Persistent nausea 6 weeks gluten free

[Maggieinsc]

2 hours ago, Always-Hungry-Kate said:

Yes, the H. Pylori test was a part of the endoscopy I had (with biopsies taken) at the end of November.  When I got the results, the only things that were found other than the celiac was a slight hiatal hernia and inactive, chronic gastritis.

Immediately after the endoscopy, the gastroenterologist who performed it, met with me while I was in recovery.  He said that, except for those things, he had no idea why I had the (previous) horrific “hunger pangs” or the nausea that I still have now. 
 

Reasons why this is so frustrating; I just want to know what’s happening!  None of these doctors can tell me?!?  That’s why I keep asking that question in this forum.  Maybe there’s another person who was given a better explanation.  I know no one can tell me how long it will be before the nausea stops, but at least tell me why I have it now — almost all day, every single day. 
 

At least the crazy anxiety and horrific hunger pangs seem to be in the past, now (I hope).  If anyone has any insight about the nausea, I hope they add their comments here. 

My first doctor visit after my endoscope my gastroenterologist warned me would feel terribly hungry for a while. To beware because it’s a good way to gain weight. Alot of celiac’s experience it too and gain weight becaise of it. So far the weight gain  hasn’t happened. Thank goodness. Right now my personal theory is that your stomach is waking up as it heals and screaming for the nutrition it has been missing. I know when I do get glutened that hunger quickly goes away. Annoyingly when I start feeling better it’s back so taking it as a sign I am on the right road to recovery. 

[Always-Hungry-Kate]

17 minutes ago, Maggieinsc said:

My first doctor visit after my endoscope my gastroenterologist warned me would feel terribly hungry for a while. To beware because it’s a good way to gain weight. Alot of celiac’s experience it too and gain weight becaise of it. So far the weight gain  hasn’t happened. Thank goodness. Right now my personal theory is that your stomach is waking up as it heals and screaming for the nutrition it has been missing. I know when I do get glutened that hunger quickly goes away. Annoyingly when I start feeling better it’s back so taking it as a sign I am on the right road to recovery. 

Yes, O.K.  Glad to hear that same answer — and coming from a gastroenterologist, too.  The thing is, I’ve been eating quite well my entire life and my blood work and scans never came up showing my being iron deficient, or with bad, thyroid numbers, or metabolic issues . . . but then again, no one was really looking for that stuff until October of this year. 

And, my doctors are also telling me that it is due to the new diet and the fact that I am on a (what-I-have-been-calling “scary”) new anabolic osteoporosis drug could be doing all of that to me at the same time.  
At least . . . I know I keep saying this . . . the horrific anxiety and hunger have lessened greatly.  Could that be due to the 50,000 IU vitamin D?  I’m taking now?  They can’t tell me that, either.  Other than that, I am trying to make myself believe that I AM healing and that things will be back in some form of balance “soon”.  

[Maggieinsc]

3 hours ago, Always-Hungry-Kate said:

Was thinking about trying that, but — as of this minute — plain yogurt and (especially) probiotic (dairy) drinks give me relief (at least for a little while during the day).  Also, because the celiac caused my recently-diagnosed osteoporosis, consuming a number of different dairy products is the quickest/easiest way for me to get the calcium and D that my bones really need right now.  

Alot of veggies have vitamin d 3 too. U can probably google a list. 

[Maggieinsc]

20 hours ago, Always-Hungry-Kate said:

Yes, O.K.  Glad to hear that same answer — and coming from a gastroenterologist, too.  The thing is, I’ve been eating quite well my entire life and my blood work and scans never came up showing my being iron deficient, or with bad, thyroid numbers, or metabolic issues . . . but then again, no one was really looking for that stuff until October of this year. 

And, my doctors are also telling me that it is due to the new diet and the fact that I am on a (what-I-have-been-calling “scary”) new anabolic osteoporosis drug could be doing all of that to me at the same time.  
At least . . . I know I keep saying this . . . the horrific anxiety and hunger have lessened greatly.  Could that be due to the 50,000 IU vitamin D?  I’m taking now?  They can’t tell me that, either.  Other than that, I am trying to make myself believe that I AM healing and that things will be back in some form of balance “soon”.  

