Still unsure.....

[badastronaut]

Dear forum members,

I’m still trying to find out whether or not I actually have gluten sensitivity or not. Recent blood test showed a slightly elevated Bilirubine and Lipase but an abdominal ultrasound showed no problems with the liver or pancreas. My zinc and folic acid where both too low. When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal. I also have been quite anxious and little bit down for quite some time now and it seems to correlate with my gluten intake. The problem is that my colonoscopy showed no damage to my gut and my blood test for celiac always come back negative. Can you be gluten sensitive without damage to your villi? (I believe that’s what is normally seen in celiac disease).

Thanks for helping! I don’t seem to get anywhere with my doctor so I thought I’d give this forum another try.

 

[Scott Adams]

It sounds like you're navigating a challenging and frustrating situation, and it's understandable why you'd seek clarity. Based on what you’ve described, it’s possible to have gluten sensitivity without the hallmark villous atrophy seen in celiac disease. This condition is often referred to as non-celiac gluten sensitivity (NCGS). Unlike celiac disease, NCGS does not cause the autoimmune damage to the small intestine that’s detectable through a biopsy, and it won’t show up on standard celiac blood tests. However, symptoms like gastrointestinal distress, changes in stool, and even mood issues, such as anxiety or feeling down, have been reported by others with gluten sensitivity.

Your experience with mucus in your stool, stool consistency changes, and mood correlation with gluten intake could be indicative of NCGS. The low levels of zinc and folic acid you mentioned might also hint at some malabsorption issues, even if the root cause isn't celiac disease. It’s worth noting that other conditions, like irritable bowel syndrome (IBS) or a sensitivity to FODMAPs (a group of fermentable sugars in many foods, including wheat), can sometimes mimic gluten sensitivity.

Since your symptoms seem to improve when you avoid gluten, it may be worth continuing a gluten-free diet to see if it helps you feel better overall. You might also consider working with a dietitian who specializes in gastrointestinal health to rule out other potential triggers and ensure your diet is balanced. If you’re still struggling to get answers from your doctor, seeking a second opinion from a gastroenterologist might also help you move forward. You're not alone in this, and I hope you can find some relief and clarity soon!

[knitty kitty]

Hello, @badastronaut,

I reread your last post on your previous thread...

"Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks. 

"Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore). 

"What to do??? Could this be gluten related?"

 

Your bilirubin is high.  The liver breaks down bilirubin.  The liver needs Thiamine to break down bilirubin.  Without sufficient Thiamine, bilirubin is not broken down and escapes into the bloodstream.

High levels of bilirubin suppress the immune system.  High levels of bilirubin suppress the production of white blood cells, including anti-gluten antibodies.  The suppression of your immune system by high bilirubin could be the explanation for false negative Celiac antibody testing.  Thiamine is needed for antibody production.  Thiamine deficiency can cause false negatives on Celiac antibody tests.  If you are not making a lot of antibodies, you won't have much damage to the small intestine.  

Your ALT is high.  The liver produces ALT.  When the liver does not have sufficient Thiamine, the liver produces more ALT that escapes into the bloodstream.  Elevated ALT is seen in thiamine deficiency.

Your Lipase is high.  Lipase is produced in the liver and pancreas.  More Lipase is released by both in thiamine deficiency.

Your gallbladder has been removed.  Gallbladder dysfunction is common in thiamine deficiency.

Your Zinc is low.  Zinc absorption is enhanced when Thiamine is present.  Zinc is not absorbed well in thiamine deficiency.

Your Folate is low.  Celiac Disease causes malabsorption of all the essential nutrients we need for health, the eight B vitamins, including Thiamine, the four fat soluble vitamin, Vitamin C and minerals like Zinc and Magnesium.  Thiamine stores can be depleted in as little as three weeks or even as quickly as three days.  Thiamine deficiency symptoms can wax and wane depending on how much thiamine is consumed that day.   If a high carbohydrate is eaten regularly, additional Thiamine is needed (500 mg per 1000 calories).

Anxiety and depression are symptoms of thiamine insufficiency.  The brain just thinking  uses as much thiamine as muscles do when running a marathon.  

I have had thiamine deficiency symptoms like you are experiencing.  My doctors did not recognize the symptoms of thiamine deficiency.  They just prescribed pharmaceuticals to cover up the symptoms which only made things worse.  I had a lot of nutritional deficiencies.  I ended up getting a DNA test to check for known genes for Celiac.  I have two Celiac genes.  

Have you had a DNA test for Celiac genes?  

I took Benfotiamine, a form of thiamine that promotes intestinal healing, and a B Complex to correct my deficiencies.  

