Need help/insight - Vitamin deficiency symptoms appeared after going gluten free.

[John117]

Okay so I'll put a tl;dr at the bottom, but if anyone out there wants to share insight or ideas as to what's going on, I figured I'd give as much of a clear picture as I can. Also, I want to say thank you to everyone here who shares and supports people. I've been here several times since my issues began, and a lot of you have helped me through some of my harder days without knowing it. 

So about 4 years ago, I started having stomach issues - as in I'd feel sick when I began to eat, had weird skin cysts (almost like hard zits) appear on my arms and generally just weird stomach sensations, on top of a lot of diarrhea.

I went to my family doctor, and he said due to my field of work it might be some stress and anxiety. He mentioned the skin issue was likely clogged pores. Prior to this issue I had also suffered from chronic migraines for many years. Some so debilitating I would vomit and felt like a giant knife was being jammed in my head.

I did scopes, blood work, even (due to head injury) had a CT scan at this time, and everything was coming back normal. 

I was relieved, obviously. Tried a PPI blocker for a few months, came off of it and still didn't really feel much better - but I began cutting out dairy and that helped the upper gastro symptoms immensely but I was till having diarrhea and lower bloating issues. 

And I lived like this, for about 3 more years.

Fast forward to summer 2021:

I start noticing my headache frequency increasing, diarrhea still common, skin cysts came back. I also began having intermittent aches and pains in my left shoulder blade, arm and leg. Eventually my shoulder ended up hurting all the time. I also noticed that my pinky toe didn't want to bend anymore as it had (without incurring any injury). My eye would get red  in some areas on it sometimes that would appear without any irritation. I thought maybe I had a pinched nerve or something going on, and the skin issue I thought was just maybe my pores acting up again. Except the diarrhea was still getting me. Did I have IBS? Well when I went digging, I quickly found out it was highly unlikely I did as I didn't really suffer from intense stomach pains.

Then comes what is possibly (I wish I was exaggerating) the worst period of time throughout my entire life in October of 2021. Sunday night, my wife and I go out - We ate dinner, had some drinks, came home with leftovers that I took to work! And the next day when I was eating my lunch, I had this really strong uncomfortable heart palpitation it felt like. It caught me off guard and kind of scared me. And then throughout the day I noticed I felt tight chested, and funny. Like when I would speak I'd run out of breath or my windpipe felt compressed. I legitimately thought "Maybe its bad indigestion." Except things started getting worse. I became dizzy and felt generally "off" for the next 3 days. On the third day I'm at work, and my heart is racing, and I'm feeling more and more ill to the point where my co-workers saw me and called an ambulance. I went to the hospital, they ran tests as they were concerned with my heart and found through bloodwork that I was generally healthy and that it was likely stress and anxiety (I regret informing them I have PTSD because then they just treated me like a mental health patient when I knew damn well that wasn't the current issue.)

SO, I go home - thinking okay maybe I've had a hard few months and this is just the climax. Even my wife, perplexed by how I could suddenly become so ill figured I was sort of breaking down... Hell, even I began to believe it. But some part of me knew something else was up. I knew all the previous symptoms were no longer just odd coincidence, and that my body must be manifesting some sort of physical distress from some actual physical cause. In 2 months I lost 25 lbs. I couldn't eat much, most things I ate made me feel worse... Lots more diarrhea, fatigue, bloating, chest tightness, etc. My head began to feel like there was a constant pressure on top of my skull. Not necessarily an ache, just a weird downward pressure.

As I became more ill, I visited the hospital several times and was turned away. I tested for celiac and it was negative. My doctor was at a loss, and put me on anti-depressants and ant-anxiety meds as I was becoming panicked and worried all the time, and my mind was splintering into some crazed irrational version of myself.  I had major difficulties being able to sleep - I'd start to doze and be like zapped awake from nothing. My heart rate was going super high, and anytime I laid down to rest I could hear my heart pounding through my ears. It was extremely hard and difficult for my family as I'm sure many of you can appreciate. 

We did scopes again but no biopsy was done when they were in there, but structurally at a glance apparently everything looked unremarkable. Did a CT angiogram to ensure no heart issues and they only noted mild narrowing of one artery from what they noted was an external source (so pressure from neighboring muscle or something) which I'm not surprised with all the tightness in my throat and chest I'd been feeling, that there might have been some compression.