If anyone Dr Greger might have vitamin d research on his website. Free to everyone he has an extensive searchable database on many nutrition subjects. https://nutritionfacts.org 

He reviews all the nutritional medical research so you don't have too. Only accepts the gold standard research of double blind studies.

Many are not double blind but paid for by the medicine’s developers or by the company who makes it like cereal manufacturers or the dairy industry. Its also a good place to research other options for increasing Vit D.   

He never receives money for anything. Profits from his books go to his local humane society. What a guy! 

You could also try the medline database. https://www.nlm.nih.gov/medline/medline_overview.html

[Raquel2021]

On 12/18/2023 at 2:23 AM, Yvonne Pettersen said:

My doctor kept telling me there was nothing wrong with  me  I kept losing weight over a year   Dropped from 85 down to 55 kilos   couldn't eat much at all  at the end     Finally I collapsed  at home  Was told  my body was starving    Spent  a month in hospital     New diet  worked wonders   Has since  but quickly changed doctor after I got home    still  have problems  with food that I'm supposed to be able to eat    Bloat really badly   and painful gut    To scared to eat incase I get an attack      How do I over come the fear of eating  

Hi Yvonne

I have lost a lot of weight as well and unable to put it back on . What diet are you on?

[knitty kitty]

On 9/20/2023 at 9:14 PM, Newtoceliac4990 said:

Nausea has been a main symptom for me since being diagnosed with celiac about 6 weeks ago. It comes and goes and still does. I believe I have been good with cross contamination. Is this normal part of recovery? My stomach feels a mix between being nauseous and hungry. I also have constant hiccups and severe abdominal pain in the mornings. Any Insight on timelines for feeling better. I did an antibody test and my results were in the 2000s and my doctor said they should be less than 5.

Hello,

Celiac Disease damages the villi in the small intestine so that nutrients (vitamins and minerals) are not absorbed in sufficient amounts. 

Thiamine is the vitamin that we run out of first because our bodies use so much of it, especially if we are physically and emotionally stressed.  Thiamine can only be stored for a few weeks at most, but deficiency symptoms can occur in as little as three days.  These symptoms may mysteriously wax and wane depending on how much Thiamine is absorbed from the daily diet.  A diet high in carbohydrates depletes thiamine further because more thiamine is needed to digest carbohydrates and turn them into energy.  

Early Thiamine deficiency symptoms include anxiety, nausea, changes in appetite (ravenous appetite or no appetite at all), abdominal pain, and even recurring hiccups. 

Replenishing thiamine by taking 500 - 2000 mg a day can relieve symptoms within hours.  Thiamine is harmless, and nontoxic.  It is water soluble so any excess is easily excreted through the kidneys.  No harm, no foul in trying thiamine.   

Taking high dose Thiamine, magnesium and a B Complex  helped me recover from my nutritional deficiencies.  Thiamine needs magnesium and the other B vitamins to work correctly.  My severe thiamine deficiency symptoms started resolving within an hour of taking high dose Thiamine.  Visit my blog for more of my experiences with Thiamine deficiency.  

Hope this helps!

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

https://pubmed.ncbi.nlm.nih.gov/30092713/

https://pubmed.ncbi.nlm.nih.gov/12011896/

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

https://pubmed.ncbi.nlm.nih.gov/29982183/

https://pubmed.ncbi.nlm.nih.gov/35810577/

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

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

[knitty kitty]

On 12/15/2023 at 3:27 PM, Maggieinsc said:

 

I would add Gingerale. Always calms my stomach down when i get nauseated. Thank goodness its not as bad now two months into gluten free for celiac. However still frequently exhausted so I got some B 12 at Sprouts. My mom swore by it for energy. If that doesn't work will head back to the doctor after Christmas. Tired of being tired. 

I did read a book by Jennifer Esposito(Jennifer’s Way) whose had undiagnosed severe celiac since childhood. Said it took her about two years to feel “normal”again. She also took alot of supplements in gel form because our digestive system is so damaged tablets don't work as well. Essentially we were starving and getting no nutrition from our food no matter what we ate. 

the doctor had already told me to take massive D3 and iron for anemia. I also take Trace  Minerals for magnesium sodium and potassium as well as other minerals. Seems to help with muscle cramps I get alot. 

Hello, Maggie!

