Questions: celiac and inflammation, peripheral neuropathy, etc.

[marcel g]

Hi everyone,

My main symptoms right now are fatigue, and tingling/pins and needles throughout my body, especially legs, hands, and face, and muscle twitching, mostly in my calves. No muscle pain, weakness, lack of coordination, eye problems, or significant orthostatic intolerance.

As I wait for my gluten antibody tests to come back, which I'm assuming will be negative because I was only eating low amounts of gluten over the period before I did the blood draw, I'm curious about the relationship of celiac and NCGS to inflammatory markers, and have some other questions as well:

1. My ESR and CRT blood tests have always been low, meaning low inflammation in my body. Should does the damage that celiac disease causes to the small intestine cause inflammation? Or can you have an autoimmune disorder and still have low inflammation?
2. can you have partial malabsorption? Most of my vitamin and mineral levels when checked have been normal, but I recently realized that the supplement I've been taking before my last B12 test has 4000% RDA of B12, but only 120% RDA for the other B vitamins. Is it possible that this gets enough B12 into me, but still means I'm short on the other Bs? I guess this question would best be answered by getting my homocysteine tested.
3. If my gut has been healing since stopping the small amounts of gluten I was inadvertently consuming over the last year or so, does that make future tests for things like malabsorption unreliable?
4. I was gluten free for about 4 years in my 20s, after a naturopath diagnosed me with leaky gut (this was back in the 90s), I started to eat gluten again and didn't notice obvious gastro symptoms, so I thought I was fine. Until I wasn't about 2 years ago. Thinking back, I did have a lot of abdominal discomfort, loose BMs, gas, bloating, fatigue (which could've just been having kids) and anxiety. (The anxiety could just be a separate thing.) Anyway, is it possible to have celiac go into remission for a while, or was I potentially just doing damage to my gut without knowing it?
5. What is the source of the tinging/pins and needles/peripheral neuropathy with celiac? Is it the nutrient deficiency, or is it the autoimmune reaction?
6. To put it another way, if my inflammation is low, and autoimmune disorders have symptoms caused by inflammation, do I have something that isn't an autoimmune disorder?

As wheatwhacked pointed out in another thread, my vitamin D levels might be borderline, so I've readded that supplement to the pile of pills I take every day.

I have also added high dose thiamine to my regular supplements today in an effort to reduce the fatigue, and I'll try to report back with how that goes.

TIA,

Marcel

[Scott Adams]

1) Those tests can detect inflammation associated with heart disease, and that caused by some autoimmune diseases, but I know that many people which celiac disease can still have low scores on those tests, so they may not be a good indicator for celiac disease, at least in some people:
https://www.mayoclinic.org/tests-procedures/c-reactive-protein-test/about/pac-20385228#:~:text=Overview,than a standard CRP test.

2) This is possible, but as you mentioned, taking a B-complex is a good starting point for people newly diagnosed with celiac disease, and you should get a follow up vitamin and mineral level blood panel after a few months to see if you are deficient in anything. The damage caused by celiac disease does affect specific areas of the intestine, so there are general deficiencies seen in most celiacs, but because the damage can vary greatly from person to person, so can the different deficiencies.

3) The only tests that I know would be unreliable would be those for celiac disease. Leaky gut tests should be valid after going gluten-free. 

4) Yes, after going gluten-free for years many celiacs go into remission, and some have reported eating gluten again with no symptoms. I believe the longest case I've heard of was someone who went 10 years eating gluten again before their disease came back with a vengeance. What may be "remission" of the disease after fully healing can vary greatly from person to person, and some people will get symptoms and issues every time they get a tiny amount of gluten, while others may not have any symptoms even if they are a lot of gluten. The disease is lifelong, and I'm not aware of any documented cases of it going away completely in anyone, with the exception of a study where a bone marrow transplant was done in someone with refractory celiac disease (I believe...going from memory here...and I'm not sure if this person had follow up tests for years afterwards).

