How long until brain fog lifted for you? + my story in short

[heyitsme]

Millenial, male. Silent celiac. No stomach issues ever. Diagnosed in summer 2020 after endoscopy which I decided to do after many months of unexplained mildly elevated liver enzymes (ALT 50-80). Marsh 3B. After going gluten-free enzymes went down (20). As you can see for me it's different cause the effect of eating can show weeks/months later. Follow up endoscopy in october 2021 showed Marsh 0, but still mild inflammation in duodendum. (Maybe cross contamination?). 

Summer 2022. I suddenly feel dizzy out of nowehere, lightheaded plus some panic. This "attack" lasts few minutes, it occurs multiple times that day. Next day everything is normal. Same thing 2 more times within next week but after 3rd time, the dizziness doesnt stop after sleeping. It's there, constantly. And it's been there with me since then. This is my main issue. The "dizziness" transformed more into "brain fog" I think. But hasnt lifted one bit. It;s still as bad like in the beginning. I can't concentrate on things because of this. Had to leave work since day one (I was a software engineer) and now for almost 2 years live day by day, dan't make any plans, do only simple things, my brain feels like it's fried. Like I can't process things the way I used to. I do only easy stuff. Feel like I live in some mental prison. I want to do things but I just can't mentally. 

For over a year I havent suspected celiac actually. I thought it was the eyes firstly so I went to all eye docs possible, checked for BVD as well. Nothing conclusive. Went to neuros, ENTs, spent thousands, travelled hundreds of kilomteres, visited dozens of docs, tested everything possible. All vitamins, minerals good, all thyroid tests good, all autoimmune markers negative. Was even hospitilized once after showing the doc my eyes VEP result and they even did a spinal tap. All clear. Few months back I even thought it's caused by cervical spine. But that idea also was ditched after no results with exercises. I also tried a few SSRI meds, with zero effect. Went to psychologist (some docs suggested that route) and nothing, I didnt really have anything to talk about to them, I really lived chilled life before it all happened.

So it got me thinking, in late 2023. And I realized I wasnt really gluten-free 100%. Before I though that french fries in McDonald were gluten-free, you know what I mean. Apparently they are not. And sauces. Meat in kebab. In general I ate some gluten here and there, for sure. Like 2-3 times a week small amount was digested. The problem for me was I never had any immediate effects because of it. Even after few days, there was no issue. The only symptom for me before was elevated ALT which was totally fine when the brain fog started, so I couldnt suspect that gluten was the issue. Whats worse I later (during most of 2023) even consciously ate small amounts of gluten here and there. These were tiny amounts but now I think they sustained my brain fog. And I did that consciously because my life since that brain fog started is so miserable that I allowed myself to eat stuff I havent eaten before, mainly chocolate. So as you can see this is very unfortunate combo of factors that led to my current situation. I actually did endoscopy in january this year and it showed Marsh 0, but still little inflammation in duodendum. 

In the meantime another symptom started to occur, exactly one year after the start, so in August 2023. Heart palpitations (racing heart) attacks. Totally out of nowhere, and they started to occur daily. Very uncomfortable, felt a little panic-ish as well when they occured. Betablocker fixed them, but as soon as I went off beta blocker they started to occur again after just 2 days. Tried it 5 times. Of course I went to cardio doc, but they didnt find anything wrong with heart. Did 26 hours holter, also heart USG. All clear.

Anyway, at the end of 2023 I decided to go 100% gluten-free. I run out of ideas as to what could cause my issues. Month later I decided to ditch all grains, just to be safe. And watched out for every product that could be cross contaminated, like cocoa powder I also ditched. So only veggies, fruits, meat, fish, eggs, some kefir. One month after that I decided to do another experiment with betablocker and stopped taking it. To my surprise, palpitations didnt occur! I was thrilled! Sadly they occured 12 days later, but only for one day. After that I had another 12 day break until they occured again and today is 20th day since then that I mark as non-palpitations day. So it's a record. I just feel some skipped beat every day or two, but that's minor compared to that racing heart attack.  

So this give me hope as you can see. Im pretty sure that if I started to talk about this to "real" docs they would look at me like I was crazy. But it's the fact. Looks like 100% gluten-free diet got rid of my heart issues. I haven't done anything else to suspect otherwise. Heart issues were not okay but the main problem is still there. Brain fog. It hasn't improved a bit. And it's been over 3 months of strict gluten-free diet and over 2 months of super strict gluten-free diet (like paleo style). 

So that's more or less it. Just wanted to share my story in its current state. I really have no life now beacuse of the brain fog and this gluten-free thing is my only hope. Wonder if anybody relates. Wonder if improving was more smooth gradual or sudden spikes of improvement for you. And most importantly how long until you finally felt fine.  