But then in January of this year I found a practitioner online who heard my entire story similar to the above and was essentially like "I can fix you." Using some science and naturopathy, I did a stool test that showed my gut was all out of whack in terms of bacteria and most importantly that my Anti-gliadin immune response was over 500 U/L. And the number apparently caps out at 500. So this was the huge breakthrough I needed. I wish I had found out sooner, but as most of us know, the food reaction times aren't always immediate and as I've learned more recently, sometimes the worst symptoms don't show up for a few days. 

So anyway, if you're still reading thank you - I'm almost done I think lol.

I then immediately went gluten free (so back in January/Feb roughly)

And by that I mean I only really have just gone gluten free, as it's taken months to narrow down all the sources. And even when I try new things, I'm just learning that sometimes "Natural Flavours" could indicate barley or something. 

So here I am figuring I'm all good - No more problems! Right?

Ha, I wish.

About 2 months ago, I started noticing that during certain workouts my back was really shaky - and when I would come home from work, I felt really shaky (almost like low blood sugar) but I didn't understand why. I suspected possible weakness from all that I had gone through, but I was gaining weight back and feeling a little bit better with each week. Then I started waking up with my tongue feeling like it had been burned. Weird. So anyway I did the obvious and googled to see what it might be... It took me only a few minutes to find that b12 deficiency could lead to these sensations. 

I also noticed I develop mild tinnitus which was super frustrating, but I'm coping with it fairly well right now. On top of that, I noticed some of my skin above me eyelid starting to droop.

And one thing I forgot to mention earlier was that before I was REALLY sick, I was also getting regular red hot ear for some reason. And it had kind of faded when I was really sick, but now it was making a comeback.

So, again - frustrating that weird sensations began to manifest after I had hoped I was getting to a place of "normalcy".

But within a week I began supplement sublingual b12 in addition to a multivitamin. And what's strange is within that time, I started getting more intense headaches. No idea why, just noted they were really nasty. More intense than usual. But what was good was the tongue sensation went away, and my shakiness did as well - so I'm guessing it's exactly what I needed. I also reported this to my doctor and he did blood work but while I was already on the b12 for like 2 weeks, so it should fairly normal levels. But I understand it can take 6-12 months to replenish depleted stores.

But what perplexes me, and is ultimately what I hope someone can provide some insight into, is whether or not some increase in symptoms can occur while the body tries to normalize? 

I suspect neuropathy in a lot of areas (affecting my pink toe, the tongue, and shakiness stuff). I began getting eye floaters a lot too, which I understand could be from the eye inflammation but luckily my eye only goes red now if I get contaminated. 

In the last two weeks I have had some of the worst migraines I've ever had in my entire life... I almost went to the ER but tried to reassure myself it was likely a passing thing since no other symptoms were present. And then last night I noticed that some of the heartbeat in my hear sound had come back while I was sleeping. It wasn't super loud, but it was enough to notice and it got me worried. I hear it every now and then but it seemed like it was getting better and almost gone with the odd exception. But after the last migraine I had, I wonder if something structural is going on like vasculitis? Or is it possible the nerves are healing and now hypersensitive? I'm at a loss.

Overall I'm doing much better now, and psychologically I have been great overall... But this morning I was just crippled with worry. Is it an artery blockage? Is it a tumor? Am I at risk of suddenly keeling over? All those invasive thoughts stormed in and wouldn't leave and I have no idea why... I've calmed a bit now, but I'm still puzzled as to what might be pushing these more intense migraines when I'm not getting glutened.

 

Anyway, thanks so much for reading everyone. 

tl;dr: Gastro and system issues for a few years before getting REALLY sick for several months. Found out gluten was the culprit - likely became vitamin deficient as a result. Began taking supplements, but worried about vascular health due to possible inflammation of blood vessels. Taking b12 to help with neuropathy symptoms and multivitamins but migraines have been getting much more intense and some pulsatile tinnitus showed up again. Is this from nervous system sensitivity or something else?

Thanks!

   

[trents]

Welcome to the forum, John!

You frequently mentioned cutting out gluten and problems you perceive to be connected to gluten. You also say, "I did a stool test that showed my gut was all out of whack in terms of bacteria and most importantly that my Anti-gliadin immune response was over 500 U/L."

But what you do not say is whether or not you have been actually diagnosed with celiac disease or with NCGS (Non Celiac Gluten Sensitivity).