5) As I understand it is an autoimmune reaction that happens to some of us with celiac disease:

Quote

The team found a significant reduction in volume of specific brain regions in patients with TG6 autoantibodies, providing evidence for a link between autoimmunity to TG6 and brain atrophy in patients with celiac disease. 

and more in this topic here

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

 6) While ESR and CRT blood tests may help to detect certain autoimmune diseases like lupus, I've not seen research that shows that they can be used to help diagnose, or even as follow up care for those with celiac disease.

[marcel g]

13 hours ago, Scott Adams said:

1) Those tests can detect inflammation associated with heart disease, and that caused by some autoimmune diseases, but I know that many people which celiac disease can still have low scores on those tests, so they may not be a good indicator for celiac disease, at least in some people:
https://www.mayoclinic.org/tests-procedures/c-reactive-protein-test/about/pac-20385228#:~:text=Overview,than a standard CRP test.

2) This is possible, but as you mentioned, taking a B-complex is a good starting point for people newly diagnosed with celiac disease, and you should get a follow up vitamin and mineral level blood panel after a few months to see if you are deficient in anything. The damage caused by celiac disease does affect specific areas of the intestine, so there are general deficiencies seen in most celiacs, but because the damage can vary greatly from person to person, so can the different deficiencies.

3) The only tests that I know would be unreliable would be those for celiac disease. Leaky gut tests should be valid after going gluten-free. 

4) Yes, after going gluten-free for years many celiacs go into remission, and some have reported eating gluten again with no symptoms. I believe the longest case I've heard of was someone who went 10 years eating gluten again before their disease came back with a vengeance. What may be "remission" of the disease after fully healing can vary greatly from person to person, and some people will get symptoms and issues every time they get a tiny amount of gluten, while others may not have any symptoms even if they are a lot of gluten. The disease is lifelong, and I'm not aware of any documented cases of it going away completely in anyone, with the exception of a study where a bone marrow transplant was done in someone with refractory celiac disease (I believe...going from memory here...and I'm not sure if this person had follow up tests for years afterwards).

5) As I understand it is an autoimmune reaction that happens to some of us with celiac disease:

and more in this topic here

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

 6) While ESR and CRT blood tests may help to detect certain autoimmune diseases like lupus, I've not seen research that shows that they can be used to help diagnose, or even as follow up care for those with celiac disease.

Thanks sooo much Scott, that was really helpful.

I'm hoping that I can eventually get a diagnosis for celiac, because then I can be done with the years of wondering about what chronic debilitating and incurable disease I have.

1) really good to know that ESR and CRP tests don't necessarily rule out celiac or other autoimmune diseases.

2) What I might do is wait a few months before doing another nutrient test, and then stop taking the supplements for a week or 2 before the blood draw to see how my nutrient levels are doing.

3) I might see if my doctor thinks a SIBO test is warranted instead of leaky gut. My BMs have been much improved since the last round of anti-biotics (I live in a country where gastro-bugs are super common), cutting out the small amounts of gluten I was ingesting, and adding some more probiotics. In fact I can't remember having good BMs for any length of time for the last decade at least. But I do get gassy from too much carbohydrate like bananas or pears.

4) by remission, I didn't mean fully healed. I had "bad guts" in my mid 20s after a giardia infection, and eventually found a naturopath who thought I might have leaky gut. I stopped gluten, dairy, alcohol and caffiene, and added some supplements that she recommended. After I few years I was doing a lot better. I started adding everything I'd cut out, and since I didn't have any immediate gastro symptoms, I figured I was all healed up. I didn't realize that celiac doesn't always manifest as gastro symptoms. For the next 10 years I think I didn't have any noticeable symptoms, but maybe I wasn't paying attention. But then over the next 10 years I started having much more frequent "unhappy guts", worsened anxiety, insomnia, fatigue, and I quit alcohol and coffee. I assumed it was the problems of having kids. 2019 and 2020 were really stressful years for me, and it was in the middle of that that I started having much worse anxiety, depression, debilitating fatigue, dizziness, brain fog, and diarrhea. Lots of doctors couldn't find anything and so I assumed I had ME/CFS with IBS. I quit gluten again in 2020, and gradually improved over the next year. I wasn't strictly gluten free in 2021 though, and became lax about my supplements, maybe that's why in January 2022 the fatigue and brain fog really came back and the pins and needles and numbness and muscle twitches started. Researching these symptoms led me to bump into an article about celiac, and now here I am, slowly improving again.