 

[trents]

Welcome to the forum community, @heyitsme! Some parallels between your experience and mine in that I was a silent celiac and what led to my diagnosis back around 2000 was 7 years of mildly elevated liver enzymes that could not be explained by the usual causes. I am no longer "silent" as any significant exposure to gluten after being gluten free all these years now makes me violently ill. I am not in the super sensitive crowd such that I have to be almost paranoid about the possibility of cross contamination but even an appetizer size cup of egg drop soup with soy sauce in it can make me very sick now. What I find interesting in your narrative is that you now have a Marsh 0 in the small bowel lining but still have mild inflammation in the duodenum. We get that pattern reported a lot from new forum members who are being evaluated for celiac disease and the diagnosis usually turns out to be inconclusive from the physician's standpoint. It usually happens when blood test antibody scores were borderline. So, I'm just thinking that since you have a confirmed diagnosis of celiac disease this might be helpful to those forum participants who are stuck in that "tweener" space of diagnosis. But I have digressed. 

The complicating factor in your situation seems to be the "cheating" pattern that has persisted since diagnosis until more recently. I'm not sure you can draw any hard and fast conclusions yet. Are you on any vitamin and mineral supplements?

[heyitsme]

@trents Thanks for the reply. So sensitivity might change and you can actually go from silent to non silent. I wonder if other way around is also possible. I wonder what happens if somebody is 100% strict for let's say 10 years and then they start incorporating small amounts. Do we have data/stories with such cases?  

I wouldn't call it cheating though. Only in 2023 I started to eat some chocolate and meat with wheat coating only because I never had immediate effect and my ALT which was indicator of the state of my small intestine before were completely normal now. 

I guess you are right, it's a bit too early for conclusions. Only methylofolate for like 1,5 months now which looks like is the only thing that is able to increase my serum folate level which has always (for few years that I have started testing) been borderline low (about 5). I upped it to 9 now and plan to keep taking it until it's about 15. 

I guess I should give it like 3-5 more months before starting to worry. 

Haven't found too many posts about cases with brain fog here. Don't know why as apart from belly issues it looks like it's one of most occuring symptoms.

[heyitsme]

@trents The question I ask myself recently is are there any ways of speeding up the recovery process. However in my case it's not about recovering the lining, as it's already in pretty good state, but rather restoring the state of whatever is causing the brain fig. I would assume some part of nervous system is somehow damaged. Some neurotransmitters or something. God I would love to know the mechanisms of this. It looks like this is very cloudy area and medicine doesn't know a lot about it. 

Like should I try antiinflammatory diet on top of being gluten-free? Specific antiinflammatory supps? Like turmeric? CBD? Or if I start to exercise daily, will that speed up the recovery? These kind of questions... With food it's easier for me, with exercise not so much though, cause brain fog affects my ability to even do exercise.  

 

[trents]

It is common for silent celiacs to react (symptomatically) more strongly after going truly gluten free for a significant amount of time. Before diagnosis, when we are consuming gluten regularly, we force our bodies to tolerate it even though it is doing damage. When we go completely off of it, we lose that tolerance. However, as in your case, if someone is continuing to include gluten in their diet at lower levels, intentionally or unintentionally, they keep that tolerance and remain silent. Yes, I imagine it would work the other way around if a previously celiac started to slowly reintroduce gluten into their diet. They might become silent again. But I'm not sure of that. Never seen data on it. No one wants to be that guinea pig. My sense is that those with both celiac genes are the more sensitive ones and those with only one gene are in the silent group. But again, that is not data based, just an impression I have gotten from reading many posts on this forum for a period of years.

B vitamins seldom show up as isolated deficiencies. They work together as a group and generally they are deficient as a group. Vitamin blood testing can be of very limited value in spotting deficiencies as they only measure the amount that is circulating, not what is actually being taken up by the cells and tissues. Symptoms are probably a more reliable indicator. I would like to encourage you to start taking a high potency B-complex, 5000IU of D3 daily, magnesium glycinate and zinc for several months and see if your brain fog improves. Make sure all vitamins and supplements are gluten free.

[heyitsme]

@trents Thanks, I didnt see a need to take B12 and D because they are always on pretty good level. I actually had very high B12 (1200), over the normal range, probably due to almost meat only diet I experimented with before brain fog issues started. However folate is different story because it's only found in liver in meat which isint something I ate often. In general it looks like I have trouble processing folate, recently tested it with plenty of spinach I was eating which did nothing for my folate levels. It looks like that methylofolate is the only thing that works. I guess it won't hurt supplementing though. I tried before, but that was when I was still having those tiny amounts of gluten. So now the vitamins may be processed differently. It's actually good idea to try and see. 