Have you had serum antibody testing done that is specific for celiac disease or have you had an endoscopy with biopsy done which is the gold standard for celiac disease diagnosis? These are the usual diagnostic procedures done when checking for celiac disease.

Are you taking any vitamin and mineral supplements besides B12?

Edited October 4, 2022 by trents

[John117]

Hey trents thanks for the reply!

So my blood test for celiac was negative. But the stool test showed high immune response. I was told its likely NCGS at first but when I kept having other symptoms like neuropathy and skin rashes, I asked my doc of its possible it was Celiac and the blood test maybe was wrong? He then suggested if it looks/quack like a duck its likely that so he'd operate and treat me as though I have celiac disease. He did not seem interested in pursuing further diagnostic tests... Maybe I should have pushed? During my scope they didnt take a biopsy which blew my mind - they were just checking for any structural issues. 

 

2 months ago I started taking b12 and a 3x day multivitamin. It helped a lot with my tongue numbness and shakiness, almost gone actually.. but then my migraines got incredibly worse and Im worried something may have happened internally.

I had a ct scan done about 5 years ago after a head jnjury and it was normal.

[trents]

Neuropathy is associated with both celiac disease and NCGS. We have lots of people on this forum who have NCGS who suffer from neuropathy. But looking at your symptoms in toto, there are a lot of things that suggest celiac disease and the nutritional deficiencies that invariably accrue from celiac disease. To your supplementation I would suggest adding a high potency B-complex, 5000IU of D3 and either magnesium glycinate or magnesium citrate. With your multivitamin you are probably not achieving therapeutic dosages. Make sure all supplements are gluten free. Costco's Kirkland Signature and Nature Made lines are good choices and they will state clearly on the bottle if they are gluten free.

Unfortunately, since you have been eating gluten free, retesting for celiac disease would not yield valid results. You would need to go back on regular amounts of gluten (2 slices of wheat bread daily or the equivalent) for 6-8 weeks before the antibody test and for two weeks for an endoscopy/biopsy. These are the Mayo Clinic guidelines for pretest gluten challenging. Have you looked into genetic testing to get a gauge on the potential for celiac disease?

Are you still eating dairy and oats? These cause some celiacs to react in the same way they do to gluten.

Hav

 

[knitty kitty]

What is in your 3x day multivitamin?  I'm curious about the ingredients and the forms of the vitamins in there and the amounts.

Can you post a picture of the label or a link?

Which antidepressants are you taking?  Any other meds? Supplements?

Can you ask your doctor about Gastrointestinal Beriberi?  

Thiamine deficiency can cause gastrointestinal symptoms like you describe.  It is frequently overlooked by doctors.  I've had Gastrointestinal Beriberi due to vitamin and mineral deficiencies and the symptoms sound similar.

Other symptoms of Thiamine deficiency include tachycardia, the increasing anxiety, panic attacks, PTSD, insomnia, mental alterations, tinnitus, ptosis (droopy eye lid), unintentional weight loss, feeling higher intracranial pressure, peripheral neuropathy, and more.

Those skin problems, the plugged pores, could be a form of Dermatitis Herpetiformis.  I've had this, too. 

What do you include in your diet?  You cut out dairy, so that's good.  Do you eat a lot of carbohydrates?

Hope we can figure out something.

[John117]

That's a lot of good advice thanks Trents ill definitely look into those supplements. I haven't looked into genetic testing - is it expensive/accurate? Dont know too much about it.

Also I cant stomach dairy so it's been long removed. Certified Gluten free oats I seem to tolerate but not sure if theyre contributing to these migraines or what. 

[John117]

2 hours ago, knitty kitty said:

What is in your 3x day multivitamin?  I'm curious about the ingredients and the forms of the vitamins in there and the amounts.

Can you post a picture of the label or a link?

Which antidepressants are you taking?  Any other meds? Supplements?

Can you ask your doctor about Gastrointestinal Beriberi?  

Thiamine deficiency can cause gastrointestinal symptoms like you describe.  It is frequently overlooked by doctors.  I've had Gastrointestinal Beriberi due to vitamin and mineral deficiencies and the symptoms sound similar.

Other symptoms of Thiamine deficiency include tachycardia, the increasing anxiety, panic attacks, PTSD, insomnia, mental alterations, tinnitus, ptosis (droopy eye lid), unintentional weight loss, feeling higher intracranial pressure, peripheral neuropathy, and more.

Those skin problems, the plugged pores, could be a form of Dermatitis Herpetiformis.  I've had this, too. 

