TEDDY Update Highlights Progress on Type 1 Diabetes and Celiac Disease Research

I'm a Type 1 diabetic. I've had "Silent Celiac Disease" since a wee tot. Bloated stomach, arms, face and legs, you name it, I have it! Plus I cried all the time and held my abdomen. My father served in WWII and the Korean War. He built our home with his own hands and we lived in an army barrack on our little plot of land. We were poor! We made do! He obtained his GED, attended college and obtained a chemistry degree. You either worked and went to school or you didn't survive. There was no government handouts like today, which is insane! My father got care from the VA office but could not get a diagnosis of Type 1 diabetes. Doctors everywhere called him insane, crazy, you name it! He was finally diagnosed by a doctor and co-worker at the United States Public Health Service, who said "John, you act like a diabetic!" I too think he had Celiac Disease. I don't know if had diarrhea or not. He developed Microscopic Colitis in his 30s when gastroenterologist did not have a clue what it was or how to treat it. They still don't know how to treat it! So he was stuck at home with 30 rushes to the bathroom with explosive diarrhea. He was dogged tired, thin as a rail, lost all his hair and angry. He knew his life was going to end early. He died at age 50. My great grandfather died from the same diseases at age 34. My great great grandfather had the same diseases and died at age 25. There was no insulin, for Type 1 diabetes, so it was a death sentence.

 I have Type 1 diabetes, Silent Celiac Disease and Microscopic Colitis.  Doctors don't want or know how to help you with any of these autoimmune diseases. They only want your money. They are USELESS!

For Type 1 diabetes, Celiac Disease and Microscopic Colitis that doctors refuse to help us with or find a cure. But they found a cure for AIDS that was only discovered in the 1990s and Type 1 Diabetes, Celiac Disease and Microscopic Colitis has been around since the beginning of time. Type II diabetes started when people became fat and ate the wrong foods. No vegetables, fruit, healthy meat, and artificial everything. Mothers don't cook for their children any longer. Just give them fast foods and empty calories while they lay around playing on their cell phones. They get no exercise and develop Type II diabetes. Changing their lifestyle will get rid of Type II diabetes. But no, too many pharmaceutical companies want to give them a pill for this, for that...when all they have to do is eat healthy food, exercise and maintain a healthy weight.

I don't expect a cure in my lifetime for Type 1 diabetes and these autoimmune diseases. We're the CASH COW and the GOLDEN GOOSE THAT LAYS THE GOLDEN EGGS. Pharmaceuticals companies, doctors, The National Diabetic Association, Juvenile Diabetes Association and the list goes on forever. We make them rich. They don't want a cure. Autoimmune disease are IGNORED!

There isn’t a cure for aids, but there is a treatment drug therapy for it. Researchers are working on treatments for all autoimmune diseases.

Dolson, 

I understand and empathize with your feelings about the medical profession' ineptitude in treating autoimmune diseases like diabetes and Celiac Disease.

Perhaps these research articles might help you.

"Evidence for altered thiamine metabolism in diabetes: Is there a potential to oppose gluco- and lipotoxicity by rational supplementation?" 

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"Effect of Dietary Thiamin Deficiency on Intestinal Functions in Rats"

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

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This is the article that started me on a high dose thiamine regimen that has significantly improved my type II diabetes and my Celiac Disease.

"Diabetes and Thiamine: A Novel Treatment Opportunity"

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I agree enthusiastically that doctors prefer prescription medications for monetary gain instead of overlooking and neglecting the use of a simple inexpensive vitamin, thiamine, in the prevention and improvement of many illnesses.  

The addition of Thiamine to wheat flour,  in order to replace what was removed or destroyed in processing, was only begun in the 1940's during World War II, but only in minimal quantities which were supposedly sufficient to prevent disease.  They did not know that during stress our requirements for thiamine increase dramatically.

After the war, profitable synthetic drugs were the main focus and the study of vitamins became rather neglected.  

As a child of an ill angry veteran myself, my heart goes out to you.  I hope these articles will help you on your journey towards health.  Discuss high dose thiamine therapy with your doctor.  