5) That reading list is wow, thanks for pointing me to it. I didn't realize so much about celiac. Also wow: my mother has the cerebro version of ataxia, and so do 5 of her siblings. She also had a case of psoriasis a few years ago that doctors couldn't explain. She has been on and off gluten, and feels a lot better when off. One of my cousins on her side also has refractory celiac. I also have a cousin and an uncle (on my mother's side) who have schlerosing cholangitis. My brother and my sister are probably Aspberger's, although I don't know how strong the ASD to celiac connection is. Since these neurological symptoms aren't caused by nutrient deficiencies, which I don't seem to really have, the lack of serious nutrient deficiencies (aside from some B vitamins possibly) doesn't rule out celiac in my case. Fortunately, my pins and needles and muscle twitching seems to be receding slowly after about 3-4 weeks off gluten.

I know I might have some revisionist history when trying to remember all the symptoms I've had over the last almost 30 years, but man, does celiac fit a diagnosis better than anything else I've tried to match to my situation. Especially learning that celiac doesn't always present as overt gastro symptoms, which is why I could eat gluten from when I was 30 to 50 and not realize that I was actually having symptoms and maybe doing damage. I quit alcohol about 8 years ago because it made me feel terrible. That was a really good thing since I am probably alcoholic, but now I'm realizing that it was always the beer that really made me feel the worst.

If I do indeed have celiac, I will be feeling some kind of regret that I didn't catch it sooner. So many suboptimal years spent fighting the symptoms. I haven't gotten my results back from the antibody test yet, but I'm guessing they'll be negative, since I was wasn't consuming that much gluten before I did the blood draw. (some cereal that's mainly oats but has some wheat, and some granola, also mainly oats, but with some wheat bran) I didn't realize at the time I was supposed to be eating gluten before the test.

I have a big trip coming up in June, and I don't really want to do a gluten challenge for 6 weeks in order to retake the antibody test, so I think I'm going to delay further diagnostics until after I get back from my trip. And just stay gluten free in the meantime and hope my symptoms continue to improve.

Thanks again,

Marcel

 

 

 

[marcel g]

Update: I accidentally/carelessly glutened myself a couple of days ago. (ate sausages I bought before I went 100% gluten free a few weeks ago, forgot to check the package before eating them.)

Result: my symptoms were minor: some pain and discomfort in my abdomen, the pins and needles had increased the next morning, and the next afternoon I became really short tempered and irritable, almost manic. It was a weird feeling that I haven't had for a long time.

In my gluten eating days I would've put that feeling off to just being hangry, but on Sunday we went to the mall, all the restaurants were full, so we didn't eat lunch until 3pm, I was starving. And although I was grumpy from being so hungry, it was a totally different feeling than I had yesterday after having gluten.

I expect my results to come back within the next week or so, even though I expect they'll be negative due to not having enough of a gluten challenge. I might not do another test, since the combination of gluten-free and increased B + D vitamins and especially thiamin has helped my fogginess and fatigue a lot, and I don't like the thought of going through a long gluten challenge.

I think I also should talk to my wife about getting my kids tested. They both have non-digestive symptoms that could be celiac.

Edited May 5, 2022 by marcel g
forgot something

[Scott Adams]

All first-degree relatives should be screened for celiac disease, even if they don't have any symptoms. A recent Mayo clinic study showed that up to 44% of first-degree relatives also have it.

Too late now, but perhaps this will help if it happens again:

 

[marcel g]

9 hours ago, Scott Adams said:

All first-degree relatives should be screened for celiac disease, even if they don't have any symptoms. A recent Mayo clinic study showed that up to 44% of first-degree relatives also have it.

Too late now, but perhaps this will help if it happens again:

 

Thanks for the reference. It's a helpful list.

My wife is at least gluten intolerant, if not NCGS or celiac, and we have one child with anxiety and ADHD and another with frequent mouth ulcers who has also become much more moody and irritable lately, so it's probably a good idea to get them tested.