What do you include in your diet?  You cut out dairy, so that's good.  Do you eat a lot of carbohydrates?

Hope we can figure out something.

Here is the link to the multivitamin i take: https://www.progressivenutritional.com/products/multivitamin-for-active-men

And fortunately I came off my antidepressants and was psychologically doing absolutely fine. Only time I got down was if i got glutened and it only lasted a few days before I came back to nornal thinking.

And today was the worst ive been but I can't think of any gluten source and didnt have any other known exposures so I suspected something physiological with the migraine may have causes something? Not sure.

And I eat carbs a fair amount but nothing too excessive I don't think. Bread once a day with a sandwich maybe or with breakfast. Sometimes potatoes and or gluten-free noodles. 

This thiamine deficiency with droopy lid is insane if thats something thats up... could it have been triggered by poor absorption from the past few years?

[trents]

I think genetic testing through 23andMe costs around $200 USD. It won't establish whether or not you have celiac disease but whether or not you have the genes that can potentially result in it. There are two primary genes that have been linked to the development of celiac disease. Most who have them don't develop celiac disease as it also requires some kind of stress trigger. But it may rule out celiac disease if you don't have either of the genes.

It isn't necessarily the cross contamination of oats from gluten containing grains that is the problem with oats. The oat protein itself is very similar to gluten and about 10% of celiacs react to it in the same way.

[John117]

Oh darn well maybe Ill do  trail run to get off them.

And the testing as well. I have kids and Im sure it would be helpful to know in case symptoms every crept up.

[trents]

2 minutes ago, John117 said:

This thiamine deficiency with droopy lid is insane if thats something thats up... could it have been triggered by poor absorption from the past few years?

Absolutely!

[trents]

Are you certain the multivitamin you are taking is gluten free? Wheat starch is sometimes used in pills and supplements as a filler. Not sure where you live but in the USA manufacturers of supplements are not required to report allergens I believe.

Do you still eat out?

[John117]

The bottle says gluten free and it lists only allergens as fish possibly.

I live in Canada so Im not sure how strict we are.

And I do not eat out at all. Well there's a specialty gluten free place near me where I've never had a problem with since its tacos and they're entire kitchen is gluten free.

But otherwise if I get my kids McDonald's I'm the type of guy that will wash my hands religiously after touching the takeout bags lol.

[knitty kitty]

@John117,

Do you have a problem with soy?  Some do.  It's in your vitamin supplement.  Seems fine.  Still, you might try high dose Thiamine (Benfotiamine 100 mg with each meal) and see if it helps.  Thiamine is nontoxic and water soluble, so no harm to try.  

Yes, Thiamine insufficiency can wax and wane for years.  Symptoms fluctuate with dietary sources of Thiamine.  

It's crazy with the droopy eye thing, yes.  I've had it.

Interesting reading for you...

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

[John117]

Im honestly really happy i mentioned the eye droop thing.

Im definitely gonna start on some higher doses of b1 and magnesium as well and maybe even some vitamin D.

I ended up reading a lot about thiamine and found that deficiency can cause abdominal discomfort which I still periodically get from time to time even with gluten-free - and likely due to the low stomach acid it causes which my practitioner even suspect I had and treated me for but didnt know a root cause.

I also read the trigeminal nerve is affected by low thiamine and I wonder if thats whats exacerbating my migraines. 

Also parts of my feet experience numbness at times and apparently thats another thing. So much like the obvious b12 deficiency symptoms, it appears the remaining stuff may indeed be a lack of a few other things that resulted from malnutrition due to being ill for so long in combination with a diet that is gluten free and likely missing minerals and other things I used to eat regularly before going gluten-free.

Ill definitely check back in a few weeks with an update but this seems like it might be the right direction to head in!

Also - is the Benfotiamine you mentioned absorbed ok? I take b12 sublingual because I wasnt sure if I was having absorption issues.

But seriously thank you so much for sharing! Lots of good stuff from this thread - you folks are awesome. <3

[knitty kitty]

Gastrointestinal beriberi = abdominal discomfort. Yes.

Low stomach acid is due to thiamine deficiency.  Yes.

Try some Riboflavin B2 for the migraines.

Numb feet =  Thiamine, niacin ( B3), Pyridoxine (B6) and B12 helps here.

B12 need Folate B9 to work properly.

