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Beverage

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  1. Like
    Beverage
    Beverage reacted to Wheatwacked in Yeast infections   
    Have you had a test for vitamin D level?
    “vitamin D deficiency is associated with increased autoimmunity and susceptibility to infection.” Low levels of vitamin D were also found in those suffering with Candida, yeast, bacterial overgrowth, and various digestive disorders.  Vitamin D Deficiency: Why We Can’t Do Without The Happy Hormone
    Iodine for Vaginal Problems.Iodine is naturally antimicrobial and can fight off nasty single-celled organisms like viruses, bacterium, fungi, and protozoa that are often the cause of vaginal problems. 10 drops of Liquid Iodine supplies 500 micrograms of Iodine. One doctors office found 66% of their childbearing age patients were deficient. 
     
  2. Upvote
    knitty kitty
    Beverage got a reaction from knitty kitty in Vitamin supplements   
    Magnesium glycinate is supposed to be the best for sleep, but for some, causes insomnia.  It makes me sleep wonderfully for about 2 nights, then insomnia after that. I have read in several different places that some people react like that, apparently it's the glycine. I now use a different Magnesium with no glycinate. 
  3. Upvote
    Beverage
    Beverage reacted to knitty kitty in Persistent nausea 6 weeks gluten free   
    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!
  4. Upvote
    Beverage
    Beverage reacted to knitty kitty in Persistent nausea 6 weeks gluten free   
    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/
  5. Upvote
    Beverage
    Beverage reacted to Maggieinsc in Persistent nausea 6 weeks gluten free   
    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
  6. Upvote
    knitty kitty
    Beverage got a reaction from knitty kitty in Feeling of food getting stuck   
    Before I was diagnosed with Celiac's, I had a lot of acid reflux, food getting stuck all the time, it was awful.
    It reduced a lot after I was finally diagnosed and healed a bit, but some still persisted.  It seemed to be further up my esophagus as time went on, chronic dry cough and scratchy voice, asthma worsened.
    I finally went back to my ENT, and he said it was  probably silent reflux. He just wanted to prescribe antacids, but I'd read so much about how important acid is to getting nutrients out of our food, especially vitamin D and Calcium, which as someone with Celiacs, I did not want anything that would inhibit absorption of vitamins.
    I of course went to Dr. Internet Search and found tons of info that many things reduce our stomach acid...medications, aging, etc. and acid reflux and esophagus irritation is usually caused by NOT ENOUGH acid, the food will ferment and / or rot causing the flux and irritation to the lining of the esophagus and sphincters.
    I got tremendous relief from following this:  https://drjockers.com/hiatal-hernia/.  The things that I noticed right away, and I still continue with, are: 
    1. the warm water fix / thumping feet down in morning
    2. elevating head of bed, only needed a few inches at head and the improvement was notable first night
    3. sip of apple cider vinegar with a dash of water before any meals with protein, YES most people need MORE acid, not less
    4. digestive enzymes with meals
    5. DGL deglycyrrhizinated licorice, chew 1 or 2 after any meals giving me problems, this does not reduce stomach acid, it coats the lining (it can elevate BP a little for some if you take it a lot, but I now take 1 after dinner most nights and no problem, I used to have to take 2 or more)   https://www.amazon.com/gp/product/B001WUC406/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1
    Also, I had gotten advice from @knitty kitty on thiamine, and had lots of improvement in asthma.  You may not have asthma, but it was something I had mildly for awhile, and it got a lot worse after I had Celiacs.  I take this one: https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1
    Best of luck, I feel your pain, but try a few things, make a log of what you are trying and keep track of any changes.
  7. Upvote
    knitty kitty
    Beverage got a reaction from knitty kitty in Fever From Gluten?   
    That's more like the symptoms I get after being glutened, like a flu, joint and muscle aches and mentally down.  Sometimes I get a low fever, but I rarely get fever normally, even with Covid I didn't get above 99, normal temp is 97 max.  That's the frustrating part, never really know if it's gluten or a cold/flu.  Only difference for me since I don't usually get the big D, is with gluten, a bubbly fizzy feeling in intestines, like really good soda pop fizzing and a little ick bloatey feeling, and I don't feel like eating.  With flu/cold, no problem eating. 