[knitty kitty]

 

Oh, absolutely, get the kids tested.  Mouth ulcers can be a symptom of B12 deficiency.  B12 deficiency can worsen symptoms of ADHD.

 

[marcel g]

Update: my tissue transglutaminase ab, iga results came back as “not detected” 

this was expected, since I didn’t get the full celiac panel done, and I didn’t eat much gluten for 18 months before taking the test. 
 

other results and changes:

- my EBV igg came back at 639, where >22 is a positive. EBV iga was negative, meaning I didn’t have active EBV when I took the test. 
I keep getting sick with a sore throat, (extra) fatigue, and headache, especially when under stress or if I’ve been pushing myself physically, so my health anxiety brain starts to wonder if i have EBV periodically reactivating. 
- my ANA panel results were all negative, which I guess means that I don’t have a specific set of autoimmune diseases. 
- since cutting out the small amounts of gluten I was eating, It feels like a mental fog has lifted. 
- the fatigue improved only a little bit until I started taking high dose thiamine and extra B and D3 supplements. That was About 3 weeks ago. I have way more energy now and have started exercising again, at least before I got a virus last week.

- around the same time I removed the final amounts of gluten, I also started Align probiotics, to go with the Florastor probiotics, I was taking, and the last few weeks have been the first time in decades I’ve had solid BMs every day for more than a day or 2. Also, they don’t stick to the bowl anymore. Before I went to low gluten diet, I would need to use the toilet brush to clean up every time. 
- the peripheral neuropathy symptoms have been gradually improving as well. They flared up a bit when I got sick last week with some virus (negative for SARS-cov2, so my ebv sidekicks maybe?) but have gone back down again this week as I’ve recovered. 
 

so, positive developments overall. I would like to know if I have celiac though, and would like to get a proper celiac panel done, but I’m kind of dreading doing a gluten challenge for 6 weeks. 
also, I’m taking my kids to visit Canada for a month staring in June, so I think I’ll wait until after that trip before deciding whether to do it. I don’t want to feel horrible while traveling with kids. Long flights are bad enough as it is. 

Does anyone know how long to keep taking the high dose thiamine? I was thinking about 3 weeks total before dropping it down again. 

[Posterboy]

On 5/5/2022 at 9:41 PM, marcel g said:

My wife is at least gluten intolerant, if not NCGS or celiac, and we have one child with anxiety and ADHD and another with frequent mouth ulcers who has also become much more moody and irritable lately, so it's probably a good idea to get them tested.

Marcel G,

I see this alot......we get low in nutrients then we get sick....

See here how Lysine can help your child's Mouth Ulcers....

Entitled "Clinical success of lysine in association with serumal and salivary presence of HSV-1 in patients with recurrent aphthous ulceration"

https://www.researchgate.net/publication/267202860_Clinical_success_of_lysine_in_association_with_serumal_and_salivary_presence_of_HSV-1_in_patients_with_recurrent_aphthous_ulceration

On 4/28/2022 at 2:18 AM, marcel g said:

Is it possible that this gets enough B12 into me, but still means I'm short on the other Bs? I guess this question would best be answered by getting my homocysteine tested.

An often overlooked cause of elevated Homocysteine levels is  B2 aka Riboflavin.

Here is an article that explains why....

https://chrismasterjohnphd.com/blog/2019/02/26/mthfr-just-riboflavin-deficiency/

Riboflavin is the Vitamin in a B-Complex that changes your urine to a yellow color when it bypasses the Kidneys....

Scott is right to recommend a good B-Complex....

See this research that shows the B-Vitamins B1, B2 and B6 also help mouth uclers.

Entitled "Recurrent aphthous ulceration: vitamin B1, B2 and B6 status and response to replacement therapy" aka Supplementation.

https://pubmed.ncbi.nlm.nih.gov/1941656/

Frequency is Key when taking B-Vitamins.......with meals (3x) or 2x a day is best which ever is easiest for you too do!

I have written Posterboy blog about how all these deficiencies are connected.....It might help you too read it.

I might respond more later.....but this is a good place to start...