Best wishes,

Knitty Kitty

Thanks Knitty kitty. Can you tell me about your father? My father was impossible to live with and to have a normal childhood. I cried many a day!

When I only had Celiac Disease, life was easier to live a less than semi-normal existence. I knew something was wrong, but didn't know what it was or why I was fatigued, unable to think in normal situations, shakiness, scared, and just didn't feel right. I had no GI disturbances. No diarrhea, no gas, no rushing to the bathroom and my gut felt okay. Not so when I was a wee child. A totally different story. Old photos don't lie! I have a photo of myself holding my stomach and crying. Another photo showed me on a hot day with my shirt off and I'm poking a stick into my huge bloated stomach. Sure I had problems as a child: brain fog, bloated body, extreme shakiness, fatigue and out of sorts. Adolescence was a problem. I knew something wasn't right. What? I don't know. I didn't have the energy or coordination to be a cheerleader or play basketball in high school, so I joined the choir. Dating was another thing. I was scared to date. I wanted to be like all the other girls and be chatty Cathy and have fun. The only fun I had was when I was drinking. It calmed the nerves and gave me confidence. This does not sound like Celiac disease, does it? I have spent so many dollars on doctors, I know I've bought them several Mercedes Benz luxury cars. I went from doctor to doctor and always heard the same song and dance. No answers! My friend and I went swimming and she said "your stomach, why is it like that?" I still didn't get it.

Life has always been a tough road to follow. My father had Type 1 diabetes and then comes along Microscopic Colitis. Back in the 1970s, the GI specialists didn't have a clue. They still don't. My father wanted to be a success but found it hard. He had the brains, but not the body to take him through life. I became a RN and remembered a doctor explain that northern Europeans are the ones to get Type 1 diabetes and other autoimmune diseases. I agree with that wholeheartedly. My autoimmune diseases are from my Irish background. I was hoping it would skip, but it got me. Now I have Microscopic Colitis, and that's the tricky one. You have to send your stool sample to a reputable lab for testing. I like Dr. Fine's Lab. Great guy! MC is tricky and complex! There is so much we can't eat, but I'll do whatever it takes to get healthy, if that's possible. Soy seems to be the worst of the bunch along with gluten and milk. Soy is in everything.

My mother and father had it rough. Both had detached parents. It was mandatory that my father join the Navy. He had to quit high school before the draft and fight in WWII. After the war he got his GED and started college, but the Korean War got him! He was bitter and I was scared all the time. I cried constantly! Then he became a type 1 diabetic.

I too am angry. I have three autoimmune diseases along with Spasmodic Torticollis, - under the umbrella "Dystonia." I inherited my ST from my mom's side. All her 11 brothers and sisters showed signs of the disease. Now my first cousins are showing signs. It's Genetic! It's in the basal ganglia of the brain that controls movement and we produce abnormal amounts of acetylcolene, a neurotransmitter. The muscles become tight and stiff and it's extremely painful! I've had seven nerves severed in my neck and get Myobloc injections every four months. Now seven months because of Covid-19.

I wish we could pick our parents! If we could, I'd pick healthier ones because every disease I have is inherited. That's why I am angry. I am tired of being sick and now with COVID -19, it's hard to get a doctor's appointment. I'm going without care. I understand, but we need doctors for help. I feel we're living in Biblical Historic Times! 

I hope this go round, I don't get my lines of messages deleted. I really don't think I said anything that was out of line the last time. We are sick people. We don't feel well. We are not happy people. We have a gripe and isn't this a forum to speak your mind in a peaceful and honest manner? This is not Facebook, thank goodness. No fighting. We need to love each other and be supportive.

That was my true story and I can't believe you deleted a lot of what I said. Life is not candy-coated and painted in pink! There are many dark and gray areas in our life and we need to vent. I don't understand! Isn't this is a support group? Dorothy Rockwell Olson William  

Hi, Dorothy!

I'm so sorry you've been through so much.  But you're not alone.  

Your story sounds similar to mine, gastrointestinal problems as a child that got ignored, laughed at, or simply dismissed as psychosomatic, symptoms changing and worsening health as I got older.  I look back now and see how my parents were dealing with illnesses of their own caused by these same inherited genes, just different manifestations.  