  8. Upvote
    Beverage
    Beverage reacted to Wheatwacked in Still ongoing....   
    If you could post your tests someone on the forum can give you a second opinion evaluation of their interpretation of them.  Test, result, range.
    Your colds would be a strong indication of vitamin D deficiency and zinc deficiency. Even the NHS says: "Government advice is that everyone should consider taking a daily vitamin D supplement during the autumn and winter."  I've been taking 250 mcg a day (10,000 IU) since 2015 to keep my blood 25 hydroxy D level at 200 nmol/L (80 ng/ml).
    As soon as you feel a cold coming on, zinc glyconate lozenge coats the mucous membranes. Zinc is the body's antiviral protection.  My last cold was May 2004.  "Zinc deficiency has been shown to increase the release of proinflammatory cytokines, such as interleukins IL-1β, IL-6, and tumor necrosis factor (TNF)-α .Zinc also has direct anti-viral properties. Zinc has been recognized as therapeutic against other upper respiratory pathogens, such as the common cold. It has been shown that increased intracellular zinc concentrations results in decreased SARS-COV-2 replication " Zinc Supplementation Associated With a Decrease
    A good vitamin B complex, along with Choline supplements may help digestion and energy.
    Celiac Disease causes malnutrition if not treated.  So do other food avoidance schemes.  While waiting to complete testing you should continue to eat a least 4 slices of bread.  Unfortunately, the sicker you are the greater chance of testing positive.  In the meantime it's never too early, or late, to start rectifying your multiple vitamin and mineral deficiencies, whatever the cause.
  9. Upvote
    Beverage
    Beverage reacted to knitty kitty in Celiac Disease and Small Fiber Neuropathy   
    I had neuropathy from my toes to thighs, and in my hands and arms.  I even managed to scald my hands by hot water while washing dishes.  My hands were so affected I couldn't tell the temperature of the water.  I couldn't knit or embroider because I couldn't feel the needles.  
    I took a combination of Thiamine, Pyridoxine, and Cobalamine (Vitamins B 1, B 6, and B12) and my neuropathy began to improve.  I don't have any residual tingling nor pain.  These vitamins together have been shown to alleviate pain, and heal damaged nerves.
    Celiac Disease affects the absorption of vitamins and minerals from food.  Doctors seem to ignore these micronutrients deficiencies that occur in Celiac Disease.  Doctors routinely check only for B12 and Vitamin D deficiencies.  These are the only two vitamins that can be stored in the liver for longer periods of time.  Doctors don't routinely test for other vitamin deficiencies because blood levels do not reflect deficiencies.  Deficiency symptoms can occur before blood levels change.  Blood levels may remain within "normal" levels while the vitamin deficiencies occur in organs and tissues like muscles.  
    Do talk to your doctor or a nutritionist about supplementing with the eight essential B vitamins, Vitamins C and D, and minerals like magnesium and calcium while healing.  
    References:
    Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review
    https://pubmed.ncbi.nlm.nih.gov/35156556/
    The Role of Neurotropic B Vitamins in Nerve Regeneration
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8294980/
    Mitochondrial damage and "plugging" of transport selectively in myelinated, small-diameter axons are major early events in peripheral neuroinflammation
    https://pubmed.ncbi.nlm.nih.gov/29486771/
     
  10. Upvote
    Beverage
    Beverage reacted to knitty kitty in Negative or weak postive test, however reduced gluen consumption   
    @emoxon,
    I understand how doctors can blame the patient when they, the doctors, are out of answers.  
    I was told it was all in my head when I had severe nutritional deficiencies with undiagnosed CeD.  My blog has more details.  
    Can you get a genetic test to look for the most common Celiac genes?  