I wanted to say something about your Elevated C Reactive Protein but I don't want to load you down with too much information at one time.......so I will save that for another time.......but not surprisingly this also will/can respond to Supplementation.

Find you some Magnesium Citrate (with Meals) and/or Magnesium Glycinate and your body will thank you for it!

I have been you! You can recover from high C Reactive Protein Levels.

See this research about it that explains it very well!

Entitled "Dietary magnesium intake is inversely associated with serum C-reactive protein levels: meta-analysis and systematic review"

https://pubmed.ncbi.nlm.nih.gov/15930481/

I hope this is helpful but it is not medical advice.

As I am fond of saying “To Educate is to truly free!”

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

And Oh.....I almost forgot.....I have done this myself (all of the above and the Zinc Lozenges too that can help (and did help my ADHD symptoms) your other child's ADHD..... the Zinc lozenges will become metallic tasting in their/your mouths when you get enough Zinc in your/their systems....

See this research about it (Zinc) over 15+ years old and doctors still rely on medicine instead of basic  healthy nutrition and/or appropriate and proper supplementation.

https://www.sciencedaily.com/releases/2004/04/040409094643.htm

Posterboy by the grace of God,

[marcel g]

On 5/21/2022 at 7:18 AM, Posterboy said:

Marcel G,

I see this alot......we get low in nutrients then we get sick....

See here how Lysine can help your child's Mouth Ulcers....

Entitled "Clinical success of lysine in association with serumal and salivary presence of HSV-1 in patients with recurrent aphthous ulceration"

https://www.researchgate.net/publication/267202860_Clinical_success_of_lysine_in_association_with_serumal_and_salivary_presence_of_HSV-1_in_patients_with_recurrent_aphthous_ulceration

An often overlooked cause of elevated Homocysteine levels is  B2 aka Riboflavin.

Here is an article that explains why....

https://chrismasterjohnphd.com/blog/2019/02/26/mthfr-just-riboflavin-deficiency/

Riboflavin is the Vitamin in a B-Complex that changes your urine to a yellow color when it bypasses the Kidneys....

Scott is right to recommend a good B-Complex....

See this research that shows the B-Vitamins B1, B2 and B6 also help mouth uclers.

Entitled "Recurrent aphthous ulceration: vitamin B1, B2 and B6 status and response to replacement therapy" aka Supplementation.

https://pubmed.ncbi.nlm.nih.gov/1941656/

Frequency is Key when taking B-Vitamins.......with meals (3x) or 2x a day is best which ever is easiest for you too do!

I have written Posterboy blog about how all these deficiencies are connected.....It might help you too read it.

I might respond more later.....but this is a good place to start...

I wanted to say something about your Elevated C Reactive Protein but I don't want to load you down with too much information at one time.......so I will save that for another time.......but not surprisingly this also will/can respond to Supplementation.

Find you some Magnesium Citrate (with Meals) and/or Magnesium Glycinate and your body will thank you for it!

I have been you! You can recover from high C Reactive Protein Levels.

See this research about it that explains it very well!

Entitled "Dietary magnesium intake is inversely associated with serum C-reactive protein levels: meta-analysis and systematic review"

https://pubmed.ncbi.nlm.nih.gov/15930481/

I hope this is helpful but it is not medical advice.

As I am fond of saying “To Educate is to truly free!”

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

And Oh.....I almost forgot.....I have done this myself (all of the above and the Zinc Lozenges too that can help (and did help my ADHD symptoms) your other child's ADHD..... the Zinc lozenges will become metallic tasting in their/your mouths when you get enough Zinc in your/their systems....

See this research about it (Zinc) over 15+ years old and doctors still rely on medicine instead of basic  healthy nutrition and/or appropriate and proper supplementation.

https://www.sciencedaily.com/releases/2004/04/040409094643.htm

Posterboy by the grace of God,

Thanks Posterboy. Yes, it's a lot of info. My C-reactive protein levels were normal I believe. Virtually everything is normal. I take cal-mag in the morning and magnesium-glycinate in the evening.

I had my homo-cysteine a couple of months ago and it was in normal ranges too.

