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Shaking/Tremors and Off Balance


Ginger38

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Ginger38 Rising Star
23 hours ago, Scott Adams said:

It could mean that:

  1. You have celiac disease but caught it early, before villi damage (especially true if you had a positive blood test for celiac disease--but there is the Marsh scale, and even minor damage could be caused by celiac disease);
  2. You have gluten sensitivity--approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
  3. You don't have either of the conditions and can eat gluten normally.

From all of your posts I don't think you fit #3 here, so no matter the outcome a gluten-free diet might be your outcome for optimal health.

Thanks for the info, that helps me understand all this a little better. My GI doctor has already told me that regardless of the biopsy results he believes I have celiac and either way I have to live a dedicated gluten free life as a celiac 


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knitty kitty Grand Master
On 9/18/2024 at 12:45 PM, Ginger38 said:

I have about one more week to go on the gluten challenge; I’ve been noticing some odd things and am wondering if they are gluten related— chest pain, extreme sleepiness and yawning, feeling off balance and feeling like I’m walking sideways or something,  tremors and feeling like my insides are shaking. Ive noticed being forgetful and struggling to find words but I’ve also been stuttering some which is not something I ever do

These are some of the symptoms I have had while deficient in Thiamine (and the other B vitamins).  

Tachycardia (chest pain) can be a symptom of Thiamine deficiency.  Yawning can be called "air-hunger" or "sailors' asthma" and is a symptom of low thiamine because Thiamine is needed to help red blood cells carry oxygen. 

The part of the brain that controls balance is affected by low Thiamine and makes one feel off balance.  I walked sideways.  

Tremors, shaking, and muscle cramps can be caused by low Thiamine.  Fatigue and being sleepy are symptoms of low Thiamine.  Thiamine deficiency affects the nerves, so strange sensations can appear.

Stuttering and alterations in mental ability like word recall and forgetfulness are symptoms of Thiamine deficiency.  Thiamine deficiency can also cause dysphagia, trouble swallowing, and a hoarse voice.  

Reflux can be related to low Thiamine and low Niacin B3 which are needed to produce stomach acid and digestive enzymes.  Reflux is a symptom of low stomach acid.  Proton pump inhibitors make this worse and should not be taken.  Magnesium or calcium will take care of reflux.  

I'm on pins and needles waiting to hear your biopsy results!  So glad you made it through the challenge.  

Please get checked for nutritional deficiencies.  Blood serum levels are not accurate.  Talk to your doctor about supplementing with vitamins and minerals while healing.

Ginger38 Rising Star
10 hours ago, knitty kitty said:

These are some of the symptoms I have had while deficient in Thiamine (and the other B vitamins).  

Tachycardia (chest pain) can be a symptom of Thiamine deficiency.  Yawning can be called "air-hunger" or "sailors' asthma" and is a symptom of low thiamine because Thiamine is needed to help red blood cells carry oxygen. 

The part of the brain that controls balance is affected by low Thiamine and makes one feel off balance.  I walked sideways.  

Tremors, shaking, and muscle cramps can be caused by low Thiamine.  Fatigue and being sleepy are symptoms of low Thiamine.  Thiamine deficiency affects the nerves, so strange sensations can appear.

Stuttering and alterations in mental ability like word recall and forgetfulness are symptoms of Thiamine deficiency.  Thiamine deficiency can also cause dysphagia, trouble swallowing, and a hoarse voice.  

Reflux can be related to low Thiamine and low Niacin B3 which are needed to produce stomach acid and digestive enzymes.  Reflux is a symptom of low stomach acid.  Proton pump inhibitors make this worse and should not be taken.  Magnesium or calcium will take care of reflux.  

I'm on pins and needles waiting to hear your biopsy results!  So glad you made it through the challenge.  

Please get checked for nutritional deficiencies.  Blood serum levels are not accurate.  Talk to your doctor about supplementing with vitamins and minerals while healing.

Thank you so much and thanks for all this good information! I’m glad I survived as well. It was rough! I already feel lighter or something and the bloating is so much better as well as the leg and feet swelling. 

Ginger38 Rising Star
22 hours ago, Scott Adams said:

I could mean that:

  1. You have celiac disease but caught it early, before villi damage (especially true if you had a positive blood test for celiac disease--but there is the Marsh scale, and even minor damage could be caused by celiac disease);
  2. You have gluten sensitivity--approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
  3. You don't have either of the conditions and can eat gluten normally.