High doses of thiamine need to be taken to correct deficiency.  Talk to your doctor about administering thiamine intravenously.  Thiamine is safe and nontoxic even in high doses.  Thiamine is easily excreted in urine if not needed.  Improvement of symptoms should be seen within a few hours to a few days.  No harm in trying.  Process of elimination, etc.  

Talk to your doctor and nutritionist.  Testing for nutritional deficiencies should be done before taking vitamin supplements, otherwise the vitamin supplements already taken will be measured.  

I hope this helps you on your journey.

References:

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC6662249/#:~:text=CONCLUSION%3A,in men than in women.

https://pubmed.ncbi.nlm.nih.gov/24923275/

https://pmc.ncbi.nlm.nih.gov/articles/PMC6040496/

https://pmc.ncbi.nlm.nih.gov/articles/PMC3772304/#:~:text=Based on the patient's history,were also no longer present.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].

 

[badastronaut]

Thanks very much for the in depth reply!!! I'll discuss it with my doctor next week!

[badastronaut]

On 1/30/2025 at 10:06 AM, knitty kitty said:

Hello, @badastronaut,

I reread your last post on your previous thread...

"Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks. 

"Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore). 

"What to do??? Could this be gluten related?"

 

Your bilirubin is high.  The liver breaks down bilirubin.  The liver needs Thiamine to break down bilirubin.  Without sufficient Thiamine, bilirubin is not broken down and escapes into the bloodstream.

High levels of bilirubin suppress the immune system.  High levels of bilirubin suppress the production of white blood cells, including anti-gluten antibodies.  The suppression of your immune system by high bilirubin could be the explanation for false negative Celiac antibody testing.  Thiamine is needed for antibody production.  Thiamine deficiency can cause false negatives on Celiac antibody tests.  If you are not making a lot of antibodies, you won't have much damage to the small intestine.  

Your ALT is high.  The liver produces ALT.  When the liver does not have sufficient Thiamine, the liver produces more ALT that escapes into the bloodstream.  Elevated ALT is seen in thiamine deficiency.

Your Lipase is high.  Lipase is produced in the liver and pancreas.  More Lipase is released by both in thiamine deficiency.

Your gallbladder has been removed.  Gallbladder dysfunction is common in thiamine deficiency.

Your Zinc is low.  Zinc absorption is enhanced when Thiamine is present.  Zinc is not absorbed well in thiamine deficiency.

Your Folate is low.  Celiac Disease causes malabsorption of all the essential nutrients we need for health, the eight B vitamins, including Thiamine, the four fat soluble vitamin, Vitamin C and minerals like Zinc and Magnesium.  Thiamine stores can be depleted in as little as three weeks or even as quickly as three days.  Thiamine deficiency symptoms can wax and wane depending on how much thiamine is consumed that day.   If a high carbohydrate is eaten regularly, additional Thiamine is needed (500 mg per 1000 calories).

Anxiety and depression are symptoms of thiamine insufficiency.  The brain just thinking  uses as much thiamine as muscles do when running a marathon.  

I have had thiamine deficiency symptoms like you are experiencing.  My doctors did not recognize the symptoms of thiamine deficiency.  They just prescribed pharmaceuticals to cover up the symptoms which only made things worse.  I had a lot of nutritional deficiencies.  I ended up getting a DNA test to check for known genes for Celiac.  I have two Celiac genes.  

Have you had a DNA test for Celiac genes?  

I took Benfotiamine, a form of thiamine that promotes intestinal healing, and a B Complex to correct my deficiencies.  

High doses of thiamine need to be taken to correct deficiency.  Talk to your doctor about administering thiamine intravenously.  Thiamine is safe and nontoxic even in high doses.  Thiamine is easily excreted in urine if not needed.  Improvement of symptoms should be seen within a few hours to a few days.  No harm in trying.  Process of elimination, etc.  

Talk to your doctor and nutritionist.  Testing for nutritional deficiencies should be done before taking vitamin supplements, otherwise the vitamin supplements already taken will be measured.  

I hope this helps you on your journey.

 

 

So after  a long time in which I got my zinc and folic acid levels back on track I will now start with taking Thiamine to see if that does anything. According to my blood levels I'm not low on Thiamine but, if I understand correctly, blood works are not the best way to find out if there is a Thiamine shortage. How much Thiamine should I take to start with? 100 mg? 

[knitty kitty]

@badastronaut,

I'm so glad you got your folate and zinc up!