I enjoyed Jennifer's book, too.  That we're basically starving to death because we cannot absorb sufficient vitamins and minerals is absolutely right.  

B12 does make us feel more energetic, but B12 needs the other B vitamins to work properly.  B12 works closely with Folate B 9.  Taking B12 by itself can cause a deficiency in Folate. Folate needs Pyridoxine B 6 and Thiamine B 1.

Iron deficiency anemia will resolve faster if Riboflavin Vitamin B 2 is taken.  Thiamine and Riboflavin, and B12 and Folate make enzymes together that support red blood cell production.  Pyridoxine B 6 is needed here as well.  

Thiamine and Niacin B 3 are needed to make and secrete digestive enzymes in the stomach, gallbladder and pancreas.  Hypochlorhydria (low stomach acid) is frequently misdiagnosed as acid reflux in Celiac people.  Proton pump inhibitors will make things worse because they lower stomach acid levels further.  PPI's will cause further damage to the intestinal villi, too.  

Hypochlorhydria and Gastroparesis can cause nausea.  I've had both.  My gastroparesis and bouts of nausea were both relieved by taking Thiamine.  Muscle contractions in our intestines push food through our digestive system.  When there's insufficient Thiamine, the muscles don't contract leading to Gastroparesis, SIBO, bloating, and abdominal pain.  

Thiamine and magnesium make life sustaining enzymes, so taking magnesium supplements helps, but supplementing with Thiamine at the same time will relieve fatigue and muscle cramps, and provide  more energy than supplementing just B12 alone.

The eight B vitamins are all intricately interconnected, so it's best to supplement with a B Complex and extra Thiamine.  

The B vitamins are water soluble.  They can be lost quickly if we have diarrhea, vomiting, or constipation.  Damage to the small intestine from CeD affects the amount of B vitamins that can be absorbed.  Newly diagnosed Celiacs are frequently low in B vitamins. 

Blood tests are not reliable indicators of deficiencies in the B vitamins.  Our brain will order cells and tissues to release their stores of B vitamins in order to keep important organs like the brain and heart functioning.  The bloodstream is used as the transport system.  This is why blood levels can seem within "normal" limits, but the cells inside tissues and organs are deficient.  

Doctors are required to take only twenty-four hours of nutrition courses during their seven to ten years of medical training.  Doctors are trained to prescribe pharmaceuticals.  They do not recognize the symptoms of nutritional deficiencies.  

The best way to test for B vitamin deficiencies is to take them and look for improvement.  If not needed, they're excreted.  If needed, you will see improvements.  

Hope this helps!

[knitty kitty]

Yes, you are right about cutting out dairy!  

Some Celiacs have lactose intolerance.  They cannot produce the enzyme lactase which digests lactose (milk sugar).  The enzyme lactase is produced in the tips of the villi in the small intestine.  These villi get damaged in Celiac Disease by the antibodies against gluten.  Adopting a gluten free and dairy free diet allows the antibodies to reduce in number and allows the villi to regrow and produce the enzyme lactase again.  

However, some people with Celiac Disease develop a reaction to the milk protein Casein as though it were gluten.  

In this study, it was found that half of the people with Celiac Disease reacts to the protein casein in dairy the same as they react to gluten.

 

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

 

It has to do with molecular mimicry.  A segment of a casein molecule resembles a segment of a gluten molecule.  So our bodies can react to dairy while on a gluten free diet exactly the same as to gluten with all the inflammation and symptoms.  

So, yes, gluten free and dairy free is the way to go when just starting on your Celiac journey.

[knitty kitty]

On 12/18/2023 at 1:23 AM, Yvonne Pettersen said:

My doctor kept telling me there was nothing wrong with  me  I kept losing weight over a year   Dropped from 85 down to 55 kilos   couldn't eat much at all  at the end     Finally I collapsed  at home  Was told  my body was starving    Spent  a month in hospital     New diet  worked wonders   Has since  but quickly changed doctor after I got home    still  have problems  with food that I'm supposed to be able to eat    Bloat really badly   and painful gut    To scared to eat incase I get an attack      How do I over come the fear of eating  

Welcome, Yvonne!

Losing lots of weight unintentionally is symptomatic of nutritional deficiencies.  Were these corrected?  Are you currently taking a B Complex?  Vitamin D?