Benfotiamine is absorbed fine.  I take mine at beginning of meals and magnesium glycinate at the end of meals.  (Magnesium and calcium after meals help prevent Gerd.)

Yes, do keep us updated on your progress! 

P.S. Adding a B Complex might be a good idea in addition to your multivitamin.

Edited October 5, 2022 by knitty kitty
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[GF-Cate]

12 hours ago, John117 said:

 

You mentioned PTSD & based on several of your symptoms - if you were/are in the military have you considered the possibility of heavy metal poisoning? Or another type of job that may have exposed you? Many (especially functional medicine doctors) believe heavy metal poisoning can trigger/exacerbate autoimmune diseases.

Some of your symptoms could point to hypoglycemia/blood sugar issues/diabetes, so worth getting your levels tested to rule out. 

If it is celiac or NCGS, you may need to be more gluten-free than you are to truly heal, scrutinizing everything that you consume and any possible sources of cross-contamination. For some (like me) it takes switching to a gluten-free household, eliminating other food sensitivities and correcting nutritional deficiencies before full healing can happen. 

If you are still taking the prescription meds you mentioned, be sure those (and any over the counter meds) are gluten-free as well. Not sure of the regulations on that in Canada (in the US meds can have gluten and it can be hard yo get a straight answer from manufacturers), but the Canadian Celiac Assoc may have more info. 

Others already gave you great advice on correcting nutritional deficiencies & being sure those supplements are indeed gluten-free. Check out the range of common deficiencies in celiac and be sure to get blood tested to monitor levels for things like iron & vita D, etc. 

In terms of celiac testing, many docs don't know to run a full celiac panel, so even if one test was negative, others can be positive (and then an endoscopy would need to be with samples for a definitive diagnosis). Additional celiac blood antibody testing would require resuming eating gluten daily for 6-8 weeks, serving equivalent to 2 slices wheat bread each day. 

The test you had - AGA test -"has a low diagnostic accuracy and is considered outdated." This is a good overview of current celiac diagnostic testing. 

Targeted Genomics and other mail-order labs also offer testing for celiac genes. For the gene test, you do *not* need to be consuming gluten, but it is not a diagnostic test - just tells you if you carry the genes, not if you have active celiac. 

Whatever the root cause(s), it does seem with all your symptoms you should definitely continue to seek additional medical care and testing to try to get to the bottom of it. Hopefully you can figure out what's going on and get some relief. 

[Wheatwacked]

I had to keep increasing vitamin D with no noticible effect until the third day at 10,000IU a day the effect kicked in and totally changed my sense of well being and mood and a case of long term Seasonal Affective Disorder no longer bothers me. I seriously looked at the bottle and exclamined: This is sunshine in a bottle!". If I stop taking it my blood level drops at 7 ng/ml in only 3 weeks.

I have been taking B1 up to 2000 mg a day with no real effect. Just started 2000 mg twice a day (4000 mg a day) and my energy skyrocketed. 

 

 

 

[Rogol72]

On 10/5/2022 at 12:44 AM, John117 said:

Im honestly really happy i mentioned the eye droop thing.

Im definitely gonna start on some higher doses of b1 and magnesium as well and maybe even some vitamin D.

I ended up reading a lot about thiamine and found that deficiency can cause abdominal discomfort which I still periodically get from time to time even with gluten-free - and likely due to the low stomach acid it causes which my practitioner even suspect I had and treated me for but didnt know a root cause.

I also read the trigeminal nerve is affected by low thiamine and I wonder if thats whats exacerbating my migraines. 

Also parts of my feet experience numbness at times and apparently thats another thing. So much like the obvious b12 deficiency symptoms, it appears the remaining stuff may indeed be a lack of a few other things that resulted from malnutrition due to being ill for so long in combination with a diet that is gluten free and likely missing minerals and other things I used to eat regularly before going gluten-free.

Ill definitely check back in a few weeks with an update but this seems like it might be the right direction to head in!

Also - is the Benfotiamine you mentioned absorbed ok? I take b12 sublingual because I wasnt sure if I was having absorption issues.

But seriously thank you so much for sharing! Lots of good stuff from this thread - you folks are awesome. <3

I agree. The knowledge of the Admins and Mods here is incredible. Thiamine is a big one as it's hard to for Coeliacs to get it in sufficient amounts from food. I was taking 200mg of Magnesium Glycinate which kinda worked but since cranking up to 400-500mg daily in split doses, that has really helped. Hope you feel better soon.