    Some people have the genes, but they don't have active Celiac Disease.  The genes need to be activated by a triggering event, like an illness or trauma.  Not all genes for Celiac Disease are known at this time, but they have identified lots of them.
    But if you have the genes, and improvement on a gluten free diet, the genes can be assumed to have been activated and that you have CeD.  This is how I was finally diagnosed.  
    Anemia, diabetes and nutritional deficiencies can cause false negatives on blood tests for Celiac Disease, like mine did.  
    A genetic test is available through your doctor or there are home testing kits available. 
    You're not alone.  There's many of us here that have been sick their whole lives and searching for answers.  We are cheering you on. 
    Be encouraged! 
  11. Thanks
    Beverage
    Beverage reacted to knitty kitty in Negative or weak postive test, however reduced gluen consumption   
    The GP can't blame you if she doesn't know, and pass on, the proper protocol for gluten challenges before testing.  
    Getting a proper Celiac Disease diagnosis can be delayed by ten years because doctors are not knowledgeable about testing prerequisites.  
    Write a letter on paper to your doctor requesting another test due to the reasons above and sending a copy to the medical board.  Doctors need to learn, too.
    Keep us posted on your progress.
  12. Upvote
    Beverage
    Beverage reacted to Wheatwacked in Bitters for digestion?   
    Welcome AnnaNZ,
         Sounds like you have a good doctor. The fact that you had improvement on GFD indicates that you have either Celiac Disease or Non Celiac Gluten Sensivity.  A few weeks on a gluten free diet according to some researchers should not have affected your antigens.  People still test positive after months of gluten free.  Besides, you were still consuming wheat in your muesli. Once you feel up to it a Gluten Challenge with the latest recommendations would be a good idea if you want to differentiate between the two Gluten Sensitivities.  An endoscopy with biopsies for Celiac Disease can be possitive, even though blood tests are negative.
           Based on your story the answer is that you are suffering from Vitamin D deficiency, Thiamin deficiency, and Choline deficiency.  Probably others as well.  It is not something doctors are taught to look for.
          It seems that normally the Celiac Genes are modulated by vitamin D, but when an illness strikes it overtaxes our immune system and depletes vitamin D.  Around 40% of the developed world has low or deficiency in D.  Why? We have been scared into overprotective measures against UV light.  And due to a manufacturing error in infant formula in England in the 1950 most of the world banned vitamin D fortification. Without UV light we don't make vitamin D.  In the US there are only about a million cases of skin cancer so it works for that.  Unfortunately there are 50 million cases of autoimmune disease.  With low D your immune system is compromised.  Daily oral dosing of vitamin D3 using 5000 TO 50,000 international units a day in long-term hospitalized patients: Insights from a seven year experience
    The test for hydroxy 25 vitamin D is inexpesive and accurate.  At the end of summer, getting normal sunlight you should be around 200 nmol/L.  If I were a betting man, I would say you are around 50 nmol/L or less.
    Low D will cause gastroparesis, not emptying the stomach, which your carrot stick story might indicate.  Worth looking into.
    And yet you improved with reduced gluten diet.  
    Thiamin can be depleted very quickly and can lead to Beriberi,  Wernicke encephalopathy.  The best test, decreased transketolase activity, is not available everywhere.  "observation of a patient's clinical response to thiamine administration remains the easiest, least expensive form of testing, clinicians usually miss the subclinical forms of beriberi. Beriberi (Thiamine Deficiency) Workup
    Thiamin is needed to process carbohydrates.
    There is no good test for choline status.  Most is gotten from eggs, liver, beef. Four eggs have the same amount of choline as 10 cups of cooked brocolli. Choline is needed to process fats.  90% of the Western world does not get even the adequate intake.  It can cause gallbladder issues because the bile is mostly choline salts.  "The mildest and most common symptom of gallbladder disease is intermittent pain called biliary colic. Typically, a patient experiences a steady gripping or gnawing pain in the upper right abdomen near the rib cage, which can be severe and can radiate to the upper back. Some patients with biliary colic experience the pain behind the breastbone. Nausea or vomiting may occur.  Gallbladder Disease"
    In short, supplementing these essential nutrients at a high enough dose to quickly reverse these deficiencies, might ease the pain in a few weeks.
