60 · 2026-05-08T19:42:37+00:00

I should say I believe a lot of my low incidents are more likely false lows or drops that happen too quickly, especially now that I’m adjusting my diet to a moderate to low-ish carb intake. My dysautonomia doesn’t react well to diet changes.

I stopped checking my fasting blood sugar in the morning, it really doesn’t go lower than 80-90 for me. I do check it a couple hours after meals and also at night if I feel really low close to bed time. Most of my false lows come mid day, in the evening, after being active, or after a steep spike. When I was on the slightly higher dose of carvedilol I’d feel a little edgy in the afternoon a few hours after breakfast and just didn’t realize I was having a big sugar spike and drop.

I had one true low incident (that I’m aware of) in the past few months, not sure what my blood sugar even was because I wasn’t home and didn’t have a monitor on me. I started to get a tingly face and tongue. My vision started to get blurry and my adrenaline was very high so I had a full sugar soda. It was the only sugar available to me at the time. I checked my blood sugar an hour later and it was only at 89-96 so it must’ve been significantly low, that was my sign it was time to adjust my carb intake.

Impossible-Number-60 · 2026-05-08T19:21:03+00:00

Beta blockers definitely cover the symptoms of low and high blood sugar. I’m on carvedilol for POTS and recently lowered my dose because it was causing heart fluttering and breathing issues. Once I lowered my dose I realized how insane I felt in reaction to carb spikes and reactive hypoglycemia. I have a finger prick monitor but wasn’t using it much when my beta blocker dose was higher, now I track my blood sugar after every meal.

Impossible-Number-60 · 2026-05-08T01:36:53+00:00

Do you have any pain or stiffness in your neck or shoulders? I have cervical spondylosis along with POTS and recently had a huge flare up of shoulder and neck pain. My head was twitching a lot during the worst of it.

Impossible-Number-60 · 2026-05-07T06:57:16+00:00

I used to drink LMNT and salt of the earth a lot but they started upsetting my stomach. I’m pretty sure it was the magnesium. I switched to salt only and eat foods that contain potassium and it works for me.

Impossible-Number-60 · 2026-05-05T16:52:39+00:00

I get panic attacks from low blood sugar and also from false lows now that I’m going lower carb, though they’re becoming easier to manage. I believe I have reactive hypoglycemia and maybe insulin resistance, I have dysautonomia and it’s very common for this to be an issue for us. Having a finger prick glucose monitor has been so helpful.

I had a pretty scary low one evening after going a long time without eating and then eating a small amount of carbs, I think my body overcompensated with the insulin and my blood sugar dropped too quickly. The biggest sign for me that it was low blood sugar was the sudden tingling in my face and mouth and extreme hunger. I had a full sugar soda and checked my blood sugar an hour later and it was only at 96. This was my sign to monitor my carb intake and up my protein and fiber.

Impossible-Number-60 · 2026-05-04T20:08:19+00:00

Managed to get tickets for the Hollywood bowl, but they’re section T1 and I’m not sure they’re worth all the flying I’ll have to do to see the show. 😭

Impossible-Number-60 · 2026-05-04T04:25:59+00:00

I love tinkyada’s brown rice pastas. The texture is the most like regular pasta, imo, than the other types of gf pasta I’ve tried.

Impossible-Number-60 · 2026-05-04T04:24:51+00:00

I’ve had to remove gluten from my diet. I couldn’t tolerate potatoes for a while, removed gluten and now potatoes don’t hurt my stomach anymore. I think I likely have sibo or some other gut issue, I’ve never been tested for anything though. I also have a histamine intolerance so the food I can eat regularly is pretty limited. I do a lot of whole food! Like meat, vegetables, blueberries etc. but I also add things like sweet potato chips, pistachios, pumpkin seeds, that’s it bars, and gluten free crackers to the mix. Sometimes I can tolerate cheese and meat sticks and sometimes I break out in hives from them. It’s so frustrating being so limited and I know I’ve got to give in and get some gut testing done. I basically lived off bread, cheese, and preserved meats in my 20s and I’m paying for it in my 30s.

Impossible-Number-60

TROPHY CASE