From all of your posts I don't think you fit #3 here, so no matter the outcome a gluten-free diet might be your outcome for optimal health.

I had positive TTG - IGA antibodies. Is the marsh scale something that is automatically done when they do the biopsies or how does that work? And how many biopsies should the doc have done  for pretty accurate results? 

RMJ Mentor
25 minutes ago, Ginger38 said:

I had positive TTG - IGA antibodies. Is the marsh scale something that is automatically done when they do the biopsies or how does that work? And how many biopsies should the doc have done  for pretty accurate results? 

For my biopsy the pathologist didn’t indicate a Marsh scale, but my gastroenterologist was able to say what it was based on the biopsy results.  

It is typically recommended to take six biopsies to find celiac disease.  I think that is just to have less chance of missing it.  Damage can be patchy, and only one biopsy has to show celiac damage to say you have it.  I have a bleeding disorder and my gastroenterologist didn’t want to cause troubles with that, so she only took two.  She did use an endoscope with good magnification so she was actually able to see the damage visually first and thus knew where to take the biopsies.

Scott Adams Grand Master
44 minutes ago, Ginger38 said:

I had positive TTG - IGA antibodies. Is the marsh scale something that is automatically done when they do the biopsies or how does that work? And how many biopsies should the doc have done  for pretty accurate results? 

Not all gastro docs do this, but it is considered the standard for diagnosing celiac disease. Here's more info:

 

Wormsy22 Rookie

Hello.

I am new to this but keep coming back to this site looking for information..so I just signed up after seeing the post discussing "shaking inside".  I have been really struggling to figure out what is wrong ... same old story as what everyone on here says...been to every doctor...clean blood labs...etc. I did a TTG test but I didn't know what I was doing (and neither did my doctor apparently) as now I'm realizing it likely isn't valid as it was only about 3 weeks after a full 9 week "no grain" diet...and after going back to gluten it was much lighter than before the no grain diet.

Anyway...I tried to go "no grain" to see if it would help with some general inflammation (knees, hands and like the start of this thread...so off balance "walking sideways" kinda vibes).  I did not notice tremendous improvement so I added wheat/grain back into my diet...and after about 3 weeks I started getting bad headaches, my hands/feet/face started tingling...and a very very unsettling "vibration" feeling inside my head started.  It is now going through my whole body.  It is a very odd sensation ... and pretty scary actually.  But I've now had tons of blood tests (all clean)...an MRI on my brain (clean)...and a EMG Nerve Conduction test (clean).  So...apparently I'm in great shape but I have terrible headaches, tingling/numb hands/feet/face...and "internal vibrations" that make me think I'm shaking so hard in the bed I"m going to wake my wife.  

Here is the kicker..I have zero gastrointestinal issues.  None.  I've never had any.  Maybe some light acid reflux from time to time but overall, I've had a steel tank stomach.  

I'm out of doctors to try.  Running out of tests (and money).  I've been back to gluten free for about 3 weeks with no improvement.  And worry if I go too long then I can't blood test properly.... I'm out of gas with this.  And really have a hard time believing all these random symptoms could be gluten?   

Anybody in this same crazy position?  Any information or thoughts are much appreciated.


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trents Grand Master

How long has this been goin on? May we ask your age?

What you describe sounds like it could be gluten-induced neurological damage of some kind which may not be detectable by testing designed to diagnose other kinds of neurological disorders. And it may not be completely reversible. What is noteworthy is that your symptom list became longer when you went back on gluten/grains.

There are many "silent" celiacs. They are those who have no GI distress or so little of it that it does not get their attention as being a symptom of some underlying condition like celiac disease. Nonetheless, there is damage being done to the villous lining of their small bowel, the place where all of our nutrition is absorbed, and eventually they develop nutritional deficiency related medical issues because the ability to absorb the nutrition from the food they consume has become severely compromised. One of those potential medical issues is neurological disease. Have you had an endoscopy done with biopsy of t he small bowel lining?

Acid reflux is very common in the celiac population. 

