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News: Foods labelled 'gluten-free' not trustworthy

Scott Adams
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Scott Adams Grand Master
Scott Adams
Posted

Patients have long suspected that gluten contamination in restaurant foods is a frequent ... Suffering from coeliac disease and want to avoid gluten?

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    • knitty kitty
      Lymphocytic Colitis with Celiac

      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.
    • DebJ14
      Newly Diagnosed

      By DebJ14 · Posted

      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.  
    • trents
      Newly Diagnosed

      By trents · Posted

      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.
    • NCalvo822
      Newly Diagnosed

      By NCalvo822 · Posted

      Definitely useful info. Thank you!
    • Scott Adams
      Newly Diagnosed

      By Scott Adams · Posted

      It's possible that your doctor wants you to do an endoscopy to confirm the diagnosis, and if that is the case that could be why they don't want you to go gluten-free before that procedure is done.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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