Yes, I agree our problems are genetically linked.  I'm a microbiologist and have done tons of research.  I found that the genes for Celiac and diabetes and other autoimmune problems are on the same gene.  Also on this gene is a control mechanism that turns off thiamine receptors in your body.  When the thiamine receptors get turned off, our bodies start malfunctioning due to thiamine deficiency, but not the classic beriberi symptoms.  The way to turn the thiamine receptors back on is to take high doses of thiamine.  Flooding the system with thiamine so that the thiamine gets into cells without the receptors will eventually turn the thiamine receptors back on.  Thiamine needs magnesium to work effectively.  Thiamine and magnesium help the mitochondria provide energy for brain and body functions like digestion, insulin production, and healing your intestines and nerves and brain function controlling everything.  

Here are some studies showing improvement with high dose thiamine and magnesium therapy...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4964157/

https://www.oatext.com/Thiamine-and-dystonia.php#gsc.tab=0

Please talk to your doctor about trying high dose thiamine.  I know it worked for me.  I found Dr. Derricks Lonsdale's website www.hormonesmatter.com a revelation.

Here's a synopsis about him...

https://www.needs.com/product/NDNL-1612-02/l_vitaminB1

I take the Allithiamine Dr. Lonsdale recommended and the changes and improvements have been astounding.  

Doctors would rather prescribe medications that hide the symptoms without solving the actual problem.  Dr. Lonsdale has found what causes the problem and how to fix it, but has been ignored by the medical profession because they want their fancy cars.  (Bought a few myself.)   And patients have been brainwashed into thinking they need a pill or a procedure to get fixed when it is really an inexpensive vitamin that our bodies are craving and disintegrating without.  My doctor flat out refused to check for vitamin deficiencies because he said "I can't make money prescribing vitamins."  He didn't get the rest of that car with my money.

There is no toxicity level to thiamine.  Thiamine won't hurt you if you take it in high doses.  Diabetics have a higher metabolic demand for thiamine.  In fact, thiamine in high doses, along with vitamin C, D, and zinc, is being used in the intubated Covid 19 patients in ICU's because thiamine keeps their bodies functioning while they fight the virus.  Your body needs lots of energy when under stress such as the viral infection or other illness,  physical or mental stress.  Thiamine is wonderful! 

I took over the counter thiamine supplements, Allithiamine, because I couldn't get a doctor to listen to me and I could feel myself dying.  Their prescription medications just made me worse.  It's been a dramatic difference since starting on thiamine.  I hope you will try it.  I am not a doctor.  Check with your doctor.  But there's no harm in high dose thiamine.  It's made all the difference in the world to me. 

Remember that all of the eight B vitamins work together, so adding a B Complex vitamins is helpful as well.  I take additional niacin as well.  Dr. Hoffer's book on Niacin has been helpful as well.  Thiamine and Niacin work together to provide the energy your body needs to function optimally.  Niacin is needed to heal your intestines...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5412792/

If you're at the end of your rope like I was, I do hope you will try it and see what an improvement thiamine will make.  There's a bit of things worsening at first as your body starts functioning properly again, but that goes away quickly.  

You're sick not because you are medicine deficient, but because you're vitamin deficient.  Give your body the vitamins it needs to heal itself.  

Hoping this helps,

Knitty Kitty

I wanted to respond to you only through my email, since everything I say on Celiac.com gets deleted. It's his site, but gee whiz, I'm afraid to post anything because he gets upset and destroys my message.

You and I have similar backgrounds for sure. My father was sick all the time, upset and angry and he wanted to finish his chemistry degree but called back to fight the Korean War after his service in WWII. He was raised by his father, my grandfather, who was thrown away because two people unmarried had him and was taken to South Dakota for adoption. He was found as a baby wandering the streets in South Dakota. He was adopted before the 1900s by a Norwegian woman and she was harsh, as stated in my father's autobiography. She came from Norway with no husband and needed slave labor in Omaha, NE. Thus my grandfather was adopted to work the fields and was treated poorly. I went on Ancestry and found his parents. My grandfather's father is a Rockwell and my grandfather's mother was a servant in the Rockwell household in Columbus, OH. The mother sent my grandfather away to the SD territory for adoption. I don't know what hell he went through but an article stated he was found wandering the streets as a baby.