I'll try that

 

[trents]

Some people have genetic deficiencies that require them to use methylated forms of vitamins. B vitamins are water soluble so excess is excreted in our urine and is nontoxic. You can't overdose on the common forms of them. There is vitamin D deficiency in many parts of the world either because of lack of sunshine (climate factors) or indoor living. Our ancestors had to work outdoors for hours everyday to produce their food and got plenty of sunshine.

[Scott Adams]

I just want to mention the possibility for those who had covid-19, it appears that brain fog is also a symptom of long-term covid:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10665893/

It's definitely associated with untreated celiac disease, but wanted to at least mention this because there can also be other causes.

[knitty kitty]

Welcome to the forum, @heyitsme!

Your experiences and symptoms sound similar to mine when I had Thiamine deficiency and other nutritional deficiencies.  You can read more of my story in my blog.  

Elevated liver enzymes are a symptom of Thiamine deficiency.

Dizziness, especially after changing position could be Postural Orthostatic Tachycardia Syndrome, also caused by Thiamine deficiency.  Tachycardia, heart racing or fluttering or skipping beats, is a symptom of Thiamine deficiency.

Brain fog, altered brain function, lack of focus, inability to concentrate, is caused by Thiamine deficiency.  Panic attacks are also symptoms of Thiamine deficiency.  Thiamine is needed to make important neurotransmitters. 

Eye problems can be caused by Thiamine deficiency.  Difficulty focusing, blurry vision, and uncontrolled eye movements are seen in Thiamine deficiency.

Thiamine deficiency causes visible changes in the brain.  MRIs will show white spots in certain areas of the brain.  Brain damage can be permanent if thiamine deficiency is not corrected quickly.

Thiamine and Folate share the same transporters which allow them to get into cells.  When there's a Thiamine deficiency, the transporters shut down and neither thiamine nor folate can enter cells.  To get the transporters to turn back on, high dose Thiamine is needed.  

Blood levels of vitamins may be within "normal" levels, but there can still be a functional deficiency because the vitamins are not getting inside the cells where they are used.  

Thiamine deficiency symptoms can wax and wane mysteriously depending upon the amount of Thiamine absorbed from the daily diet.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function and improvement in symptoms.  

Meat is high in Thiamine, so your high meat Paleo diet brought you improvement. 

Thiamine needs magnesium to make life sustaining enzymes.  Thiamine interacts with the seven other B vitamins and magnesium in producing energy and enzymes needed for cell and organ functions.  All eight B vitamins and magnesium need to be taken with high dose Thiamine.  Many thiamine deficiency symptoms can overlap with deficiencies in other B vitamins because they all work together.  Thiamine is the B vitamin that runs out first because it cannot be stored for long (3 to 18 days) and our body needs so much, especially if we're physically sick, emotionally stressed, or physically active or exercising in hot weather.

High dose Thiamine can be administered by IV by doctors.  High dose Thiamine is safe and nontoxic.  Unfortunately, doctors don't recognize these varied symptoms of Thiamine deficiency.  Most cases of Thiamine deficiency are diagnosed postmortem.

I studied Nutrition before earning a degree in Microbiology, so I understand how vitamins from food are utilized inside the body.  I took high dose Thiamine after my doctors gave up on me.  I took over-the-counter thiamine supplements to correct my deficiency.  I had improvement within an hour.  The World Health Organization says that a thiamine deficiency can be diagnosed if health improvements are seen after supplementing with Thiamine.  

An Erythrocyte Transketolase test is better at noting a thiamine deficiency.  

Thiamine is safe and nontoxic in high doses.  No harm, no foul in trying it.  

References:

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Neuro-ophthalmic Manifestations of Wernicke Encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7335288/

Visual loss and optic nerve head swelling in thiamine deficiency without prolonged dietary deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

Thresholds and Tipping Points in Thiamine Deficiency Syndromes

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

Edited April 9 by knitty kitty
Typo

[heyitsme]

"Meat is high in Thiamine, so your high meat Paleo diet brought you improvement. " Well, if you read my next answer I  say there that prior to brain fog issues I was on meat only diet almost. Actually I tried carnivore to be honest. For like 9 months that led to the onset of symptoms I consumed massive amounts of beef. I rarely ate meat liver so I'm not sure about other important nutrients thought. However my blood levels of B1, B6 and B12 were normal. 