    The bitters might increase your stomach acid, but maybe not so good for you.
    Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination
  13. Thanks
    Beverage
    Beverage reacted to knitty kitty in Please help, mass in the abdomen   
    @Tanja Kocaleva,
    I'm so sorry you are going through this.  
    I believe you may have a deficiency in Thiamine Vitamin B 1.    
    I've had Thiamine deficiency after pregnancy and breast feeding.  Your symptoms sound very familiar. 
    Thiamine is a vitamin, an essential amino acid that we cannot make in our bodies, and so must get from our diets.  Switching to a gluten free diet can diminish sources of Thiamine in our diets.  Most wheat products are enriched with vitamin supplements like Thiamine to replace vitamins lost in milling and processing.  Gluten free processed products are not required to be enriched with vitamins like thiamine.  Now that you are eating gluten free, you probably are not getting enough thiamine from your diet, and due to malabsorption caused by Celiac Disease. 
    Pregnancy and breast feeding demands lots of Thiamine.  The mother's thiamine is given to the baby, leaving the mother depleted.
    Anxiety is a symptom of Thiamine deficiency.  I had the most horrendous anxiety.  I could not settle down nor sleep.  I worried about everything.  Antidepressants did not work because antidepressants lower thiamine levels further.
    Gastroparesis is a symptom of Thiamine deficiency.  Gastroparesis is where food doesn't move through the intestines and colon properly.  Thiamine is needed to make the gastrointestinal tract contract and relax, squishing food through.  I had palpable lumpy spots where foods seemed to move through certain areas more slowly.  These areas included the area just below my ribs (small intestine), the area on the right side (ascending colon), and across the abdomen above the belly button (transverse colon).
    Unintentional weight loss is another symptom of Thiamine deficiency.  The body starts burning muscle and fat when Thiamine is in short supply.  It takes more Thiamine to burn carbohydrates.  A diet high in carbohydrates (rice, corn, etc.) requires more Thiamine.
    Thiamine deficiency affects blood circulation.  My feet were freezing cold all the time.  Peripheral neuropathy (tingling in hands and feet) is another symptom.  Thiamine deficiency also affected my energy level (I was fatigued all the time), my balance, and even how I walked (wider stance for balance).  
    The World Health Organization's field test for Thiamine deficiency is to see if you can rise from a squat without help.  I could not.  
    Ask for an erythrocyte transketolase (ETK) test from your doctor.  This blood tests measures how well your body is utilizing Thiamine.  Blood tests for vitamin deficiencies are not always accurate though, especially if you are already taking vitamin supplements.
    Your doctor should be able to give you an IV of Thiamine (500 mg or more).  Since Thiamine is safe and nontoxic even in high amounts, there is no harm in trying it, if only to rule it out.  
    My doctors did not recognize these subtle symptoms of Thiamine deficiency.  Being a Microbiologist, I put the puzzle pieces together.  I took over the counter Thiamine Hydrochloride supplements.  I had improvement within an hour.  I also began supplementing with Benfotiamine, a form of Thiamine scientifically shown to promote intestinal healing and beneficial for Gastroparesis.  I continue to supplement Thiamine and the seven other B vitamins as they all need each other to function properly.  Magnesium is also needed.  
    Please discuss nutritional deficiencies with your doctor.  
    Do try Thiamine supplementation (500 mg three times a day) if only to rule it out.  Deficiency symptoms should improve within hours to days.  
    Hope my experience will help you with your journey.
  14. Like
    Beverage
    Beverage reacted to Wheatwacked in Pain and/or discomfort   
    Are you eating enough eggs, liver, beef to get enough choline in your diet?  Phosphatidylcholine is needed for bile, produced by the liver and stored in the gallbladder.  It is essential to fat digestion and can affect stool texture and color.