I'm a big fan of Benfotiamine.  It's a form of thiamine that promotes intestinal healing.  I take 250 mg Benfotiamine with the first two meals of the day along with a B 50 Complex.  The B vitamins all work together so taking a B Complex with Benfotiamine is great.  I also take a form of thiamine called TTFD (tetrahydrofurfuryl disulfide) which helps immensely with brain function, anxiety and depression.  Start off with small doses (50 mg) and increase doses as long as you see improvement.  

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].

[badastronaut]

On 6/4/2025 at 2:38 AM, knitty kitty said:

@badastronaut,

I'm so glad you got your folate and zinc up!

I'm a big fan of Benfotiamine.  It's a form of thiamine that promotes intestinal healing.  I take 250 mg Benfotiamine with the first two meals of the day along with a B 50 Complex.  The B vitamins all work together so taking a B Complex with Benfotiamine is great.  I also take a form of thiamine called TTFD (tetrahydrofurfuryl disulfide) which helps immensely with brain function, anxiety and depression.  Start off with small doses (50 mg) and increase doses as long as you see improvement.  

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].

Ok so I couldn't find the thiamine you suggested but I was able to buy a bottle of 'standard' thiamine (100 mg). Should I just try half a tablet to see if I notice any difference? If it turns out it does have effect I can always buy the more expensive stuff. Or is that not a smart idea?

[knitty kitty]

Kudos for trying thiamine!

On the ingredients label it should say if it's thiamine hydrochloride (thiamine HCl) or thiamine mononitrate or something else.  

Thiamine mononitrate is shelf stable and not easily utilized in the body.  

Yes, go ahead and try a whole 100 mg tablet.   Take with a meal.  Don't take close to bedtime.  Tomorrow take a 100 mg tablet with two meals. The next day take two 100mg tablets at one meal and 100 mg at second meal.  Keep increasing in this manner as long as you notice improvement.  

When I first started with thiamine hydrochloride, I felt like the lights in my head were being turned on floor by floor like in a tall skyscraper.  It's just the brain working properly with sufficient thiamine.  I worked up to 1000 mg a day.  Lots if tablets.  Benfotiamine and TTFD are stronger and are utilized easier, so not as many milligrams ate needed.  

I'm happy to answer any further questions!  

[badastronaut]

Thanks so much for your replies! no danger of overdosing on the stuff? or having the other B levels going out of whack? I do take a multivitamin with all te other B vitamins at the RDA level. I have bought the HCL version of Thiamine. How long do you need to use the Thiamine? a short periode on high levels and then back to a maintenance dosage?

[knitty kitty]

Absolutely no danger of overdosing on the stuff.  Thiamine is nontoxic, and safe.  I had gotten to 1000 mg of Thiamine HCl a day at one point.  

Do continue taking the multivitamin with the other B vitamins.  You may want to add a magnesium supplement because magnesium and thiamine make enzymes together.  I like Magnesium l-Threonate (Neuro-Mag by life extension).  You may want to add a B Complex in addition to the multivitamin (take them at different times).  All the B vitamins are water soluble.  

With Thiamine HCl, there's a "magic moment" about 500 mg, where sufficient thiamine can get into the cells by passive diffusion, and the difference is amazing.  In thiamine insufficiency, the thiamine transporters (special gates into the cell) shut down.  Thiamine cannot get into the cells until there's a higher concentration outside of the cell.  Once that happens, the  thiamine can get through and go to work inside the cells.  

If you're brave, start with 300 mg at one meal and 200 mg at the next meal.  Increase as you feel comfortable.  You may want to stay at one amount for a few days before increasing again.  Just keep adding another 100 mg as long as you keep feeling improvement.  If you feel uncomfortable, skip the next dose.  Thiamine HCL is water soluble and excess is easily excreted.  Don't take thiamine close to bedtime because you may feel too energized to sleep.  

Thiamine HCl may feel like riding in the back of a pick up truck on a gravel road.  Benfotiamine feels like you're in a chauffeur driven Rolls Royce.  TTFD feels like you're driving a Lamborghini.  You'll get there no matter what kind of thiamine is taking you there.  Just keep taking it.  The health improvements can be very subtle, but you'll notice in the long run.  

I started with 500 mg of Thiamine HCl, to see what would happen and had amazing improvement within an hour.  I took 300 mg with each of two meals and 100 mg with snacks.  I eventually added in Benfotiamine (250 mg  a couple of times a day) and reduced the thiamine HCl.  Later I added in TTFD (50 mg) several times a day.  Just experiment and see what feels right for you. Everyone is different and has a different level of deficiency.   I kept having additional improvement with each type of thiamine.  I've taken thiamine for almost fifteen years now.  I still take all three kinds on maintenance doses.  You have to experiment and see which ones work best for you in which combination.  