That said, I have experience with B1 deficiency, as 3-4 times in my twenties after parties with alcohol I had this unusual constant hangover that lasted for many days. It only always lifted after I got B1 injections for few days (my mom is a doc so I had easy access). It was not normal cause the amount of alcohol wasnt crazy high compared to others. It looks like I have some kind of susceptibility. Since then I always watch to not consume too much if any. Now after my celiac diagnosis and current issues I highly suspect that my nervous system is somehow compromised because of celiac and this susceptiblity is somehow caused by celiac disease, directly or indirecrtly. 

I indeed suspected B1 this time as well. But this hangover dizziness however was different than the brain fog I have now. It was w worse, and just a bit different in nature. I also tested serum B1 and it was ok. Plus I even got like 3 B1 injections again like year ago to test if maybe it was B1. And I had zero change. So that would indicate that it's not B1. 

But I don't have any hard evidence for what I said. It's just experience. I mean you could be right. I think what I can do is just take the supplements or even injections once again and see. Maybe now the reaction will be different since my body doesnt absorv gluten any more. I'll think about it, thanks. 

[heyitsme]

@Scott Adams@trents We can't edit our answers? 

[knitty kitty]

@heyitsme,

An Erythrocyte Transketolase test is a better method of testing for Thiamine deficiency.  

Thiamine deficiency correction needs Thiamine supplementation for longer than a few days.  

Thiamine in the form of Tetrahydrofurfuryl Disulfide (TTFD) (aka Allithiamine) can get into the brain easily and improves brain function better than Thiamine Hydrochloride in shots.  

Thiamine transporters shut down in deficiency, and blood levels can look normal because little thiamine is getting into cells, so blood levels look normal.  The Erythrocyte Transketolase test looks for the reactivity of Thiamine in the bloodstream.  

Chronic Thiamine deficiency outside of Alcoholism has different effects on the brain.

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

Thresholds and Tipping Points in Thiamine Deficiency Syndromes

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

Edited April 10 by knitty kitty
Typo

[heyitsme]

Lots of useful info, thanks @knitty kitty. It looks like Erythrocyte Transketolase test is not widely available though. 

[heyitsme]

@knitty kitty So instead of Thiamine Hydrochloride injections it's better to take Allithiamine from supplements? But you mentioned earlier that injections are also the way to go? What is it then? 

[heyitsme]

@knitty kitty Also do you think is it ok to take B1 in isolation or it's better to find B complex with TTFD?

[trents]

6 hours ago, heyitsme said:

@Scott Adams@trents We can't edit our answers? 

There is a very short time window for editing posts. This is to thwart spammers.

Physicians are trained to spot acute vitamin deficiency diseases like rickets and beriberi but not trained to spot the effects of sub acute deficiencies. 

Edited April 10 by trents

[knitty kitty]

@heyitsme,

No, the Erythrocyte Transketolase test is not widely available.  One of the labs that offered it closed due to Covid.  

The World Health Organization recommends taking high dose Thiamine and looking for symptom improvement.  

Different types of Thiamine have different doses.  Thiamine Hydrochloride is not well absorbed, so higher amounts are needed for passive diffusion into cells in order to turn transporters back on.  Benfotiamine and TTFD are able to penetrate the lipid layer of cells, so lower doses are needed.  Everyone is different, so try different combinations and and doses to find what works for you.  

Thiamine Hydrochloride 500-2000 mg; Benfotiamine 300-1200 mg; TTFD 200-500 mg.

Thiamine needs magnesium to make important enzymes, so a magnesium glycinate or magnesium threonate supplement is a good idea.  

Thiamine interacts with every other B vitamins, so a B Complex supplement should also be taken.  It's okay if thiamine HCl is in the B Complex.  Take Allithiamine in addition to the B Complex.  

Allithiamine can cross the blood brain barrier easily and is excellent for increasing brain function.  It's like an already active form of Thiamine the brain can use immediately.  Thiamine HCl and Benfotiamine need to be carried across the blood brain barrier.  Improvement is seen with any of these forms of Thiamine. 

For people who have altered brain function, getting any sort of Thiamine into the system quickly is important to prevent permanent damage.  Hence the recommendation to get IV thiamine if possible.  Wernicke's Encephalopathy is not fun.  For long term supplementation, Allithiamine and Benfotiamine.  

[heyitsme]

Permanent damange? Jesus I have this for 1,5 years now.  💀 Do you think I can take injections WITH Allithiamine? Is it too much?

[knitty kitty]

Remember that twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function?  You can be on that borderline between minimum sufficiency and deficiency for a long time, years.  

Try a combination of injections and Allithiamine.  See how it works for you.  I don't see anything problematic there.

Hiding in Plain Sight

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

 

Edited April 10 by knitty kitty
Typo