Weight loss can be due to Thiamine deficiency.  I lost a lot of weight quickly.  I also had bloating and abdominal pain.  I was scared to eat as well. 

I followed the Autoimmune Protocol Diet, a Paleo diet, which removes foods that are irritating to the damaged digestive tract.  It's basically meat and veggies, and some fruit. 

The AIP diet cuts out all processed foods and processed meats.  These are high histamine foods.  Lowering histamine helps reduce inflammation, so choose low histamine foods, too.

The AIP diet cuts out grains, rice, legumes and pulses which contain irritating plant Lectins.  Nightshades are excluded because they contain glycoalkaloids which promote leaky gut syndrome.   

After three weeks on the diet, additional foods can be added back in one at a time, checking for any reactions.  A food journal is helpful here.

Bloating and abdominal pain can be caused by a deficiency in Thiamine  Vitamin B1.  Thiamine is needed to digest carbohydrates.  Without sufficient thiamine, undigested carbohydrates pass into the intestines where intestinal bacteria digest the carbohydrates, releasing gas and causing bloating.  Removing carbohydrates from the diet causes the carbohydrate-loving, bloating bacteria to die off, changing your intestinal microbiome, allowing for beneficial bacteria to repopulate the intestines.  

Thiamine helps keep colonic bacteria from overgrowing into the small intestine in SIBO.  

Thiamine also improves depression and anxiety.

Supplementing with a B Complex and additional thiamine is beneficial while our intestines are healing.  

Hope this helps!

[Raquel2021]

1 hour ago, knitty kitty said:

Welcome, Yvonne!

Losing lots of weight unintentionally is symptomatic of nutritional deficiencies.  Were these corrected?  Are you currently taking a B Complex?  Vitamin D?

Weight loss can be due to Thiamine deficiency.  I lost a lot of weight quickly.  I also had bloating and abdominal pain.  I was scared to eat as well. 

I followed the Autoimmune Protocol Diet, a Paleo diet, which removes foods that are irritating to the damaged digestive tract.  It's basically meat and veggies, and some fruit. 

The AIP diet cuts out all processed foods and processed meats.  These are high histamine foods.  Lowering histamine helps reduce inflammation, so choose low histamine foods, too.

The AIP diet cuts out grains, rice, legumes and pulses which contain irritating plant Lectins.  Nightshades are excluded because they contain glycoalkaloids which promote leaky gut syndrome.   

After three weeks on the diet, additional foods can be added back in one at a time, checking for any reactions.  A food journal is helpful here.

Bloating and abdominal pain can be caused by a deficiency in Thiamine  Vitamin B1.  Thiamine is needed to digest carbohydrates.  Without sufficient thiamine, undigested carbohydrates pass into the intestines where intestinal bacteria digest the carbohydrates, releasing gas and causing bloating.  Removing carbohydrates from the diet causes the carbohydrate-loving, bloating bacteria to die off, changing your intestinal microbiome, allowing for beneficial bacteria to repopulate the intestines.  

Thiamine helps keep colonic bacteria from overgrowing into the small intestine in SIBO.  

Thiamine also improves depression and anxiety.

Supplementing with a B Complex and additional thiamine is beneficial while our intestines are healing.  

Hope this helps!

Hi knitty kitty,

Are you in a normal healthy weight now? I have tried talking B complex of all kinds and cannot tolerate them . I also tried taking a sublingual vitamin D last week and gave me crazy insomnia.  I want to try taking thiamine but I am honestly scared.  Every night I lose sleep is a nightmare for me. I felt great taking the vitamin D is was only 1000 ius so low dose. My body is so broken.  I don't understand.  I am going back to my Dr next week. I feel hopeless. I only have good sleeps when following a strict paleo diet. A ton of vegetables but then lose a ton of weight quickly. I also don't have a gallbladder so digesting fats is a nightmare.  I don't tolerate sugar at all. Even dates would also give me crazy insomnia.  I can only tolerate iron supplements and a low dose of B12. My ferritin is always 5 or 7 normal range is 30 to 285 which it makes think I am still not absorbing properly.  

[knitty kitty]

@Raquel2021,

Yes, I'm a normal healthy weight now 😸 and I don't have a gallbladder either.  