I just had the genetic test done and I don't carry the genes for Celiac, so there's a very low probability that I Celiac. (Which means I'll ahve a lot of questions about Non-Celiac-Gluten_sensitivity.)

My transglutimase antibodies were also low but were detected at 0.5, which I found weird, because I've been fully gluten free for 3 months before the blood draw for the test.

I suspect I have Chronic Fatigue Syndrome or some  auto-immune disorder that isn't detected on normal tests, and non-celiac-gluten-sensitivity on top of that. Or I might be a (really) rare person who has normal TSH and T4, but can't convert the T4 into T3. (Doctors won't test the T3 because the TSH is normal)

 

best,

Marcel
 

 

[marcel g]

On 5/5/2022 at 11:47 AM, marcel g said:

Update: I accidentally/carelessly glutened myself a couple of days ago. (ate sausages I bought before I went 100% gluten free a few weeks ago, forgot to check the package before eating them.)

Result: my symptoms were minor: some pain and discomfort in my abdomen, the pins and needles had increased the next morning, and the next afternoon I became really short tempered and irritable, almost manic. It was a weird feeling that I haven't had for a long time.

In my gluten eating days I would've put that feeling off to just being hangry, but on Sunday we went to the mall, all the restaurants were full, so we didn't eat lunch until 3pm, I was starving. And although I was grumpy from being so hungry, it was a totally different feeling than I had yesterday after having gluten.

I expect my results to come back within the next week or so, even though I expect they'll be negative due to not having enough of a gluten challenge. I might not do another test, since the combination of gluten-free and increased B + D vitamins and especially thiamin has helped my fogginess and fatigue a lot, and I don't like the thought of going through a long gluten challenge.

I think I also should talk to my wife about getting my kids tested. They both have non-digestive symptoms that could be celiac.

UPDATE:
It turns out I don't carry the genes for celiac disease. I had it tested when I was in Canada last month. They also did the standard Celiac test, which I knew wouldn't turn up any thing because I'd been mostly gluten free for 2 years and fully gluten free for 3-4 months. The doctor insisted that antibodies don't disappear over time, and I just wanted the genetic test, so I stopped arguing with her that the celiac panel would be useless.

Oddly enough the celiac panel did detect gluten antibodies at 0.5, but that's low enough that I suspect it might be noise rather than signal.

The peripheral neuropathy has continued, as well as the fatigue and exercise and stress intolerance. So I suspect that while I probably have Non-Celiac-Gluten-Sensitivity, I also have some other undiagnosed auto-immune issue. I'm hoping my primary care doctors can send me to a good neurologist soon.
 

cheers,

Marcel

cc @knitty kitty @Scott Adams @Wheat Wacker

[marcel g]

If my genetic test says I don't carry the genes for Celiac Disease, and I'm pretty sure that I'm sensitive to gluten, can I assume that I don't have Celiac Disease and have Non-Celiac-Gluten-Sensitivity? My recent test results came back negative for the Celiac genes, but did detect tranglutinimase at 0.5. I told the Dr not to bother with the standard Celiac panel because I'd been gluten free for months, but she insisted that antibodies don't disappear, so I got the normal panel along with the genetic test. 

I'm assuming that the super low odds of having celiac disease without the genes for it mean that I can assume I don't have celiac disease.

Do you need to do a test with a gluten challenge to diagnose NCGS? Or do you just go by your reaction to gluten?

I was hoping that being gluten sensitive and avoiding gluten would solve my health issues, and it has helped raise my baseline, but that's still pretty limited, so I guess I'm going to have to keep trying to figure out what my issues are.

TIA,

Marcel

Edited August 8, 2022 by marcel g
forgot something

[Scott Adams]

I think it is correct to assume that you have non-celiac gluten sensitivity, and since you know you've got symptoms when you eat gluten there is likely no need to do another celiac panel, which may turn out negative anyway, as those with NCGS don't necessarily have elevated antibodies. There is a stool test done by Enterolab that can detect NCGS, and I can't recall if you need to eat gluten beforehand.

