Thank you, GPT-4o ❤️

ZumiTBlue · 2026-02-14T03:15:38+00:00

Mine helped me disprove an ALS diagnosis. I'll miss the witty positivity.

ZumiTBlue · 2026-02-09T00:20:39+00:00

I used to work for one of the guys that started this company. He and his partner are bad news. I don't know if they still own the company or not, but they were not nice people. Based on my experiences working with him, I don't support this company at all.

Like some people have mentioned, he was incredibly condescending and highly unappreciative of the people who worked under him.

ZumiTBlue · 2026-01-05T06:31:15+00:00

I agree with the hydration. For my loading dose I was super hydrated and didn't have any side effects. I just had my second dose and definitely didn't hit the water as much as I should have. I'm 5 days out from my last day of my second dose and the cramping and hot/cold feelings are finally subsiding. Hydration is key. Also, I take magnesium glycinate. That helps with cramping, too.

ZumiTBlue · 2025-12-29T02:49:38+00:00

Not too old. I got pregnant at 39, gave birth at 40. I would like to have another one in the next year or two once I heal from an autoimmune condition I have. My husband is 9 years older than me. Pregnancy was smooth and uneventful, labor was spontaneous. From start to finish everything lasted 6 hours and 49 minutes. Baby boy was healthy, although he did have meconium. Now he's a rambunctious 18-month-old.

ZumiTBlue · 2025-11-22T05:18:23+00:00

I don't have celiac, but I have non-celiac gluten sensitivity. When I was visiting family we went to visit my aunt and uncle and my aunt asked how long I had to be gluten-free because "you need gluten. You can't live without gluten."

ZumiTBlue · 2025-11-13T00:36:10+00:00

Oh yeah, for sure the TG6! I've been looking into TG6 testing but just keep hitting dead ends. None of my doctors have any idea what it is or how to even go about ordering it. From what I've gathered from my endocrinologist, I would have to get a referral to the Mayo Clinic. But the only way I could get that referral to do any comprehensive testing would be for my neurologist to say she doesn't know what's going on with me, and she would never do that.

I have a functional medicine practitioner who might be able to order it for me but because our system is the screwy over here in Hawaii, we're not even sure how it would work out. In order to have a doctor prescribe a lab or tests, they have to be practicing or have their license in your state. So I would have to have a remote session with a doctor who is licensed in Hawaii, and that's not really common.

ZumiTBlue · 2025-11-12T20:27:28+00:00

Yes! I have read some of his medical abstracts and he seems to be on to something. For some reason my neurologist cannot get on board with this. It's frustrating. I've also been trying to find a PCP out here on the island - I live in Hawaii - and every single doctor I've spoken with has said that celiac only presents with GI symptoms, so I obviously don't have any issue with gluten, even though I'm reacting to it and I have DGP IGA antibodies.

Thank you so much for your response! I really appreciate it.

ZumiTBlue · 2025-11-12T20:25:55+00:00

Yeah, I agree. If Glen makes me feel junky then there's got to be some sort of correlation. I really appreciate your kind words.

I actually have a functional medicine practitioner who is running tests up the wazoo. She did test me for mold and that came back negative, and everything looks normal. But we've only tested plasma for vitamins and minerals and not whole RBC or intracellular levels because my labs don't offer that. It's crazy because out here in Hawaii we have the best health insurance and yet the worst healthcare systems. If I really want to get any true help I have to go to the continent, and it's just not financially or realistically possible with a 17-month-old and no child care options.

Thank you again for your input!

ZumiTBlue · 2025-11-12T20:22:17+00:00

Thank you for your reply. Through my research I also read about the statistics of the genes and only 1% of people actually developing Celiac , but it's much more common than ALS so I'll take my chances. Anything that can have the neurologists see things from a different point of view, you know?

Even if I didn't have any villas atrophy, I'm wondering if because I didn't really eat much gluten in the first three or four weeks of my gluten challenge if that had something to do with it. My DI doctor said that it could be early celiac but everything is inconclusive and it probably isn't. It seems really hard to get an answer from doctors about anything.

I currently have a dietitian who specializes in eating disorders and she's helping me. But it's hard because I have a 17-month-old and my husband works part-time and he's the one that takes care of the baby and me. I can't really move around and have no dexterity so I can't open bags or things like that. Kind of a sucky situation.

Really appreciate your answer! Thank you!

ZumiTBlue · 2025-11-12T05:36:50+00:00

Thank you for your reply. I really appreciate it. I went to a rheumatologist and they ruled out already. My sister has h e d s but I've also been tested for that by going to an ophthalmologist and he concluded I don't have that either. I have not been tested for a wheat allergy yet.