When my father came back from the Korean War, I was born. He never got to finish his degree. He wanted to be "somebody!" He worked for the US Public Health Service on Oatland Island, Savannah, GA. It became part of the CDC, eventually. He worked with mosquitoes and their various diseases. He worked with doctors, entomologists, chemists, and everyone had a degree, medical degree, masters or doctorate. Because he didn't have a chemistry degree, he was paid less, so we had to struggle. My mother came from a family of 11 children and she got lost in the shuffle of so many kids, in rural Georgia. She had minimal parenting skills and wanted all the attention since she was called "BEAUTY."

My father could not get a diagnosis that he was diabetic. He went from doctor to doctor and all called him crazy! A doctor and good friend at the US Public Health Department, said "John, you act like a diabetic!" He finally got a diagnosis. Sad state of affairs to go on that long and not get a diagnosis of Type 1 diabetes. I think it's typical in the south. We have poor health care today in Savannah, GA. I know being a RN. The hospitals and doctors are AWFUL! Now they are corrupt! They send out bills from doctors you have never visited. I was sexually assaulted by a well-known doctor from Savannah, a pillar of Savannah and I reported him. He nearly raped me. Afer I reported him, extreme retaliation was started by the CEO, at St. Joseph's Hospital. I had a breakdown because of the retaliation and put myself into a mental facility in Savannah. I was blackballed by the hospital and could not find work anywhere, even outside of Savannah in small towns. I got married and worked various jobs as a RN, in Texas but was still traumatized. I found a therapist and labeled PTSD in San Marcos, TX!

I came back to Savannah in 2012, because my Mom's health was deterioating and was still having bouts of PTSD! I could not find a therapist because they are scared of St. Joseph's Hospital in Savannah. This is my hometown but I have a love/hate relationship with Savannah, GA. My husband and I moved to Hilton Head, SC, but I've experienced bad health care at the medical school in Charleston, SC.

As a child I never felt well. As I have stated, I had a bloated stomach and body but was ignored. My stomach was huge in old photos but nothing was done. I had canker sores in my mouth and acted strange. People treated me as a misfit nutcase as a child. I didn't know what was wrong. My father even called me a "misfit!" All I know was sickness, dizziness, shakiness and messed up as a kid.     

 We can't find thiamine in the stores. We are going to have order the vitamins. Are there any you recommend on-line? I want my life back! Thanks, Dorothy Rockwell Olson Williams

On 7/24/2020 at 8:29 PM, knitty kitty said:

Hi, Dorothy!

I'm so sorry you've been through so much.  But you're not alone.  

Your story sounds similar to mine, gastrointestinal problems as a child that got ignored, laughed at, or simply dismissed as psychosomatic, symptoms changing and worsening health as I got older.  I look back now and see how my parents were dealing with illnesses of their own caused by these same inherited genes, just different manifestations.  

Yes, I agree our problems are genetically linked.  I'm a microbiologist and have done tons of research.  I found that the genes for Celiac and diabetes and other autoimmune problems are on the same gene.  Also on this gene is a control mechanism that turns off thiamine receptors in your body.  When the thiamine receptors get turned off, our bodies start malfunctioning due to thiamine deficiency, but not the classic beriberi symptoms.  The way to turn the thiamine receptors back on is to take high doses of thiamine.  Flooding the system with thiamine so that the thiamine gets into cells without the receptors will eventually turn the thiamine receptors back on.  Thiamine needs magnesium to work effectively.  Thiamine and magnesium help the mitochondria provide energy for brain and body functions like digestion, insulin production, and healing your intestines and nerves and brain function controlling everything.  

Here are some studies showing improvement with high dose thiamine and magnesium therapy...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4964157/

https://www.oatext.com/Thiamine-and-dystonia.php#gsc.tab=0

Please talk to your doctor about trying high dose thiamine.  I know it worked for me.  I found Dr. Derricks Lonsdale's website www.hormonesmatter.com a revelation.