    Supplementing with Phosphatidylcholine works in a few days if it is the problem.
    Thiamine deficiency can cause pain bloating and gas.
     
  15. Like
    Beverage
    Beverage reacted to frankenstein in Not Celiac.....right?   
    "Gastrointestinal Beriberi does occur.  It's not rare.  Doctors have been under diagnosing it. "
    My symptoms do not match it and any condition that has the only place where it shows up on the internet is NIH studies is rare.
  16. Like
    Beverage
    Beverage reacted to trents in Not Celiac.....right?   
    Okay, I'll mention one more thing. No, IMO you have not had a complete battery of tests. IIR, you have not even had a total IGA test done. If total IGA is low, it can drive down scores in individual IGA tests. Here is a summary of all antibody tests that can be done for detecting celiac disease and would comprise a complete celiac panel: 
    knitty kitty knows her stuff. She is medical professional. I would not dismiss her suggestions so lightly. Don't be afraid to think outside the box.
  17. Upvote
    Beverage
    Beverage reacted to patty-maguire in Coeliac screen - did I eat enough gluten?   
    Hi Whaleroad. Welcome to the community!
    Trents answered your question about having eaten enough gluten, however, I wanted to address your comment about not believing you have celiac disease.
    I was there too!  So many people have trouble getting their gp to test them for celiac.  I was the opposite.  After years of mysterious symptoms I was sent for an endoscopy for a different purpose, and the surgeon noticed "inflammation consistent with celiac disease".  When he ordered the celiac blood test I pushed back.  "I don't feel particularly bad when I eat bread or pasta" I said.   I almost didn't go for the test.  
    Well, I did go and I'm here on this forum so you can guess where that led. 
    I happy you're being tested.  Two crumpets per day is probably enough gluten.  If it's negative and you're not confident of the result, another approach is genetic testing.  Celiac disease is a hereditary autoimmune disease and companies like 23andMe test for the related genes.  These tests don't diagnose celiac disease as about 30% of the population have the gene and only about 3% actually develop the condition, but you can use the test to rule out celiac.  I.e. if you don't have the gene you likely don't have celiac. 
    All the best. 
  18. Upvote
    Beverage
    Beverage reacted to knitty kitty in Issues with heat?   
    Blood tests for vitamin levels are not accurate.  They reflect how much of a vitamin has been consumed in the previous twenty-four hours.  Vitamin supplements should be discontinued six to eight weeks prior to blood tests, otherwise the unabsorbed supplements in the bloodstream be measured. 
    Blood tests of vitamins do not reflect how well the vitamins are being utilized inside the cells of organs and tissues.  
    You can have "normal" blood levels and still have vitamin deficiency symptoms.
    A more informative test for Thiamine deficiency is the Erythrocyte Transketolase test which measures how well thiamine is used as an enzyme.
    Vitamin deficiencies occur in malabsorption syndromes like Celiac Disease.  
    There are Eight B vitamins.  They all need each other to function properly.  
    High levels of B12 Cobalamine can mean there's an underlying Folate B 9 deficiency.  The Folate deficiency needs to be corrected.
    Thiamine B 1 deficiency can also affect how other vitamins are utilized by the body.  Thiamine provides energy and creates enzymes with other B Complex vitamins. 
    Pyridoxine B 6 is needed to work with B12 Cobalamine and Folate B 9.  Pyridoxine B 6 deficiency is common in CeD.  
    Riboflavin B 2 needs Thiamine B 1 to make enzymes in order to help other vitamins like B12 Cobalamine and Folate function properly.
    Thiamine needs Niacin B3 to digest our food and turn it into energy. 
    Biotin B 7 and Pantothenic acid B 5 are needed for cell repair and proper functioning.  
    Minerals like magnesium, zinc, potassium and calcium are needed for enzymes to help cells function properly.
    Doctors, out of seven years of medical school, get about twenty-four hours of education in vitamins and nutrition deficiencies.  They are taught nutritional deficiencies happen in starving third world countries.  