Can you be more specific about the "ttg" blood test you had done to check for celiac disease? Was that the ttg-iga? There is more than one type of ttg celiac disease antibody blood test that can be run. Was that the only celiac blood antibody test ordered? More should have been ordered by the physician if so, especially if you had been skimping on gluten intake.

knitty kitty Grand Master

Welcome to the forum, @Wormsy22!

Yes, unfortunately many doctors are not clear on proper testing protocol for Celiac Disease, much less the treatment.

If we remove gluten from our diet, the antibodies our bodies produce against gluten go down.  

I went gluten free on my own.  My doctors had laughed at me when I suggested testing for Celiac Disease.  Later, to get a proper diagnosis, I couldn't finish the gluten challenge because my body reacted so extremely.  Symptoms get way worse with reintroduction. 

A gluten challenge requires 10 grams (4-6 slices of bread, pizza, etc.) to provoke sufficient antibody production so that the antibodies get into the bloodstream.  Less than 10 grams will make one sick (the antibodies stay in the gut wreaking havoc), but won't elicit sufficient antigluten antibodies in the bloodstream. 

I ended up getting diagnosed by DNA testing and improvement on a gluten free diet.  Celiac Disease is genetic.  Having Celiac genes doesn't mean you have active Celiac Disease, just the potential to develop it.  Your genes don't change, so no gluten challenge required.  Improvement on a gluten free diet points to active Celiac genes.

If you remove gluten from your diet, you also remove a big source of B vitamins since wheat/gluten containing products are required to be enriched with vitamins lost in processing.  Malabsorption of essential nutrients due to damaged intestines caused by Celiac Disease and reduced sources of vitamins and minerals results in malnutrition, aka vitamin deficiencies.  There's eight B vitamins, each of which are needed for proper nerve and muscle function.  Being low in these vitamins can cause the symptoms you and I have experienced.  

Most B vitamins can be stored for a month, but Thiamine B1 can become depleted in as little as three days to three weeks.  Thiamine is needed to produce energy for the cells to function.  So nerve cells misfire, muscle cells misfire, and the brain, where all these messages get sent, is affected.  MRIs showing brain damage caused by Thiamine deficiency is most frequently found postmortem, though changes may be seen before then, and damage is reversible is possible, IF recognized and treated properly and promptly.  My doctors didn't recognize my symptoms of nutritional deficiencies, but having studied microbiology and nutrition at university, I did, as far fetched as it sounded.  I took over-the-counter vitamins and had symptom improvement within an hour.  

Look at this study where people (not diagnosed with Celiac Disease nor malabsorption problems) became deficient in Thiamine quickly.  They had no long-term problems because they did Not continue the Gluten free diet like we have to do.

Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks, with no long term nutritional deficiencies

https://pubmed.ncbi.nlm.nih.gov/34583628/

More Interesting Reading:

Nutritional Deficiencies in Celiac Disease: Current Perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703793/

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

Thiamine deficiency disorders: a clinical perspective

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

Insufficiency of B vitamins with its possible clinical implications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7417807/

B Vitamins: Functions and Uses in Medicine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Wormsy22 Rookie

This tingling sensations have been going on about 5 weeks.  I am 52 years old.  So, I am trying to figure out if this is what is going on.  It sounds like the only things I can do to try to "confirm" it are...

  1. Get a DNA test to see if I have the genetic pre-disposition
  2. Get a Biopsy of small bowel.  

Is that correct in your experience?

Regarding blood test, I had a typical gluten cascade panel.  With scores as follows:

  • tTG igA - 3 (Range shows 0-3 as negative...4-10 weak positive...>10 positive)
  • Deadmidated Gliaden Abs, IgG - 2 (Range is 0-19 as negative and >30 positive)
  • Antigliaden IgG - 17 (Range is 0-19 as negative and >30 positive)
  • IgE Wheat - <0.10 (Range is <0.10 Negative....0.10-0.31 Low...etc.)
  • B12 adn Folate were both high end of normal range - I don't seem to be lacking nutrients

 

TV

6 hours ago, knitty kitty said:

Welcome to the forum, @Wormsy22!

Yes, unfortunately many doctors are not clear on proper testing protocol for Celiac Disease, much less the treatment.

If we remove gluten from our diet, the antibodies our bodies produce against gluten go down.  