[knitty kitty]

@Wheatwacked,

What form of B1 Thiamine are you taking?

[rrmac]

On 10/4/2022 at 8:43 AM, John117 said:

Okay so I'll put a tl;dr at the bottom, but if anyone out there wants to share insight or ideas as to what's going on, I figured I'd give as much of a clear picture as I can. Also, I want to say thank you to everyone here who shares and supports people. I've been here several times since my issues began, and a lot of you have helped me through some of my harder days without knowing it. 

So about 4 years ago, I started having stomach issues - as in I'd feel sick when I began to eat, had weird skin cysts (almost like hard zits) appear on my arms and generally just weird stomach sensations, on top of a lot of diarrhea.

I went to my family doctor, and he said due to my field of work it might be some stress and anxiety. He mentioned the skin issue was likely clogged pores. Prior to this issue I had also suffered from chronic migraines for many years. Some so debilitating I would vomit and felt like a giant knife was being jammed in my head.

I did scopes, blood work, even (due to head injury) had a CT scan at this time, and everything was coming back normal. 

I was relieved, obviously. Tried a PPI blocker for a few months, came off of it and still didn't really feel much better - but I began cutting out dairy and that helped the upper gastro symptoms immensely but I was till having diarrhea and lower bloating issues. 

And I lived like this, for about 3 more years.

Fast forward to summer 2021:

I start noticing my headache frequency increasing, diarrhea still common, skin cysts came back. I also began having intermittent aches and pains in my left shoulder blade, arm and leg. Eventually my shoulder ended up hurting all the time. I also noticed that my pinky toe didn't want to bend anymore as it had (without incurring any injury). My eye would get red  in some areas on it sometimes that would appear without any irritation. I thought maybe I had a pinched nerve or something going on, and the skin issue I thought was just maybe my pores acting up again. Except the diarrhea was still getting me. Did I have IBS? Well when I went digging, I quickly found out it was highly unlikely I did as I didn't really suffer from intense stomach pains.

Then comes what is possibly (I wish I was exaggerating) the worst period of time throughout my entire life in October of 2021. Sunday night, my wife and I go out - We ate dinner, had some drinks, came home with leftovers that I took to work! And the next day when I was eating my lunch, I had this really strong uncomfortable heart palpitation it felt like. It caught me off guard and kind of scared me. And then throughout the day I noticed I felt tight chested, and funny. Like when I would speak I'd run out of breath or my windpipe felt compressed. I legitimately thought "Maybe its bad indigestion." Except things started getting worse. I became dizzy and felt generally "off" for the next 3 days. On the third day I'm at work, and my heart is racing, and I'm feeling more and more ill to the point where my co-workers saw me and called an ambulance. I went to the hospital, they ran tests as they were concerned with my heart and found through bloodwork that I was generally healthy and that it was likely stress and anxiety (I regret informing them I have PTSD because then they just treated me like a mental health patient when I knew damn well that wasn't the current issue.)

SO, I go home - thinking okay maybe I've had a hard few months and this is just the climax. Even my wife, perplexed by how I could suddenly become so ill figured I was sort of breaking down... Hell, even I began to believe it. But some part of me knew something else was up. I knew all the previous symptoms were no longer just odd coincidence, and that my body must be manifesting some sort of physical distress from some actual physical cause. In 2 months I lost 25 lbs. I couldn't eat much, most things I ate made me feel worse... Lots more diarrhea, fatigue, bloating, chest tightness, etc. My head began to feel like there was a constant pressure on top of my skull. Not necessarily an ache, just a weird downward pressure.

As I became more ill, I visited the hospital several times and was turned away. I tested for celiac and it was negative. My doctor was at a loss, and put me on anti-depressants and ant-anxiety meds as I was becoming panicked and worried all the time, and my mind was splintering into some crazed irrational version of myself.  I had major difficulties being able to sleep - I'd start to doze and be like zapped awake from nothing. My heart rate was going super high, and anytime I laid down to rest I could hear my heart pounding through my ears. It was extremely hard and difficult for my family as I'm sure many of you can appreciate. 

We did scopes again but no biopsy was done when they were in there, but structurally at a glance apparently everything looked unremarkable. Did a CT angiogram to ensure no heart issues and they only noted mild narrowing of one artery from what they noted was an external source (so pressure from neighboring muscle or something) which I'm not surprised with all the tightness in my throat and chest I'd been feeling, that there might have been some compression.