[Posterboy]

On 8/7/2022 at 10:04 PM, marcel g said:

Thanks Posterboy. Yes, it's a lot of info. My C-reactive protein levels were normal I believe. Virtually everything is normal. I take cal-mag in the morning and magnesium-glycinate in the evening.

I had my homo-cysteine a couple of months ago and it was in normal ranges too.

I just had the genetic test done and I don't carry the genes for Celiac, so there's a very low probability that I Celiac. (Which means I'll ahve a lot of questions about Non-Celiac-Gluten_sensitivity.)

My transglutimase antibodies were also low but were detected at 0.5, which I found weird, because I've been fully gluten free for 3 months before the blood draw for the test.

I suspect I have Chronic Fatigue Syndrome or some  auto-immune disorder that isn't detected on normal tests, and non-celiac-gluten-sensitivity on top of that. Or I might be a (really) rare person who has normal TSH and T4, but can't convert the T4 into T3. (Doctors won't test the T3 because the TSH is normal)

 

best,

Marcel
 

 

Marcel,

Taking Benfotiamine and Magnesium can be helpful for your Thyroid problems.

Here is some research on it that might help you.

Entitled "Red blood cell magnesium and chronic fatigue syndrome"

https://www.sciencedirect.com/science/article/abs/pii/014067369191371Z

And this research on Chronic Fatigue and Thiamine

Entitled "Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study"

https://pubmed.ncbi.nlm.nih.gov/23379830/

I also recommend this one too you about thyroid problems and a Magnesium deficiency.

Entitled "Magnesium metabolism in hyperthyroidism"

Where they note in there conclusion

quoting "These observations clearly indicate that in Graves' disease, the magnitude of magnesium metabolism alteration is closely related to the extent of the increase in thyroid hormones in plasma"

https://pubmed.ncbi.nlm.nih.gov/8930527/

See also this research a thiamine deficiency and thyroid problems

Entitled "Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

So the research to me strongly indicates the thyroid problems you are having is from a Vitamin and Mineral deficiency.

If you want to read up on all how a Thiamine deficiency can affect you find the Hormone Matters website.

Here is a sample article from their site about how Thiamine and Thyroid problem go hand in hand.

http://www.hormonesmatter.com/thyroid-hormones-mitochondrial-functioning-hair-loss-new-clues-hair-follicles/

I also found taking Niacinamide, Selenium and Zinc is also important for thyroid  health.

I hope this is helpful but it is not medical advice.

Good luck on your continued journey!

Posterboy by the grace of God,

[marcel g]

3 hours ago, Posterboy said:

Marcel,

Taking Benfotiamine and Magnesium can be helpful for your Thyroid problems.

Here is some research on it that might help you.

Entitled "Red blood cell magnesium and chronic fatigue syndrome"

https://www.sciencedirect.com/science/article/abs/pii/014067369191371Z

And this research on Chronic Fatigue and Thiamine

Entitled "Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study"

https://pubmed.ncbi.nlm.nih.gov/23379830/

I also recommend this one too you about thyroid problems and a Magnesium deficiency.

Entitled "Magnesium metabolism in hyperthyroidism"

Where they note in there conclusion

quoting "These observations clearly indicate that in Graves' disease, the magnitude of magnesium metabolism alteration is closely related to the extent of the increase in thyroid hormones in plasma"

https://pubmed.ncbi.nlm.nih.gov/8930527/

See also this research a thiamine deficiency and thyroid problems

Entitled "Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

So the research to me strongly indicates the thyroid problems you are having is from a Vitamin and Mineral deficiency.

If you want to read up on all how a Thiamine deficiency can affect you find the Hormone Matters website.

Here is a sample article from their site about how Thiamine and Thyroid problem go hand in hand.

http://www.hormonesmatter.com/thyroid-hormones-mitochondrial-functioning-hair-loss-new-clues-hair-follicles/

I also found taking Niacinamide, Selenium and Zinc is also important for thyroid  health.

I hope this is helpful but it is not medical advice.

Good luck on your continued journey!

Posterboy by the grace of God,

Thanks Posterboy, although I don't know if I have thyroid problems or if my fatigue is coming from somewhere else. My TSH and T4 levels have been normal, but the doctors I've been seeing haven't seen the need to test my T3 levels. They could be low, but it would be a very rare thing, so I'm going to keep looking elsewhere for the time being. I don't know, it could be something in the water or the apartment here in Jakarta.