I went gluten free on my own.  My doctors had laughed at me when I suggested testing for Celiac Disease.  Later, to get a proper diagnosis, I couldn't finish the gluten challenge because my body reacted so extremely.  Symptoms get way worse with reintroduction. 

A gluten challenge requires 10 grams (4-6 slices of bread, pizza, etc.) to provoke sufficient antibody production so that the antibodies get into the bloodstream.  Less than 10 grams will make one sick (the antibodies stay in the gut wreaking havoc), but won't elicit sufficient antigluten antibodies in the bloodstream. 

I ended up getting diagnosed by DNA testing and improvement on a gluten free diet.  Celiac Disease is genetic.  Having Celiac genes doesn't mean you have active Celiac Disease, just the potential to develop it.  Your genes don't change, so no gluten challenge required.  Improvement on a gluten free diet points to active Celiac genes.

If you remove gluten from your diet, you also remove a big source of B vitamins since wheat/gluten containing products are required to be enriched with vitamins lost in processing.  Malabsorption of essential nutrients due to damaged intestines caused by Celiac Disease and reduced sources of vitamins and minerals results in malnutrition, aka vitamin deficiencies.  There's eight B vitamins, each of which are needed for proper nerve and muscle function.  Being low in these vitamins can cause the symptoms you and I have experienced.  

Most B vitamins can be stored for a month, but Thiamine B1 can become depleted in as little as three days to three weeks.  Thiamine is needed to produce energy for the cells to function.  So nerve cells misfire, muscle cells misfire, and the brain, where all these messages get sent, is affected.  MRIs showing brain damage caused by Thiamine deficiency is most frequently found postmortem, though changes may be seen before then, and damage is reversible is possible, IF recognized and treated properly and promptly.  My doctors didn't recognize my symptoms of nutritional deficiencies, but having studied microbiology and nutrition at university, I did, as far fetched as it sounded.  I took over-the-counter vitamins and had symptom improvement within an hour.  

Look at this study where people (not diagnosed with Celiac Disease nor malabsorption problems) became deficient in Thiamine quickly.  They had no long-term problems because they did Not continue the Gluten free diet like we have to do.

Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks, with no long term nutritional deficiencies

https://pubmed.ncbi.nlm.nih.gov/34583628/

More Interesting Reading:

Nutritional Deficiencies in Celiac Disease: Current Perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703793/

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

Thiamine deficiency disorders: a clinical perspective

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

Insufficiency of B vitamins with its possible clinical implications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7417807/

B Vitamins: Functions and Uses in Medicine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

Thank you  for all this information...I will certainly look further into these links and information on Thiamine

trents Grand Master

One important blood test that was not run in connection with your testing for celiac antibodies is what we commonly call "total IGA". If one is IGA deficient, individual IGA antibody test scores, such as the ttg-IGA can be falsely negative: See the section entitled, "IgA Levels/Deficiency Blood Test" from this article: 

 

Scott Adams Grand Master
4 hours ago, Wormsy22 said:

This tingling sensations have been going on about 5 weeks.  I am 52 years old.  So, I am trying to figure out if this is what is going on.  It sounds like the only things I can do to try to "confirm" it are...

  1. Get a DNA test to see if I have the genetic pre-disposition
  2. Get a Biopsy of small bowel.  

Is that correct in your experience?

Regarding blood test, I had a typical gluten cascade panel.  With scores as follows:

  • tTG igA - 3 (Range shows 0-3 as negative...4-10 weak positive...>10 positive)
  • Deadmidated Gliaden Abs, IgG - 2 (Range is 0-19 as negative and >30 positive)
  • Antigliaden IgG - 17 (Range is 0-19 as negative and >30 positive)
  • IgE Wheat - <0.10 (Range is <0.10 Negative....0.10-0.31 Low...etc.)
  • B12 adn Folate were both high end of normal range - I don't seem to be lacking nutrients

 

TV

 

Thank you  for all this information...I will certainly look further into these links and information on Thiamine

Keep in mind that you'll need to eat lots of gluten daily before any further tests can be done, and for a biopsy you need to do this for at least 2 weeks beforehand.

Given that you stopped eating all grains for at least 3 weeks before your blood screening it's certainly possible that your tTG-IgA level might have reached the "weak positive" area or higher, but @trents is correct--if your total IgA is naturally low then this will also cause lower values for your tTG-IgA results. 