    The typical American Diet can produce High Calorie Malnutrition.  If a diet high in carbohydrates is eaten without a corresponding increase in vitamins (especially Thiamine), high calorie malnutrition occurs.  There's sufficient calories consumed, so there's no starving seen, but there are not sufficient vitamins, particularly Thiamine, to turn the carbohydrates into energy for our cells to function properly.
    Hiding in Plain Sight: Modern Thiamine Deficiency
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
    The best way to tell if you have a Thiamine deficiency is to supplement with high doses of Thiamine (500 mg several times a day).  Improvement should be seen within an hour to several days.  I had improvement within an hour of taking Thiamine.  A B Complex supplement should also be taken.  
    The World Health Organization has a field test for Thiamine deficiency.  Can you rise from a squat without assistance?  I could not.  
    My doctors were clueless about vitamin deficiencies, too.  Being a microbiologist, I have done lots of research on vitamin deficiencies in CeD.  Correcting vitamin deficiencies has helped me heal and recover from CeD.
  19. Upvote
    Beverage
    Beverage reacted to knitty kitty in Issues with heat?   
    @Emma R.,
    It IS a vitamin deficiency!  It's Thiamine B 1 deficiency.
    Thiamine deficiency occurs more often in the summer because sunlight (ultraviolet light) is stressful to the body.  More thiamine is required when we're under physical or emotional stress.
    Symptoms of Thiamine deficiency include nausea, and digestive upsets, and fatigue.  
    I felt as limp as a wet rag if I went outside when I had Thiamine deficiency.  I also had deficiencies in the other B vitamins as well.  Celiac malabsorption causes problems for absorbing most nutrients.  
    Photosensitivity occurs with deficiencies in some of the other B vitamins.  Cobalamine B12 deficiency caused splotchy freckle like discoloration on my face and arms and legs.  Niacin B3 deficiency, Pellagra, caused a skin discoloration and blistering, then crusting skin.  Ew!  Bright sunlight can damage the eyes, too, so wear shades.
    Ask your doctor for an Erythrocyte Transketolase test to determine Thiamine utilization.  Discuss supplementation with vitamins and minerals while you are healing.  Doctors can administer Thiamine by IV.  Thiamine (Benfotiamine) supplements can be used for correcting deficiencies, too.  High doses are better to correct Thiamine deficiency (500 - 2000 mg/day).  
    Dr. Lonsdale explains more...
    http://www.hormonesmatter.com/beriberi-the-great-imitator/
     
  20. Upvote
    knitty kitty
    Beverage got a reaction from knitty kitty in Pain Relief   
    I have had good results with B vitamins, similar to @knitty kitty
    I take a good B complex, plus b12 in form Methylcobalamin, and a B1 thiamine in form of benfotiamine. These have all really helped me with energy and especially asthma.
    I have also used flush niacin for improving my energy, I'm 68 and doing really well. I noticed it got rid of the occasional headache, stuffed up sinus, or body aches from working outside all day. The flush action opens up capillaries, which is probably part of why it helps. 
    I used flush niacin after covid too and energy came back faster than anyone else I know. Some of the asthma had returned after covid, I upped the B vitamins for awhile with some improvement, but not as good as I was before covid. I have recently added a 300mg Magnesium, and asthma totally gone now. 
  21. Upvote
    Beverage
    Beverage reacted to trents in Falling off the wagon and losing control of my diet   
    Welcome to the forum, JohnAdam!
    I am so glad you posted this because there has been a lot of discussion lately on the forum about this very topic. Some, like you experienced in your teen years, are "silent" celiacs and believe they can let their guard down now and then to indulge themselves in gluten. Of course, they aren't advocating disregarding their diagnosis altogether to the extent of forsaking the gluten free diet completely. But their casualness concerns me. We do have posters who, like you, seemed to experience celiac remission when young but it always seems to revert at some point and time. I wish you well in your renewed commitment to gluten-free living and pray that you will experience a good measure of healing.
  22. Like
    Beverage
    Beverage reacted to cluelesslycontaminated in NCGS Hives?   