Tell me what happens when you take vitamins.  You say you can't tolerate them.  Do you throw up?  Pass out?  Have anaphylaxis?  Turn purple?  Climb the walls? 

Do you keep a food/mood/poo'd journal?  

What ingredients are in your usual Vitamin D and sublingual Vitamin D?  What is the source of your Vitamin D?  I know of someone who reacted to Vitamin D because it was derived from lanolin and they were allergic to wool.  Switching to another source of Vitamin D solved that problem.

Keep in mind that when you switch to a gluten free diet, you are no longer getting the vitamins that manufacturers put in gluten containing products to replace vitamins lost in manufacturing as required by law.  Gluten free facsimile foods are not required to be enriched with vitamins.  Gluten free facsimile foods are mostly empty calories and saturated fats.  

A Paleo Diet can be deficient in B vitamins because good sources (like grains) are not consumed.  It's important to choose nutritionally dense foods (like liver).  

Taking vitamins and minerals while you are healing is beneficial.  Supplying additional vitamins and minerals allows our bodies to absorb more of these nutrients easily.  These vitamins are necessary for our bodies to heal and function properly.  

Thiamine helps digest carbohydrates, fats and proteins and turn them into fuel.  When thiamine is in short supply, our body switches from burning carbohydrates (uses up lots of thiamine) to burning fats (uses way less thiamine).  Unfortunately, if we have trouble absorbing fats, our body uses our own fat and even protein from our own muscles to burn for fuel.  This can cause weight loss and loss of muscle.  

Having a sensitivity to sugar and simple carbohydrates as are in dates is indicative of a thiamine deficiency.  

Since malabsorption affects all eight B vitamins it is beneficial to take a B Complex supplement as well as additional Thiamine and magnesium. 

Thiamine Hydrochloride, Allithiamine (TTFD), and Benfotiamine, are forms of Thiamine that are available.  I like them all.  High doses are required to correct a deficiency in Thiamine.  Higher doses allow more Thiamine to get into cells easily so we can feel better quickly.  

Hope this helps. I'm happy answer your questions.

 

References:

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

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

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

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/

B-vitamins, related vitamers, and metabolites in patients with quiescent inflammatory bowel disease and chronic fatigue treated with high dose oral thiamine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10601301/

Missing the early signs of thiamine deficiency. A case associated with a liquid-only diet

https://pubmed.ncbi.nlm.nih.gov/30092713/

Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/33210299/

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

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

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

[Raquel2021]

2 minutes ago, knitty kitty said:

@Raquel2021,

Yes, I'm a normal healthy weight now 😸 and I don't have a gallbladder either.  

Tell me what happens when you take vitamins.  You say you can't tolerate them.  Do you throw up?  Pass out?  Have anaphylaxis?  Turn purple?  Climb the walls? 

Do you keep a food/mood/poo'd journal?  

What ingredients are in your usual Vitamin D and sublingual Vitamin D?  What is the source of your Vitamin D?  I know of someone who reacted to Vitamin D because it was derived from lanolin and they were allergic to wool.  Switching to another source of Vitamin D solved that problem.

Keep in mind that when you switch to a gluten free diet, you are no longer getting the vitamins that manufacturers put in gluten containing products to replace vitamins lost in manufacturing as required by law.  Gluten free facsimile foods are not required to be enriched with vitamins.  Gluten free facsimile foods are mostly empty calories and saturated fats.  

A Paleo Diet can be deficient in B vitamins because good sources (like grains) are not consumed.  It's important to choose nutritionally dense foods (like liver).  

Taking vitamins and minerals while you are healing is beneficial.  Supplying additional vitamins and minerals allows our bodies to absorb more of these nutrients easily.  These vitamins are necessary for our bodies to heal and function properly.  

Thiamine helps digest carbohydrates, fats and proteins and turn them into fuel.  When thiamine is in short supply, our body switches from burning carbohydrates (uses up lots of thiamine) to burning fats (uses way less thiamine).  Unfortunately, if we have trouble absorbing fats, our body uses our own fat and even protein from our own muscles to burn for fuel.  This can cause weight loss and loss of muscle.  

Having a sensitivity to sugar and simple carbohydrates as are in dates is indicative of a thiamine deficiency.  