Wormsy22 Rookie
5 hours ago, Wormsy22 said:

This tingling sensations have been going on about 5 weeks.  I am 52 years old.  So, I am trying to figure out if this is what is going on.  It sounds like the only things I can do to try to "confirm" it are...

  1. Get a DNA test to see if I have the genetic pre-disposition
  2. Get a Biopsy of small bowel.  

Is that correct in your experience?

Regarding blood test, I had a typical gluten cascade panel.  With scores as follows:

  • tTG igA - 3 (Range shows 0-3 as negative...4-10 weak positive...>10 positive)
  • Deadmidated Gliaden Abs, IgG - 2 (Range is 0-19 as negative and >30 positive)
  • Antigliaden IgG - 17 (Range is 0-19 as negative and >30 positive)
  • IgE Wheat - <0.10 (Range is <0.10 Negative....0.10-0.31 Low...etc.)
  • B12 adn Folate were both high end of normal range - I don't seem to be lacking nutrients

 

TV

 

Thank you  for all this information...I will certainly look further into these links and information on Thiamine

 

Thank you for these insights.

Might you be willing to share the supplment levels that helped you?  I want to try B1/Thiamine but I'm new to supplements and see significant differences in the actual dosages available.  I know you are not a physician but might you be willing to share the type of dosage that helped you?

 

 

Wormsy22 Rookie
1 minute ago, Wormsy22 said:

 

Thank you for these insights.

Might you be willing to share the supplment levels that helped you?  I want to try B1/Thiamine but I'm new to supplements and see significant differences in the actual dosages available.  I know you are not a physician but might you be willing to share the type of dosage that helped you?  @knitty kitty

 

 

 

45 minutes ago, Scott Adams said:

Keep in mind that you'll need to eat lots of gluten daily before any further tests can be done, and for a biopsy you need to do this for at least 2 weeks beforehand.

Given that you stopped eating all grains for at least 3 weeks before your blood screening it's certainly possible that your tTG-IgA level might have reached the "weak positive" area or higher, but @trents is correct--if your total IgA is naturally low then this will also cause lower values for your tTG-IgA results. 

 

Helpful info...thank you.

knitty kitty Grand Master

@Wormsy22,

B12 and Folate can be high if there's a deficiency in Pyridoxine B6 and Thiamine B1.  

Do consider a gluten challenge with 10 grams (4-6 slices of bread or equivalents) for several weeks before having complete blood tests for antigluten antibodies as @trents and @Scott Adams mentioned.  

Do ask for DNA screening to check for Celiac genes.

Talk to your doctor and nutritionist before starting supplementation.  Further testing for nutritional deficiencies can be masked if taking vitamin supplements.  Some medications can interfere with the absorption and utilization of B vitamins.  Be sure to take all eight B vitamins (a methylated B Complex once or twice a day is a good idea).  Higher doses than the recommended daily amount are needed to build up the depleted store of vitamins within cells.

I took Benfotiamine, a form of Thiamine shown to promote intestinal healing.  Start with 100 mg with each meal.  Avoid vitamins with Thiamine Mononitrate as this form is not easily utilized by the body.  

I also take a form of Thiamine called Allithiamine (Tetrahydrofurfuryl Disulfide - TTFD) which helps with brain and nerve functions.  Start with 50 mg once a day.  You can increase your doses as you continue to see improvements.  Thiamine is water soluble and nontoxic even in high doses.  All the B vitamins are water soluble and easily excreted in urine.  

The World Health Organization says the best way to check for Thiamine deficiency is to take it and look for health improvements.  Some people need to take larger doses to see improvements.  300 mg of Benfotiamine, 100 mg of Allithiamine TTFD, or 500 mg of Thiamine Hydrochloride.  

Wormsy22 Rookie
19 minutes ago, knitty kitty said:

@Wormsy22,

B12 and Folate can be high if there's a deficiency in Pyridoxine B6 and Thiamine B1.  

Do consider a gluten challenge with 10 grams (4-6 slices of bread or equivalents) for several weeks before having complete blood tests for antigluten antibodies as @trents and @Scott Adams mentioned.  

Do ask for DNA screening to check for Celiac genes.