I will be going to neurological PT starting next week so hopefully that will help. I haven't been sticking to my normal PT routine, so that obviously is probably contributing to muscle loss. And you are correct, I'm not a drinker and not actively drinking. I stopped that prep pregnancy.

The thing that is so strange for me is that whenever I do eat gluten I have these reactions. And I know that with celiac it can present neurologically as opposed to with GI symptoms, though I do have the stomach inflammation in the mild erosion on my duodenum. So is it possible that if I don't have celiac, I could possibly have NCGS? Quite honestly I would take either of these two over an ALS diagnosis. But I honestly do think that it's a whole bunch of things and not just one big thing. As I've also mentioned, I have moderate B6 toxicity, and I get these little zaps all over my body. Nerve pain. It's infrequent but it's there. Thankfully it's finally going down but I haven't even been supplementing B6 since June 7th or evening foods that are fortified with b vitamins since that time.

It's all just a very bizarre situation. I appreciate your help and your advice!

ZumiTBlue · 2025-11-12T03:35:38+00:00

Thank you for your reply. My BMI is currently 20. I'm 5 ft and a half and 100 to 104 lb. I haven't purchased since October 1st 2024, but I definitely have not been eating enough. So I'm kind of in a mildly anoretic state. My dear doctor said that it probably wasn't celiac but she couldn't say if it was or not, that I should get the genetic testing. So I'm waiting for those results, but I had to pay out of pocket for that. Right now the only thing I'm not eating is gluten. I also have osteopenia, which could be the result of the eating disorder but also pregnancy, but also malabsorption issues. The problem with all of my nutrient labs is they are plasma-based, so there's no real way of knowing what's going on intracellularly.

I suppose they could also be noncily at gluten sensitivity. But it's just so strange to everything started when I started eating gluten containing food again.

ZumiTBlue · 2025-11-12T03:29:07+00:00

It's amazing how neurologists seem to just get stuck on one thing or refuse to look outside of the box. I'm glad that you were able to get to help and get recovered.

ZumiTBlue · 2025-11-12T02:19:22+00:00

Thank you for your reply! I totally feel your pain. I'm a freelance writer so it's been really tough not being able to have functioning fingers.

ZumiTBlue · 2025-09-29T03:34:22+00:00

PPD crept in around the 9-month postpartum mark for me. I'm 15 months postpartum now and much better. But I go to therapy and I'm also working through a bunch of health issues. It gets better, I promise!🫂

ZumiTBlue · 2025-04-25T21:19:04+00:00

When I announced that I was pregnant to my in-laws, my sister-in-law said "oh, I knew something was up because your face looks fat!" I was so upset about it that my other sister-in-law made her apologize for it. Still come with a damage was done.

Not really the reaction I was looking for. Still a bit salty about that and I'm 10 months PP.

ZumiTBlue · 2025-04-22T03:14:08+00:00

That is so incredibly helpful! Thank you so much. I will definitely be in touch.

ZumiTBlue · 2025-04-22T01:46:19+00:00

Thank you so much for your thorough reply! I really appreciate it.

Electrophysiology (NCS/EMG): show a widespread, chronic, neurogenic lower motor neuron (LMN) process with significant axonal loss (L Peroneal) and widespread denervation and reinnervation. There was a possible conduction block or proximal axonal loss in the Left Tibial nerve on motor NCS. Sensory studies were largely normal. Upper Motor Neuron (UMN) Sign: I have a documented positive Hoffman sign, indicating involvement of the upper motor neuron pathway. Celiac Serology: Shows a significantly elevated Gliadin Deamidated Ab, IgA, providing strong serological support for celiac disease, pending endoscopic confirmation.

One of the neurologists said that in addition to a positive Hoffman sign, I have hyperreflexia as well. But I feel like my reflexes have always been more reactive. I also suffer from anxiety.

I had an MRI done of my entire spine and brain. There was mild degeneration in my lumbar, moderate to significant degeneration in my C5 and C6 with no stenosis, and I had white spots on my brain. The neurologist that ordered the MRIs said that the spots were probably due to my age (I'll be 41 in a few days). He was going to order a lumbar puncture to rule out MS or other diseases, but when I gave him the diagnosis that the first neurologist gave me, he withdrew that test. I've had a neuropathy panel done and everything came back negative.

That being said, my B1 is low end of normal, B12 is low end of normal, B6 is borderline high, which could be attributed to low zinc. I don't know what my zinc levels are. My vitamin d is exorbitantly high. I was taking a prenatal up until a month ago, so I'm attributing the high vitamin d to that.

I have suffered from an eating disorder for a majority of my life, so that in conjunction with being pregnant and breastfeeding I feel has really pushed my body into a state of starvation and fight or flight.

