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- NCalvo822 replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease13Newly Diagnosed
Thank you. Very helpful. -
- knitty kitty replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease13Newly Diagnosed
Migraines can be caused by Thiamine deficiency. Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long. All the B vitamins work together to make energy, ATP, which is used to fuel all the cell activity. Without Thiamine, the energy production cycle doesn't even get started. There's studies done on mice showing thiamine... -
- knitty kitty commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease2
Celiac Disease Triggers Cognitive Deficit and White Matter Changes in the Brain (+Video)
Thiamine can help protect the brain from damage. White spots in the brain can be caused by Thiamine deficiency. Correcting nutrient deficiencies in Celiac Disease and boosting our absorption of vitamins and minerals by taking supplements can help repair and improve our health.- brain damage
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- trents commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease2Celiac Disease Triggers Cognitive Deficit and White Matter Changes in the Brain (+Video)
This caught my attention: "More importantly, these changes may not go away completely—even when the patient is following a strict gluten-free diet. Previous research has shown that neurological damage caused by gluten may be long-lasting or even permanent in some cases. This underscores the importance of early diagnosis and strict adherence to a gluten-f...- brain damage
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- knitty kitty replied to CeliacPI's topic in Related Issues & Disorders10
Lymphocytic Colitis with Celiac
Thank you, @Oldturdle, I greatly appreciate that. I've always been a curious kitty. I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me. It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly. This...
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By knitty kitty · Posted
Migraines can be caused by Thiamine deficiency. Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long. All the B vitamins work together to make energy, ATP, which is used to fuel all the cell activity. Without Thiamine, the energy production cycle doesn't even get started. There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers. The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly. They have a higher metabolic need for thiamine. Supplementing with extra thiamine helped them tremendously. Migraines have run in my family for several generations, too. Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished. TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too. Thiamine is safe and nontoxic even in high doses. There is no upper limit because thiamine has never caused a death even in high doses. It is excreted via kidneys if not needed or not absorbed. -
By knitty kitty · Posted
Thank you, @Oldturdle, I greatly appreciate that. I've always been a curious kitty. I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me. It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly. This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function. Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state. However, not all people present with all three symptoms. Many (80%) don't get diagnosed until their autopsy. Alcohol has to be processed through the liver. If there's insufficient thiamine, Alcoholic Fatty Liver develops. In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body. Alcohol also prevents absorption of calories from food and other nutrients. Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver. However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity. In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food. If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP. For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP, the "bitcoin" of energy in our bodies. Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome. My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy, because I didn't drink alcohol, although I had ataxia and an altered mental state. Doctors don't think outside the box! I went home and took thiamine. I had improvement in my symptoms within an hour. High doses of thiamine are required to correct Thiamine deficiency. Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs. ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.). And I've kept learning and sharing that knowledge to help others. It's wonderful you've been supplementing with vitamins so long! Don't worry about the bright yellow urine. That's excess Riboflavin B 2. Interesting note, Riboflavin glows under black light! Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing. Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light. Fun for Halloween. I hope you feel better, @Oldturdle. If I can be of further help anytime, you can send a personal message here. Thanks for reading my posts. P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine. -
Migraines ran in my family, on my father's side. All of my female first cousins on that side, and our grandmother suffered from Migraines. Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007. The dermatitis herpetiformis rash is a blistery, super itchy rash. When they do the biopsy they take it from non-involved skin that is next to the rash. If done wrong, the results may not be accurate. Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy. But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.
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Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.
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