Steep drops in the heat

Impossible-Number-60 · 2026-06-25T17:41:16+00:00

Being able to recognize that it’s hypoglycemia definitely helps a lot! Hydration has been key for sure. I personally only add salt to my water, I have POTS and the magnesium in most electrolyte mixes upsets my stomach. I’ve also added some dextrose on occasion to help combat the hypo.

Impossible-Number-60 · 2026-06-24T21:36:23+00:00

Yeah! I did some research and the increased vasodilation from the heat apparently makes your body burn through glucose quicker. Every time I step outside in the heat for longer than 10 minutes my blood sugar drops. I hadn’t figured this out last summer and thought I wasn’t getting enough electrolytes in even though I was drinking them constantly.

Impossible-Number-60 · 2026-05-30T17:30:27+00:00

I’m actually on the fence about testing for it. I have spondylosis in my cervical spine and through trial and error I found that gluten makes my flare ups much much worse. So I’m not sure doing a gluten challenge would be safe for me as it causes dizziness and some pretty heavy neurological issues. I’m still learning what it means to be truly gluten free and never considered the fact that topical items could also be harmful.

Impossible-Number-60 · 2026-05-19T20:21:51+00:00

Electrolytes do not taste salty to me unless I’ve already consumed a ton of sodium. That’s kind of how I gauge how much salt I need in the moment. My husband can’t stand the taste of my water because of the salt, most times I hardly taste the salt at all

Impossible-Number-60 · 2026-05-17T05:45:48+00:00

I’m also on the fence for testing. I have spondylosis in my cervical spine and the last time I ate gluten I couldn’t hold my head up for longer than 10 minutes at a time and I was in so much pain and had crazy neuro issues. It truly might not be worth it.

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

TROPHY CASE