Since malabsorption affects all eight B vitamins it is beneficial to take a B Complex supplement as well as additional Thiamine and magnesium. 

Thiamine Hydrochloride, Allithiamine (TTFD), and Benfotiamine, are forms of Thiamine that are available.  I like them all.  High doses are required to correct a deficiency in Thiamine.  Higher doses allow more Thiamine to get into cells easily so we can feel better quickly.  

Hope this helps. I'm happy answer your questions.

 

References:

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

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

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

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/

B-vitamins, related vitamers, and metabolites in patients with quiescent inflammatory bowel disease and chronic fatigue treated with high dose oral thiamine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10601301/

Missing the early signs of thiamine deficiency. A case associated with a liquid-only diet

https://pubmed.ncbi.nlm.nih.gov/30092713/

Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/33210299/

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

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

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

I have tried multiple brands of vitamins.  The last vitamin D I tried was from New Roots. I can tolerate a small dose of their sublingual b12 (only brand I can tolerate after spending hundreds of dollars ) So I thought vitamin D would work. Symptoms I get are numbness/tingling on the right side of my face. Itchy right side of my face. Feel like I have a cold. Severe insomnia. Celiac like pain. Burning on my stomach. New Roots are gluten/dairy/eggs/ citric acid free. Unfortunately I react to all of those things.  Soy as well. When I get the parasthesia on my face I get really scared. I can sleep much better when I don't take any vitamins.  I know we are very depleted on the gluten-free diet so believe me I have tried everything.  Sometimes I think I might have refractory celiac because I have been gluten-free for 3 years and I am still experiencing a lot of symptoms. I will try thiamine as you and other have insisted so much on those. I had a homocysteine test done in March with very good numbers. 

[knitty kitty]

Yes, facial paresthesia, Bell's Palsy, I have it.  It's Thiamine related.  Thiamine deficiency can cause nerve damage and paresthesia.  It also can be related to herpetic viruses in facial nerves if you've ever had a cold sore or chicken pox.  It flares up if thiamine deficient.  Thiamine has antiviral properties that keeps mine in check.  

I don't think you have refractory celiac.  You're malnourished.  Once you get some vitamins in you, you'll feel better.  

What is your diet like?  What kind of veggies and meat do you eat?  

I can't tolerate soy, corn, yeast, eggs, dairy, gluten, crustaceans, alcohol...High histamine foods bother me.  High histamine levels will give me terrible insomnia.  

When I do have insomnia I take Tryptophan (a form of Niacin B3, that is needed to make melatonin and neurotransmitters like dopamine), Pyridoxine B6 and magnesium.  Out like a light with restful, restorative sleep.

Try Thiamine in the form Benfotiamine.  It's really gentle and promotes intestinal healing.  Try 100 mg with each meal, increasing dose gradually as long as you see improvements.  

The form TTFD (Tetrahydrofurfuryl disulfide) is great for neurological symptoms like paresthesia and neuropathy.  Magnesium threonate works great with this form of Thiamine.   

I understand your exasperation.  I just wanted to feel better, too.  I had become deficient in many  vitamins and minerals due to undiagnosed Celiac Disease.  My doctors were simply clueless.  Stories of my journey are in my blog.  It's traumatizing to go through this.  I understand.  But correcting the nutritional deficiencies definitely will help.  I know this works because I've lived through it and I don't want anybody else to suffer through blindly like I did.  

Best wishes.  Keep us posted on your progress!

[Raquel2021]

8 minutes ago, knitty kitty said:

Yes, facial paresthesia, Bell's Palsy, I have it.  It's Thiamine related.  Thiamine deficiency can cause nerve damage and paresthesia.  It also can be related to herpetic viruses in facial nerves if you've ever had a cold sore or chicken pox.  It flares up if thiamine deficient.  Thiamine has antiviral properties that keeps mine in check.  

I don't think you have refractory celiac.  You're malnourished.  Once you get some vitamins in you, you'll feel better.  

What is your diet like?  What kind of veggies and meat do you eat?  

I can't tolerate soy, corn, yeast, eggs, dairy, gluten, crustaceans, alcohol...High histamine foods bother me.  High histamine levels will give me terrible insomnia.  