    Thank you for the information and the link! I appreciate your help. I had not thought of NGCS as a possible precursor to celiac disease, but as you said, the gluten free lifestyle is the answer. 
  23. Like
    Beverage
    Beverage reacted to trents in NCGS Hives?   
    The numbers do not suggest celiac disease but the weak positive Antigliadin IgG does suggest gluten sensitivity or NCGS. Although the two gluten disorders have crossover in their symptoms, the difference is that with celiac disease there is an autoimmune reaction when gluten is ingested that causes inflammation in the villous lining of the small bowel. Over time, this inflammation wears down the villi such that there is much less efficiency in the absorption of vitamins and minerals from the food we eat. Over the years, this results in other nutritional deficiency medical problems. NCGS is 10x more common than celiac disease. The antidote for both is the same: lifelong avoidance of gluten. And I think you have already discovered that even occasional exposure to gluten gives you significant distress. Keep in mind, however, that some experts in this field believe that NCGS can be a precursor to developing celiac disease.
    This might be helpful to you in really getting on top of the gluten free lifestyle:
     
  24. Upvote
    knitty kitty
    Beverage got a reaction from knitty kitty in New   
    Yes it's confusing and overwhelming and distressing. But it will get better as you learn. 
    The best advice I was given was by the naturopathic doc that diagnosed me (after decades of mis-diagnosis from traditional docs)..."remember eyes, ears, nose, and throat all lead to the same place."  I'm extremely careful, no gluten in my kitchen, but accidents still happen. The times I have gotten accidentally glutened that drove me nuts to figuring it out was from inhaling (feeding chickens, glue in dust from home remodeling, flour in the air from family having made pies earlier, walking into a bakery, etc.).
    Read through the articles in celiac.com (pull down menu at top), especially gluten-free Diet 101.
    First concentrate on cleaning out your kitchen of obvious gluten food, and donating pans with non-stick, cast iron, wooden spoons, etc.
    Clean stainless cookware really well before using now.  I made sure my dishwasher drain wasn't clogged with anything, and ran all my dishes and cookware through a cycle.
    Look at any hair and body products, make sure all labeled gluten free.
    Pets? Switch them to grain free, always switch pet food gradually, wash hands really well after petting them for now. Wash all their bedding.
    Several people here are very knowledgeable about the typical and not-so-typical nutritional deficiencies connected to celiacs, they are very helpful.  Do a search on common vitamin deficiencies with Celiacs. It's usually not enough to just stop eating gluten and recover, your body needs some help. Get the best quality vitamins you can afford, look for capsules, not hard tablets (I've had much better luck with that anyway).  The forms of each vitamin can make a huge difference.  @KnittyKitty in here is tremendously knowledgeable about that. Many others too.
    One step at a time.  Your world will soon be gluten free and you'll be feeling better.  
    Ask questions here, lots of really knowledgeable and kind people here will help you.  
  25. Upvote
    knitty kitty
    Beverage got a reaction from knitty kitty in Confusing blood tests results   
    Thanks. Recently I was pushed by a naturopath I hadn't gone to before to start taking Folic Acid.  I questioned it at the time, but I went ahead and took it. 
    OMG I felt horrible.  My BP systolic went from 110's-120's up to 140's and diastolic from 60's-70's up to 80's. I felt awful, felt heavy heart pounding, exhausted, irritable, not my sweetie pie self. 
    The worst part was severe insomnia, could not fall asleep until about 4:30am on the worst night.
    Luckily I had not taken it for more than a week, suspected the Folic Acid, but stopped taking every supplement just in case.  BP went back to normal range a few days. I'm gradually adding back my supplements, and so far it's good.  I won't be adding back the Folic Acid.
    I have never been tested for MTHFR, but I have always gotten amped up with caffeine or many B vitamins.  All my B complex and Multi contain methyl forms.  I am now suspecting I have MTHFR.
    Definitely not going back to that naturopath.  
    Thank you, appreciate the information, B.
     
     
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