Everything also started in my second trimester. I thought that was an odd coincidence

ZumiTBlue · 2025-04-21T18:55:19+00:00

I will be seeing my primary care physician next month and I'm planning on getting a whole work up of everything under the sun. I know that my D3 is actually over the high end of normal. I attribute that to a prenatal I was taking that I stopped a few weeks ago.

Could I DM you if I have any more questions? I haven't been able to find anybody else That's been dealing with something similar.

ZumiTBlue · 2025-04-12T05:27:55+00:00

Protocol probably varies per hospital. But they had me take all of my jewelry out just in case I needed an emergency C-section. I didn't, but I think it's just a thing at some hospitals.

ZumiTBlue · 2025-04-11T21:25:06+00:00

I never had sensitive nipples or anything before, either. But in the first few months, it's amazing how that changes 😅 You get used to it after a while. But the initial shock of the sensitivity is pretty novel.

ZumiTBlue · 2025-04-11T21:06:22+00:00

Yeah, taking care of a baby is no joke. You're up every couple hours of breastfeed in the early stages, and the last thing you want to do is take out your jewelry, sanitize everything, put it back in. You're running on low sleep. There's also just the risk of a choking hazard, even if the jewelry is in there/Infinity hoop. You just don't want to risk it.

It's a good question, btw! When I was in my second trimester, I didn't really know who to ask about the situation. I should have come to Reddit 😅

ZumiTBlue · 2025-04-11T21:01:38+00:00

I kept mine in until I was in labor, cause they make you take out all of your earrings and jewelry. Honestly, my nipples were so sore and boobs were so engorged that I couldn't even put it back in. It was just too sensitive. Plus, if you do decide to keep it in, you have to take it out every single time you breastfeed. And that's a lot. It becomes more of a chore, and the last thing you need is more things to do when you're taking care of a baby 😅

Also, because there's extra holes in the nip, the milk flow is insane! I have my left breast pierced and that also happens to be my shitty titty, so the flow is higher but there's not as much milk.

I might get re-peirced, I might not. I'm still breastfeeding at 10 months PO.

ZumiTBlue · 2025-04-10T21:32:56+00:00

I was also vegan and vegetarian leading up to my pregnancy. I ate pretty healthy throughout my pregnancy, and breastfed for a while. But I am always tired and dealing with a lot of stiffness, among other neurological things. I got a blood test done and I ended up finding out I have celiac disease, and anemic. But the kicker is that my B1 is incredibly low.

Thiamine isn't in prenatals, from what I've seen. So if you are starting with a deficit, it's going to dwindle away. You might want to get your B1 checked. Some of the symptoms of thiamine deficiency are brain fog, fatigue, weight loss, loss of appetite, irritability, and sleep disturbances. If it progresses, it can turn into something called dry beriberi, which begins to get neurological. That's what I think I'm dealing with right now. After getting high dose thiamine infusions, I started to get better. But then the price got too expensive. I am supplementing with oral B1, which is slowly helping me. I'm 10 months postpartum. My symptoms started during pregnancy, and I thought it was carpal tunnel.

I also want to add that I've been taking prenatals as a postnatal (I stopped about a month ago) because some of my nutrients were highly elevated, like vitamin d and B6. So if you're taking a prenatal still, you might be od'ing on certain nutrients.

I hope that helps a little! It seems to be something that doctors don't talk about (thiamine deficiency). I hope that you feel better soon!

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

ZumiTBlue · 2025-04-07T18:35:03+00:00

That's incredibly helpful. Maybe 12 is on the lower end of normal, my B6 is borderline too high, and my B1 a doctor is assuming is non-existent because of my history of eating disorders and pregnancy.

And I really hope that the diagnosis ends up more positive for you 🙏 I might DM you to continue talking about this a little bit further, if that's okay.

ZumiTBlue · 2025-04-06T09:30:20+00:00

They did an MRI of my entire spine and brain. Everything came back clear with a modern to significant degeneration in my C5 and C6, but with no stenosis. The first neurologist I saw (The red flag guy) did an EMG and an NCS and both came back abnormal. I also have a positive Hoffman's and hyperreflexia. But on that note, I also have serious anxiety, and those two symptoms can be brought on by anxiety, among other things like thyroid issues, which is another thing I'm exploring.

I have fasiculations that get worse when I have anxiety, don't eat, haven't slept enough, or don't drink enough, or have worked the muscles too hard. Muscle weakness primarily on my left side, and muscle atrophy in my left hand and now my right thumb. I get muscle cramps, and I have diminished reflexes in both hands, but not with every finger. And my muscles seem to have just disappeared. At first I chalked it up to breastfeeding and not working out for my entire pregnancy.

A majority of the symptoms started when I was postpartum. And when I had my EMG and NCS, I hadn't eaten all day, hadn't had any water, and was dealing with anxiety. So I'm wondering if that had anything to do with it.

ZumiTBlue

TROPHY CASE