When I do have insomnia I take Tryptophan (a form of Niacin B3, that is needed to make melatonin and neurotransmitters like dopamine), Pyridoxine B6 and magnesium.  Out like a light with restful, restorative sleep.

Try Thiamine in the form Benfotiamine.  It's really gentle and promotes intestinal healing.  Try 100 mg with each meal, increasing dose gradually as long as you see improvements.  

The form TTFD (Tetrahydrofurfuryl disulfide) is great for neurological symptoms like paresthesia and neuropathy.  Magnesium threonate works great with this form of Thiamine.   

I understand your exasperation.  I just wanted to feel better, too.  I had become deficient in many  vitamins and minerals due to undiagnosed Celiac Disease.  My doctors were simply clueless.  Stories of my journey are in my blog.  It's traumatizing to go through this.  I understand.  But correcting the nutritional deficiencies definitely will help.  I know this works because I've lived through it and I don't want anybody else to suffer through blindly like I did.  

Best wishes.  Keep us posted on your progress!

Thank you.  I truly appreciate it your responses as I think our journeys are similar.  I jsut have a green smoothie every day. Kale, leafy green, a few raspberries and a banana.  I keep it 70 perfect veggies and 30 percent fruit.  I would eat toast gluten-free with tahini. Lunch and dinner cruciferous vegetables and some form of carb such as sweet potatoes, eddos, yuca, green plantains. Chicken, beef, shrimp, salmon, lamb. Etc any meat really.  I also consume nuts except peanuts and dairy free yogurt.  Occasionally I would have beans. Like black beans or any other beans. Once in a while rice. I eat a good variety of vegetables and limit my fruits because of the sugar intolerance.  I will try the above advice and see what happens.  Thanks again

[knitty kitty]

Try to have some protein at every meal.  Eating smaller meals more frequently will help.  

Do you eat healthy fats?  Olive oil, flaxseed oil?  Salmon is great for healthy fats.

Raw veggies can be hard on the digestive tract.  You might want to rethink the green smoothie. 

Most veggies don't have much thiamine or other B vitamins in them.  Romaine lettuce is high in Thiamine and doesn't need to be cooked.   Beans have more thiamine, but they can be hard on the digestive tract because of hard to digest plant Lectins.  

******Sweet potatoes, and yuca (also known as cassava) contain enzymes (thiaminase) in them that destroy Thiamine.   I hope these have not been a big part of your diet!  Don't eat these very frequently while you are trying Thiamine. *******  

Carbohydrates from sweet potatoes and yuca/cassava are going to break down into simple sugars which need thiamine to turn them into fuel.  You may want to decrease the frequency you eat these. 

Your difficulty with fruit could be fructose malabsorption which is common in CeD.  You'll do well to limit fruits with high fructose levels until you get your Thiamine up.  

Focus on meat and healthy fats.    Eat more cooked leafy green veggies. 

You're doing all right.  

[Raquel2021]

8 hours ago, knitty kitty said:

Try to have some protein at every meal.  Eating smaller meals more frequently will help.  

Do you eat healthy fats?  Olive oil, flaxseed oil?  Salmon is great for healthy fats.

Raw veggies can be hard on the digestive tract.  You might want to rethink the green smoothie. 

Most veggies don't have much thiamine or other B vitamins in them.  Romaine lettuce is high in Thiamine and doesn't need to be cooked.   Beans have more thiamine, but they can be hard on the digestive tract because of hard to digest plant Lectins.  

******Sweet potatoes, and yuca (also known as cassava) contain enzymes (thiaminase) in them that destroy Thiamine.   I hope these have not been a big part of your diet!  Don't eat these very frequently while you are trying Thiamine. *******  

Carbohydrates from sweet potatoes and yuca/cassava are going to break down into simple sugars which need thiamine to turn them into fuel.  You may want to decrease the frequency you eat these. 

Your difficulty with fruit could be fructose malabsorption which is common in CeD.  You'll do well to limit fruits with high fructose levels until you get your Thiamine up.  

Focus on meat and healthy fats.    Eat more cooked leafy green veggies. 

You're doing all right.  

Yes. I use olive oil for cooking.  Also consume nuts and avocados

[knitty kitty]

2 hours ago, Raquel2021 said:

Yes. I use olive oil for cooking.  Also consume nuts and avocados

That's great!  Those are healthy fats.  🐱