I'm right here if you need anything.   You'll be fine.

[badastronaut]

Thanks! I think I'll start slow. See what happens. Should I notice the thiamine working almost straight away if I'm really deficient? What kinda of difference did you notice? More mental? Of also physical in the sense of more energy? 

 

Sorry for all the questions! 

[knitty kitty]

If you're more comfortable starting slow, that's fine, but do increase your dose to 500 mg per day as quickly as possible.  The World Health Organization recommends 500 mg thiamine HCl per day when deficiency is suspected.  Dr. Lonsdale had researched high dose thiamine for decades, and he has used higher doses, 1 to 3 grams in some cases.  

Like I explained above, it's at that 500 mg level or higher that passive diffusion happens and thiamine can get into cells.  Inside the cells, thiamine turns the mitochondria back on.  Mitochondria produce energy the cells use to function.  I had been taking a multivitamin containing thiamine HCl regularly and still had become deficient.  Malabsorption of celiac disease really affects vitamin absorption.  I bought a bottle of thiamine HCl.  I was skeptical, too. I thought it couldn't be that easy.  I took 500 mg all at once.  I had improvement within minutes.  I couldn't believe the sensation of energy spreading to all parts of my body.  My brain felt like it was lifted out of a sub-sub-basement by an elevator and lights were coming on, floor by floor, of a skyscraper.  It was mental improvement, mental clarity.  Thiamine is needed for nerves to transmit electrical impulses, so the more nerves transmitting electrical impulses, the more my brain started working better.  The better my brain started working, the better I felt physically.  My muscles had more energy.  I wanted to get up and do stuff.  

P.S. Questions are welcome.  "there's no poverty like ignorance, no wealth like knowledge". Keep learning!

Edited June 5 by knitty kitty
Added Post Script

[badastronaut]

I took my first 100 mg this morning. Let's see what happens. Still a bit nervous of messing up my other B vitamins since I don't have a B complex at the moment. Thanks for your replies Knitty Kitty!

[knitty kitty]

Good job! Brave astronaut!

The other B vitamins can be stored in the body longer than thiamine.  You won't mess them up.  

[knitty kitty]

How did you feel today?

[badastronaut]

I didn't notice a lot of difference, if any. But after only one pill I don't expect miracles. I'm also recovering from a pretty bad cold so that's a factor that will have some influence too I guess. I'll keep trying the Thiamine in the coming days and will let you know if I feel improvement. Thanks for asking btw!! 

[knitty kitty]

Bump up your thiamine dose!  You can take more if you don't feel anything after the first one.  Must needs getting to that 500mg.

We need more thiamine when we're fighting an infection.  Zinc will help fight infections, too, as well as Vitamin C. They all work together.

Hope you feel better!

[Wheatwacked]

Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral.

Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day. 

Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck.

I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive.

Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct.

Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.

[Beverage]

You said the colonoscopy showed no damage. Did you also have an endoscopy? The upper colon is where celiac damage would be detected via endoscopy, not the colon.

[badastronaut]

hmm, I only had a colonoscopy. Would be interesting to have an endoscopy done then I guess.

[Scott Adams]

Be sure to be eating gluten daily until all of your celiac disease tests are completed (at least 2 slices worth of wheat bread per day for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy).

[badastronaut]

Quick question, had some blood tests done again and once again my zinc was too low but now ofcourse my B1 was too high and so was my B6. The doc said to  immediately  stop all supplements that contain B6. Can using thiamine raise the levels of B6 too?

[knitty kitty]

Are you taking a B 6 supplement or a supplement containing B 6 like a B Complex?  Do you have pins and needles in your toes?  

Don't worry about the thiamine being high.  The blood is a transport system that carries thiamine to the cells so they can store it.  It's fine.  

[badastronaut]

Yes I took a supplement that had B6 in it, low dosage though. I've stopped taking that. B1 doesn't affect other B vitamin levels? 

[knitty kitty]

Thiamine interacts with all the other B vitamins.  Thiamine and B 6 make a very important enzyme together.

With more thiamine and other vitamins available from the supplements your body is absorbing the ones you need more of.  The body can control which vitamins to absorb or not.  You're absorbing more and it's being transported through the blood.  

It's common to have both a Thiamine and a Pyridoxine deficiency.  Keep taking the B Complex.

This is why it's best to stop taking supplements for six to eight weeks before testing vitamin levels.  

Edited July 25 by knitty kitty
Clarification