Talk to your doctor and nutritionist before starting supplementation.  Further testing for nutritional deficiencies can be masked if taking vitamin supplements.  Some medications can interfere with the absorption and utilization of B vitamins.  Be sure to take all eight B vitamins (a methylated B Complex once or twice a day is a good idea).  Higher doses than the recommended daily amount are needed to build up the depleted store of vitamins within cells.

I took Benfotiamine, a form of Thiamine shown to promote intestinal healing.  Start with 100 mg with each meal.  Avoid vitamins with Thiamine Mononitrate as this form is not easily utilized by the body.  

I also take a form of Thiamine called Allithiamine (Tetrahydrofurfuryl Disulfide - TTFD) which helps with brain and nerve functions.  Start with 50 mg once a day.  You can increase your doses as you continue to see improvements.  Thiamine is water soluble and nontoxic even in high doses.  All the B vitamins are water soluble and easily excreted in urine.  

The World Health Organization says the best way to check for Thiamine deficiency is to take it and look for health improvements.  Some people need to take larger doses to see improvements.  300 mg of Benfotiamine, 100 mg of Allithiamine TTFD, or 500 mg of Thiamine Hydrochloride.  

 

Thank you VERY much.

Scott Adams Grand Master
1 hour ago, Wormsy22 said:

 

Thank you for these insights.

Might you be willing to share the supplment levels that helped you?  I want to try B1/Thiamine but I'm new to supplements and see significant differences in the actual dosages available.  I know you are not a physician but might you be willing to share the type of dosage that helped you?

 

 

I think you may be confusing me here with @knitty kitty, however, I also take B1, and in my signature block is a link to my supplementation.

Wormsy22 Rookie
26 minutes ago, Scott Adams said:

I think you may be confusing me here with @knitty kitty, however, I also take B1, and in my signature block is a link to my supplementation.

 

Sorry....I realized I did it wrong after hitting submit...and I ressubmitted to Knitty.  Getting used to this interface....but thanks for the followup.  You've built a nice community here.  I've gotten more useful information in 24 hrs for free than I have in the past 12 mos for thousands of dollars.

Now I'm hopeful some of it helps me :)

 

TV

Wheatwacked Veteran
On 10/1/2024 at 8:22 PM, Wormsy22 said:

I added wheat/grain back into my diet...and after about 3 weeks I started getting bad headaches, my hands/feet/face started tingling...and a very very unsettling "vibration" feeling inside my head started.  It is now going through my whole body.  It is a very odd sensation ... and pretty scary actually. 

Whatever the doctors decide, you can not eat wheat.  Chasing an official diagnosis is up to you.  In addition to the damage the wheat does, it also causes malabsorption syndrome, so even if you eat the same as the next guy your small intestine does not absorb it so you are also dealing with malnutrition.  The solution is avoid wheat, rye and replete your vitamin and mineral deficiencies.  While healing which can take six months to several years it is best to choose high omega 3.  The standard american diet some experts say reaches 20 to 1 (omega 6: omega 3.  Optimum is 1:1 but 3:1 is good.

The blood tests only show if your organs are doing their jobs keeping critical blood levels in range so they are not a good indicator for deficient intake.

If I don't take Thiamine 250 mg three times a day I get a cramp in either foot after sleeping about 2 hours.  Big toe points up, ankle twists under.  I've replicated this many times.

The ones that have had the most obvious improvement for me are vitamin D, Thiamine, Choline and Iodine.  42% US adults have vitamin D deficiency, 90% don't reach adequate intake of choline (eggs, meat).  "Drs. Brownstien, Ng, and Nasbaum have now tested iodine levels on well over 4,000 patients. Our results have been consistent; approximately 967 of patients test low for iodine. The balance of patients initially tests near zero for iodine levels." Iodine Insufficiency in America

The daily recommended dietary allowance (RDA) established by the Institute of Medicine (IOM) 150 μg for males and most females.  National Health and Nutrition Examination Survey (NHANES) data from 2011–2014 indicate the median UIC of the U.S. population age 6 years and older is 133 µg/L.  Median concentration decreased more than 50% between 1971-1974 (32.0+/-0.6 microg/dL) and 1988-1994.

These are deficiencies in the popular diet.  Gluten Free processed foods are not required to fortify.  Many with Celiac Disease who don't take supplements continue to have malnutrition, even after years of gluten free diet.   

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.

Iodine – 500 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

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    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
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