But then in January of this year I found a practitioner online who heard my entire story similar to the above and was essentially like "I can fix you." Using some science and naturopathy, I did a stool test that showed my gut was all out of whack in terms of bacteria and most importantly that my Anti-gliadin immune response was over 500 U/L. And the number apparently caps out at 500. So this was the huge breakthrough I needed. I wish I had found out sooner, but as most of us know, the food reaction times aren't always immediate and as I've learned more recently, sometimes the worst symptoms don't show up for a few days. 

So anyway, if you're still reading thank you - I'm almost done I think lol.

I then immediately went gluten free (so back in January/Feb roughly)

And by that I mean I only really have just gone gluten free, as it's taken months to narrow down all the sources. And even when I try new things, I'm just learning that sometimes "Natural Flavours" could indicate barley or something. 

So here I am figuring I'm all good - No more problems! Right?

Ha, I wish.

About 2 months ago, I started noticing that during certain workouts my back was really shaky - and when I would come home from work, I felt really shaky (almost like low blood sugar) but I didn't understand why. I suspected possible weakness from all that I had gone through, but I was gaining weight back and feeling a little bit better with each week. Then I started waking up with my tongue feeling like it had been burned. Weird. So anyway I did the obvious and googled to see what it might be... It took me only a few minutes to find that b12 deficiency could lead to these sensations. 

I also noticed I develop mild tinnitus which was super frustrating, but I'm coping with it fairly well right now. On top of that, I noticed some of my skin above me eyelid starting to droop.

And one thing I forgot to mention earlier was that before I was REALLY sick, I was also getting regular red hot ear for some reason. And it had kind of faded when I was really sick, but now it was making a comeback.

So, again - frustrating that weird sensations began to manifest after I had hoped I was getting to a place of "normalcy".

But within a week I began supplement sublingual b12 in addition to a multivitamin. And what's strange is within that time, I started getting more intense headaches. No idea why, just noted they were really nasty. More intense than usual. But what was good was the tongue sensation went away, and my shakiness did as well - so I'm guessing it's exactly what I needed. I also reported this to my doctor and he did blood work but while I was already on the b12 for like 2 weeks, so it should fairly normal levels. But I understand it can take 6-12 months to replenish depleted stores.

But what perplexes me, and is ultimately what I hope someone can provide some insight into, is whether or not some increase in symptoms can occur while the body tries to normalize? 

I suspect neuropathy in a lot of areas (affecting my pink toe, the tongue, and shakiness stuff). I began getting eye floaters a lot too, which I understand could be from the eye inflammation but luckily my eye only goes red now if I get contaminated. 

In the last two weeks I have had some of the worst migraines I've ever had in my entire life... I almost went to the ER but tried to reassure myself it was likely a passing thing since no other symptoms were present. And then last night I noticed that some of the heartbeat in my hear sound had come back while I was sleeping. It wasn't super loud, but it was enough to notice and it got me worried. I hear it every now and then but it seemed like it was getting better and almost gone with the odd exception. But after the last migraine I had, I wonder if something structural is going on like vasculitis? Or is it possible the nerves are healing and now hypersensitive? I'm at a loss.

Overall I'm doing much better now, and psychologically I have been great overall... But this morning I was just crippled with worry. Is it an artery blockage? Is it a tumor? Am I at risk of suddenly keeling over? All those invasive thoughts stormed in and wouldn't leave and I have no idea why... I've calmed a bit now, but I'm still puzzled as to what might be pushing these more intense migraines when I'm not getting glutened.

 

Anyway, thanks so much for reading everyone. 

tl;dr: Gastro and system issues for a few years before getting REALLY sick for several months. Found out gluten was the culprit - likely became vitamin deficient as a result. Began taking supplements, but worried about vascular health due to possible inflammation of blood vessels. Taking b12 to help with neuropathy symptoms and multivitamins but migraines have been getting much more intense and some pulsatile tinnitus showed up again. Is this from nervous system sensitivity or something else?

Thanks!

   

Hi John

Have you been tested for thyroid disease especially for antibodies which would indicate Hashimoto’s Thyroiditis. 
 

It’s an auto immune disease that often comes with celiac’s disease and they don’t usually test men as it’s more prevalent in women. 
 

The symptoms can wax and wane and can include all the symptoms you mentioned. 
 

