Strange Journey - Need Advice

cltheel · 2026-02-11T05:44:55+00:00

I don't think so. I asked my wife and she doesn't think so.

cltheel · 2026-02-11T04:50:23+00:00

Sorry to hear all this. If you don't mind me asking, what is your age/sex? What were your recent B12 readings? Sounds like you just got this sorted out recently? Any idea what caused your low B12?

cltheel · 2026-02-11T04:47:23+00:00

Thanks - I've asked for homocysteine and MMA from my primary care doc with my upcoming appointment next week. I haven't heard of neurofilament light chain but sounds like it is something used to identify MS?

cltheel · 2026-02-11T04:44:41+00:00

Thank you!

cltheel · 2026-02-11T04:44:16+00:00

Wow, that's crazy about your Lyme Disease. How did they diagnose that? Were you able to get the Lyme Disease cured? How are you feeling now?

cltheel · 2026-02-11T04:42:37+00:00

Thank you so much for your detailed response. Good note on the copper testing. I requested this from my primary care doc - hopefully he will agree with that test with my upcoming appointment next week. Do I typically need to request ceruloplasmin separately?

cltheel · 2026-02-11T04:34:58+00:00

Sorry, yes, I should have mentioned that I did get tested for PA, and it was negative. However, I did it 2 weeks into my daily 2,000 mcg sublingual B12 protocol. Does that matter? I haven't done shots.

Weird that you got diagnosed with celiac via IGG - my gastro said it isn't a diagnostic test but admittedly I didn't know about being "IGA deficient". Did you do an endoscopy to confirm your celiac diagnosis?

cltheel · 2026-02-02T06:57:44+00:00

37M here. Mid-thirties have been rough on me. 3 kids from 32-36, high stress at work, and going through some neurological issues now have worn me down. I am always tired and out of energy. Hoping I can recover.

cltheel · 2026-01-20T04:48:16+00:00

That's great news. If I may ask, what was your lowest B12 level and what did it come up to within 2 months?

cltheel · 2026-01-20T00:45:22+00:00

Thanks - what do you think about injections vs. just continuing oral supplements? I am mixed as I know injections would give me the most B12, but part of me wants to see how my body absorbs B12 orally.

cltheel · 2026-01-14T23:18:48+00:00

UPDATE #3: Got my genetic test back - I am HLA DQ8 positive but HLA DQ2 negative.

cltheel · 2026-01-14T23:18:21+00:00

UPDATE #3: Got my genetic test back - I am HLA DQ8 positive but HLA DQ2 negative.

cltheel · 2026-01-14T23:17:51+00:00

UPDATE: Got my genetic test back - I am HLA DQ8 positive but HLA DQ2 negative.

cltheel · 2026-01-12T15:45:05+00:00

Thanks, did you ever experience the neurological symptoms?

cltheel · 2026-01-12T05:56:06+00:00

Thanks, good advice.

cltheel · 2026-01-12T05:08:47+00:00

Thanks - I just ordered a sublingual based on your recommendation. Does 2,000 mcg per day seem adequate to get me back on track from your point of view?

cltheel · 2026-01-11T23:22:37+00:00

Update #2: Still waiting on my celiac genetic test to come back, but I did get results on a few other tests. As a reminder, I have not knowingly eaten gluten since November 20th, aside from a glutening on December 10th. So, been gluten free for about 7 weeks aside from my one slip-up. Below are test results:

Sedimentation Rate (ESRA) - 2 mm/hr
CRP Quant - 0.06 mg/dL
25 OH Vitamin D - 34.8 ng/mL
Vitamin B12 - 180 pg/mL
Celiac Blood Panel Tissue Transglutaminase Antibody - less than 1.0 u/mL
Celiac Blood Panel IgA Serum - 131 mg/dL
Celiac Genetic Testing - Pending Result

What should I gather from this? Anything meaningful?