Here's a synopsis about him...

https://www.needs.com/product/NDNL-1612-02/l_vitaminB1

I take the Allithiamine Dr. Lonsdale recommended and the changes and improvements have been astounding.  

Doctors would rather prescribe medications that hide the symptoms without solving the actual problem.  Dr. Lonsdale has found what causes the problem and how to fix it, but has been ignored by the medical profession because they want their fancy cars.  (Bought a few myself.)   And patients have been brainwashed into thinking they need a pill or a procedure to get fixed when it is really an inexpensive vitamin that our bodies are craving and disintegrating without.  My doctor flat out refused to check for vitamin deficiencies because he said "I can't make money prescribing vitamins."  He didn't get the rest of that car with my money.

There is no toxicity level to thiamine.  Thiamine won't hurt you if you take it in high doses.  Diabetics have a higher metabolic demand for thiamine.  In fact, thiamine in high doses, along with vitamin C, D, and zinc, is being used in the intubated Covid 19 patients in ICU's because thiamine keeps their bodies functioning while they fight the virus.  Your body needs lots of energy when under stress such as the viral infection or other illness,  physical or mental stress.  Thiamine is wonderful! 

I took over the counter thiamine supplements, Allithiamine, because I couldn't get a doctor to listen to me and I could feel myself dying.  Their prescription medications just made me worse.  It's been a dramatic difference since starting on thiamine.  I hope you will try it.  I am not a doctor.  Check with your doctor.  But there's no harm in high dose thiamine.  It's made all the difference in the world to me. 

Remember that all of the eight B vitamins work together, so adding a B Complex vitamins is helpful as well.  I take additional niacin as well.  Dr. Hoffer's book on Niacin has been helpful as well.  Thiamine and Niacin work together to provide the energy your body needs to function optimally.  Niacin is needed to heal your intestines...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5412792/

If you're at the end of your rope like I was, I do hope you will try it and see what an improvement thiamine will make.  There's a bit of things worsening at first as your body starts functioning properly again, but that goes away quickly.  

You're sick not because you are medicine deficient, but because you're vitamin deficient.  Give your body the vitamins it needs to heal itself.  

Hoping this helps,

Knitty Kitty

Hi Knitty Kitty,

Could you please contact me directly. My email address: dolson_williams@hotmail.com .

Dorothy Rockwell Olson Williams

7 hours ago, Guest Thiamine said:

I wanted to respond to you only through my email, since everything I say on Celiac.com gets deleted. It's his site, but gee whiz, I'm afraid to post anything because he gets upset and destroys my message.

You and I have similar backgrounds for sure. My father was sick all the time, upset and angry and he wanted to finish his chemistry degree but called back to fight the Korean War after his service in WWII. He was raised by his father, my grandfather, who was thrown away because two people unmarried had him and was taken to South Dakota for adoption. He was found as a baby wandering the streets in South Dakota. He was adopted before the 1900s by a Norwegian woman and she was harsh, as stated in my father's autobiography. She came from Norway with no husband and needed slave labor in Omaha, NE. Thus my grandfather was adopted to work the fields and was treated poorly. I went on Ancestry and found his parents. My grandfather's father is a Rockwell and my grandfather's mother was a servant in the Rockwell household in Columbus, OH. The mother sent my grandfather away to the SD territory for adoption. I don't know what hell he went through but an article stated he was found wandering the streets as a baby.

When my father came back from the Korean War, I was born. He never got to finish his degree. He wanted to be "somebody!" He worked for the US Public Health Service on Oatland Island, Savannah, GA. It became part of the CDC, eventually. He worked with mosquitoes and their various diseases. He worked with doctors, entomologists, chemists, and everyone had a degree, medical degree, masters or doctorate. Because he didn't have a chemistry degree, he was paid less, so we had to struggle. My mother came from a family of 11 children and she got lost in the shuffle of so many kids, in rural Georgia. She had minimal parenting skills and wanted all the attention since she was called "BEAUTY."