Sorry you’re having such a hard time and hope you find answers and feel better soon

[NNowak]

Your efforts are good, but the form of your supplements need guidance. I’ve experienced much of the same as you (tinnitus, heartbeat in the ear, etc, etc). The only way to properly measure Folate and B12 are to include MMA and homocysteine at the same time. These additional serum markers will show what is available at the cellular level. There are many polymorphisms that compromise methylation, preventing the B’s and D3 from becoming available. There are specific forms of B vitamins as well as a specific ratio of D, K, A, Magnesium, Calcium and various types of choline (dependent upon polymorphisms) required for adequate methylation. I highly recommend you work with a naturopathic doctor and seek help with your symptoms/supplements. You are getting nothing from your current regimen, and throwing micronutrients at your body without guidance of labs and a professional to monitor your status is irresponsible/dangerous. 
 

I hope you get some answers soon. 

[Wheatwacked]

On 10/8/2022 at 7:10 AM, knitty kitty said:

What form of B1 Thiamine are you taking?

Solgar B1 as Thiamine HCL, 500 mg per cap. I am taking 2000 mg three times a day and it seems to be improving vision issues and peripheral neurapathy and stamina. It seems like my trigger point is 6000 mg/day. I am hoping that between the increase in prednisolone to 15 mg and the B1 it will pull my glucose and A1C back into normal territory. Fasting blood tests have drifted into the firmly diabetic range (124 and greater than 6.5) over the past year. At 1000 mg B1 it did not affect glucose so I hope 6000 mg will. Blood tests next month. Standing from a squat is improved.

[knitty kitty]

@Wheatwacked,

I took high doses Thiamine Hydrochloride like you are doing, but I found with the fat soluble forms, benfotiamine and allithiamine, I was able to take those forms at lower dosages and continued to have health benefits and improvements.  

Also be sure you take Magnesium, as it provides the spark for Thiamine in any form to work properly.  

Benfotiamine has been very helpful in keeping my blood glucose levels down.

I'm so glad you're having such good improvement in your health!

[Wheatwacked]

The benfotiamine makes sense because it would not be cleared as quickly. I am drinking 4 or more glasses of whole milk a day to "build strong bones and a healthy body" so theres my calcium, magnesium, potassium, vitamin A and more. Really seems to be helping. I buy 1 gal commercial whole milk and 1/2 gal 100% pasture fed whole milk to keep costs down. I figure that combined it keeps the omega 6 down to a level that doesn't bother me.  Often have it with Ovaltine for the chocolate and Inulin for fiber.  I have also discovered the wonders of canned vegetables. I cycle through carrots, string beans, small potatoes, corn, chick peas and peas.  Between 2 and 4 15 ounce cans a day. Not the flavored stuff, just plain vegetables open the can, rinse well and drain and saves all that prep work. 

[Posterboy]

John117 et Al,

Here is a blog post that might help you....

When I first wrote this it caused some consternation at the time......but the research on Celiac disease is now begining to recognize many of the Vitamin deficiencies that occur with a Celiac disease diagnosis....

Knitty Kitty has given you good advice.....she know Vitamins because she has to supplement with many of them to  help her commorbid Vitamin deficiences...

On 10/4/2022 at 7:02 PM, knitty kitty said:

Gastrointestinal beriberi = abdominal discomfort. Yes.

Low stomach acid is due to thiamine deficiency.  Yes.

Try some Riboflavin B2 for the migraines.

Numb feet =  Thiamine, niacin ( B3), Pyridoxine (B6) and B12 helps here.

B12 need Folate B9 to work properly.

Benfotiamine is absorbed fine.  I take mine at beginning of meals and magnesium glycinate at the end of meals.  (Magnesium and calcium after meals help prevent Gerd.)

Yes, do keep us updated on your progress! 

P.S. Adding a B Complex might be a good idea in addition to your multivitamin.

For your Migraines try some B-2.

Here is also some research that might also help you with your migraines!

Entitled "Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine (including Riboflavin)"

https://pubmed.ncbi.nlm.nih.gov/34959985/

quoting from the abstract

"The nutrients that can be considered to supplement the diet to prevent and/or ameliorate migraine are riboflavin, thiamine, magnesium ions, niacin, carnitine, coenzyme Q10, melatonin, lipoic acid, pyridoxine, folate, and cobalamin. They can supplement a normal, healthy diet, which should be adjusted to individual needs..."

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

Good luck on your continued journeys in life!

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

Posterboy by the grace of God,