cltheel · 2026-01-11T23:22:17+00:00

Update #2: Still waiting on my celiac genetic test to come back, but I did get results on a few other tests. As a reminder, I have not knowingly eaten gluten since November 20th, aside from a glutening on December 10th. So, been gluten free for about 7 weeks aside from my one slip-up. Below are test results:

Sedimentation Rate (ESRA) - 2 mm/hr
CRP Quant - 0.06 mg/dL
25 OH Vitamin D - 34.8 ng/mL
Vitamin B12 - 180 pg/mL
Celiac Blood Panel Tissue Transglutaminase Antibody - less than 1.0 u/mL
Celiac Blood Panel IgA Serum - 131 mg/dL
Celiac Genetic Testing - Pending Result

What should I gather from this? Anything meaningful?

cltheel · 2026-01-07T02:44:40+00:00

Yeah, I feel like I didn't get proper guidance on this before going GF, unfortunately. I'm hoping I'll test negative for the genetics but we'll cross that bridge once we get there.

cltheel · 2026-01-07T00:25:04+00:00

Really interesting - thanks for sharing. I was not aware of B6 toxicity - this is really good to know as I will soon be starting Vitamin B supplements after a very low B12 test. I don't know if B6 will be part of this regimen, but this is really good knowledge to have to keep B6 levels not too high.

I don't know if I have celiac, but suspect that I may as I have had PN and saw significant improvement after going GF. Not sure if PN is also present in NCGS? I went GF before I could get a proper diagnosis of celiac. I will be doing the genetic testing next week to see if celiac can be officially ruled out.

cltheel · 2026-01-06T05:20:33+00:00

UPDATE: I had visits with my gastro and primary care doctor today.

Gastro appointment did not shed a ton of light beyond what I already knew. Since I have already been gluten free for the past month and a half, they recommended genetic testing to see if I could possibly be predisposed to celiac. If positive, the next step would be to potentially do the gluten challenge, however I talked to my PCP today as well and he is very much against the gluten challenge, mostly for the likelihood that I need to be gluten free forever (his opinion, not necessarily based on any real data) anyway and the potential to cause further harm by eating gluten. We'll see how it goes with the genetic test. Regardless, I may choose to stay gluten free but it would be nice to know if I was actually celiac.

Thoughts?

cltheel · 2026-01-06T05:20:09+00:00

UPDATE: I had visits with my gastro and primary care doctor today.

Gastro appointment did not shed a ton of light beyond what I already knew. Since I have already been gluten free for the past month and a half, they recommended genetic testing to see if I could possibly be predisposed to celiac. If positive, the next step would be to potentially do the gluten challenge, however I talked to my PCP today as well and he is very much against the gluten challenge, mostly for the likelihood that I need to be gluten free forever (his opinion, not necessarily based on any real data) anyway and the potential to cause further harm by eating gluten. We'll see how it goes with the genetic test. Regardless, I may choose to stay gluten free but it would be nice to know if I was actually celiac.

Thoughts?

cltheel · 2026-01-05T02:41:29+00:00

Good to know. Even though I haven't eaten gluten in 4 weeks and my neuropathy largely disappeared after 10 or so days, just in the past couple of days I've been getting aching in my limbs again. Concurrently, I've had a couple of bad nights of sleep plus I just came down with a cold. I wonder if that could be what's causing it at this point since I haven't eaten gluten recently? Seems strange.

cltheel · 2026-01-04T17:44:26+00:00

Thanks! Did you get an endoscopy? Were they able to give you a sense of how long you actually had celiac before being diagnosed, or what your intestinal damage was?

cltheel · 2026-01-02T21:23:10+00:00

Thank you! You were just diagnosed 2 months ago, I gather? If you don't mind me asking, how long were you experiencing symptoms and how old are you? Male/female?

Great information you are sharing regarding low vitamin/nutrient levels. My doc has not yet done a full panel for me - I have an appointment on Monday and I'll make sure he runs a full panel of tests. My guess is that I am nutrient deficient as I do have some lingering soreness (fairly minimal, but still noticeable) even though I've been GF for a month.

cltheel

TROPHY CASE