My father could not get a diagnosis that he was diabetic. He went from doctor to doctor and all called him crazy! A doctor and good friend at the US Public Health Department, said "John, you act like a diabetic!" He finally got a diagnosis. Sad state of affairs to go on that long and not get a diagnosis of Type 1 diabetes. I think it's typical in the south. We have poor health care today in Savannah, GA. I know being a RN. The hospitals and doctors are AWFUL! Now they are corrupt! They send out bills from doctors you have never visited. I was sexually assaulted by a well-known doctor from Savannah, a pillar of Savannah and I reported him. He nearly raped me. Afer I reported him, extreme retaliation was started by the CEO, at St. Joseph's Hospital. I had a breakdown because of the retaliation and put myself into a mental facility in Savannah. I was blackballed by the hospital and could not find work anywhere, even outside of Savannah in small towns. I got married and worked various jobs as a RN, in Texas but was still traumatized. I found a therapist and labeled PTSD in San Marcos, TX!

I came back to Savannah in 2012, because my Mom's health was deterioating and was still having bouts of PTSD! I could not find a therapist because they are scared of St. Joseph's Hospital in Savannah. This is my hometown but I have a love/hate relationship with Savannah, GA. My husband and I moved to Hilton Head, SC, but I've experienced bad health care at the medical school in Charleston, SC.

As a child I never felt well. As I have stated, I had a bloated stomach and body but was ignored. My stomach was huge in old photos but nothing was done. I had canker sores in my mouth and acted strange. People treated me as a misfit nutcase as a child. I didn't know what was wrong. My father even called me a "misfit!" All I know was sickness, dizziness, shakiness and messed up as a kid.     

 We can't find thiamine in the stores. We are going to have order the vitamins. Are there any you recommend on-line? I want my life back! Thanks, Dorothy Rockwell Olson Williams

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Thanks for this great information! Dorothy

My son recently had frequent urinating and drinking more water and his blood work showed he has high blood sugar. Doctors first day within one hour decided he have type 1 diabetes and started brainwashing me about taking insulin is only thing .i didn’t sleep last couple of day, I have a surety that he going to be it only temporarily due to some defficency. How much thiamine with magnesium need for 4years old. I know doctors will never let you know. Also I have heard going gluten free will help to get his guts heal and his pancreas can produce normal insulin after that. Can he take thiamine if he is gluten free.i want to try all the stuff I can.thanks a lot please reply if you can help me.
 

Mandeep,

Probably not a good idea to post your email address on a public forum. This forum has a Personal Messaging feature for that purpose if you register as a user. Also, no need to double post just to add some information. There is an editing tool for that but it may have a time limit. I suggest editing out your email address and actually join the forum so that others can PM you. If you need us to, an admin can edit out your email address. I'm afraid you are putting yourself at a security risk by publishing your email address. And at least, you are opening yourself up to a boatload of spam.

Having said that, I would also need ask, has your son actually been diagnosed with Celiac Disease? His diabetes would be type 1 (aka, "juvenile diabetes). We do know that there is gene overlap with Celiac Disease and some other autoimmune diseases such as diabetes but I'm not sure that is true of type 1. I would not assume that eating gluten free and taking vitamin supplements will eliminate the need for your son to take insulin. It is very important that you keep his diabetes under control.

Mandeep,

Trents is correct that Type One diabetes is an autoimmune disease in which the immune system erroneously attacks itself and can cause damage to the cells of the pancreas so that not enough insulin can be produced to keep a person alive. 

The person in the previous post whose father had diabetes had incorrectly identified his diabetes as Type One.  Her father had Type Two diabetes.  This was clarified in a different post.

A person with Type One diabetes cannot make any insulin at all or only an extremely low amount of insulin that is not life sustainable.  

A person with Type Two diabetes can still make insulin, but needs medication to stimulate insulin production, and/or diet changes and lifestyle changes. 

We're not doctors here and cannot diagnose.

You can ask your son's doctor to test for thiamine deficiency, and administer high dose thiamine in an IV.  Thiamine administration would be harmless as there's no toxicity to thiamine.  

You can ask the doctor to do tests to tell how much insulin your son's pancreas is actually producing, or biopsy to see how many insulin cells are still working.  

As the article states, the damage could have been ongoing for a while before his symptoms became apparent.  

You should work with your doctor to provide the best possible outcome for your son.

Please keep us posted on your son's progress.  

Best wishes,

Knitty Kitty