I have been taking extra thiamine and magnesium, on top of the 50+ multis that I have been taking.

I'm waiting for my test results for B1, B3, calcium and magnesium to come back. If nothing unusual shows on those, I'm hoping I can get a referral to a neurologist for the tingling and fatigue and an ENT/EMT specialist for the mild but constant pain on the outside of my larynx.

cheers,

Marcel

 

[Posterboy]

Marcel g,

Based on your complaints/Symptoms.....I honestly don't know what is causing your issues?

I am going to suggest one or two more things that might help.

With B-Vitamins it is frequency more than amount that matters.

Begin taking the Magnesium and Thiamine frequently with meals.....and try adding Niacin (Low dose 100mg) or Niacinamide to that regimen as well!

I wrote a blog post about it that might help you (it explains) the proper way to take B-Vitamins.....specifically Niaicinamide in this case.....but it it is true for Thiamine as well....

For B-2 aka Riboflavin it will cause your urine to shine (glow) when you have enough of  it......if you can't change your urine to a bright yellow color within 6 hours of taking a MutliVitamin ....you are still low in Riboflavin.

When we get low in Magnesium, Thiamine, Niacinamide (Niacin) etc.....our body can no longer make enough energy to ward off disease...

See this hormones matter article about it that summarizes it well....

https://www.hormonesmatter.com/new-model-medicine/

See their note on the Mitochondria ......which the body needs to work correctly to function properly....

The B-Vitamins and Magnesium are needed for the Kreb's Cycle to work properly.

Anything that interferes with this (Krebs Cycle) essential process will lead to disease....

(Speaking of things in the water) .......you might not be that far off....

See this recent article that explains how "Forever Chemicals" like PFOA's akas POPs build up in the environment and affect our long term health.

https://www.medicalnewstoday.com/articles/chemical-pollutant-exposure-linked-to-celiac-disease-in-young-people

Celiac.com also did a nice summary article about this connection.

You can read it here....

I hope this is helpful but it is not medical advice.

Posterboy,

[marcel g]

Update:

I’ve retried @knitty kitty’s  technique of 1500mg/day of thiamine for 3 days, but it didn’t significantly change my fatigue level. Weirdly, I did feel like I had a bit more physical energy, but I was still fatigued. Still missed work and needed a lot of naps. Tingling and twitching didn’t change, as well as the lightheadedness.

I also got my latest blood tests back, calcium and magnesium are normal, B1 and B3 are quite a bit higher than normal. TSH also still normal. 

I’m going to try to get a referral to a neurologist next week. I’d like to know if what I have is MS or peripheral neuropathy, or at least have those things eliminated, or something else altogether.

cutting out gluten helped quite a bit with brain fog and irritability, and I felt like I was improving for a few weeks there, but it was a temporary respite, and I’ve started feeling worse again and the overall trend this year is gradually getting worse. 

thanks for all the info.

[knitty kitty]

@marcel g,

How are you doing?  I must apologize.  I have somehow missed reading your last post until now.  

You said "Weirdly, I did feel like I had a bit more physical energy..."

This is a positive response to thiamine supplementation!

I do hope you will reconsider supplementing with thiamine for a longer period of time.  Some people take more than 2000 mg.  Thiamine is safe and nontoxic.  

High Calorie Malnutrition is described by Dr. Derrick Lonsdale and Dr. Chandler Marrs on her website hormonesmatter.com.

Their article....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

Basically High Calorie Malnutrition is consuming an abundance of calories, but not enough vitamins like thiamine needed to turn the food into energy.  High dose Thiamine and B Complex supplements help correct this.  High Dose Thiamine supplementation needs to continue for several months for full benefits.

High Calorie Malnutrition can occur without Celiac Disease or with Celiac Disease.  Thiamine deficiency can progress to Gastrointestinal Beriberi, which has symptoms common in Celiac Disease.  

I do hope you will try Thiamine supplementation again.  

I hope you're doing well.

Kitty