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- knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff9Diagnosed Marsh stage 3C in January 2026
@Known1, I understand you have had your B12, Folate B 9, and Vitamin D level checked. However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently. Results can take a long time to get back, delaying proper treatment and risking permanent... -
- Known1 replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications21Lubriderm-gluten-free?
Thanks, I had already sent you a direct message regarding bananas. Maybe just reply to that? -
- knitty kitty replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications21
Lubriderm-gluten-free?
@Known1, I'm sure you can find a shelter or community service group that would appreciate your lotion donation. I've replied to the topic of your bloodwork as it relates to vitamins in your "Introduce Yourself" post so as not to high jack this thread. Thanks- 1
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- Scott Adams replied to Olenaideole's topic in Gluten-Free Foods, Products, Shopping & Medications18What apps or tech tools help you manage celiac disease?
The comments requested are very limited in scope, and I don't think this shotgun approach would be helpful, but that is just my 2 cents, for what it's worth. -
- Florence Lillian replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease51Supplements for those Diagnosed with Celiac Disease
Hi all: Scott, I am glad you listed all your supplements, etc, many new to Celiac will be floundering as I was when diagnosed in 1979. After much trial and error, the following supplements are now a daily MUST HAVE for me. We have to keep in mind, too much can be just as damaging as too little. Further, I have found that 'brands' of supplements vary...- 1
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By knitty kitty · Posted
@Known1, I understand you have had your B12, Folate B 9, and Vitamin D level checked. However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently. Results can take a long time to get back, delaying proper treatment and risking permanent damage. It's easiest to supplement and look for health improvement. Blood tests can reflect how much of a certain vitamin was consumed in the past twenty-four to forty-eight hours. Vitamins released by digestion is absorbed by villi, anemone like projections that increase the surface area of the small intestine, and then pass into the blood stream for distribution around the body. A Marsh score of 3C indicates severe damage to the villi lining the small intestine. Absorption of nutrients is definitely affected. Blood tests don't reflect the amount of a vitamin that is stored inside cells before being used. You can have "normal" blood levels but have deficiency within cells of organs and tissues. Tissues and organs will relinquish their stored vitamins into the blood stream in order to keep the brain and heart working while tissues and organs are depleted. It's possible to have a localized deficiency of Thiamine B1 in different organs which cause the organ to malfunction. Gastrointestinal Beriberi is caused by Thiamine deficiency in the gastrointestinal tract. Gallbladder dysfunction, thyroid dysfunction, heart attack, and cognitive dysfunction can be caused by Thiamine deficiency. Most of the B vitamins cannot be stored for very long, maybe six weeks. B12 can be stored for as long as a year in the liver. So having "normal" B 12 levels does not mean all your other vitamins are "normal" as well. Thiamine can be stored for eighteen days, however Thiamine can be depleted within three days. We have a greater metabolic demand for Thiamine when we're physically ill, emotionally stressed or are physically active (work out regularly) or work outdoors (or ride bikes). Because most B vitamins can become low within a month or two under the best of circumstances, many newly diagnosed feel great on the gluten free diet at first. After that, they seem to start going downhill. The nutritional deficits start making themselves known. Keep in mind that processed gluten free foods are not enriched nor fortified with vitamins and minerals to replace nutrients lost in processing like their gluten containing counterparts are. You have to replace them yourself by taking supplements at least until the villi regrow and absorption improves. The eight B vitamins are water soluble. They are easily lost if one has diarrhea or constipation or in those with a high Marsh score. Because they are water soluble, the body can easily excrete excess through the kidneys. Recommended Daily Amounts are based on experiments done on humans to find the minimum dose required to prevent disease. Levels for optimal health are much higher. Doctors are trained in medical learning institutions which are funded by pharmaceutical companies. Requirements for nutritional education have been reduced to twenty class hours over the course of the seven years of medical school. Three-day weekend seminars earn ten hours. Vitamins cannot be patented as they are natural substances, so there is more profit for doctors to prescribe pharmaceuticals. They are taught to cover symptoms with pharmaceutical bandaids. They may not look for what caused symptoms to appear in the first place. Doctors are taught nutritional deficiencies don't occur except in impoverished or drought stricken countries. This is not accurate. Nutritional deficiencies can occur if you eat a High Carbohydrate Diet, eat the Standard American Diet, and if you have malabsorption problems as occur with Celiac Disease. You can check out my blog for the challenges I faced due to vitamin deficiencies that went unrecognized by doctors. Talk to your doctor and new dietician about supplementing with vitamins, minerals and essential nutrients while your villi are healing. My favorite Celiac book is The Paleo Approach by Dr. Sarah Ballantyne. She explains the AutoImmune Protocol Diet. It has been shown to reduce inflammation and promote healing in the gastrointestinal tract. Best wishes! -
Thanks, I had already sent you a direct message regarding bananas. Maybe just reply to that?
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By knitty kitty · Posted
@Known1, I'm sure you can find a shelter or community service group that would appreciate your lotion donation. I've replied to the topic of your bloodwork as it relates to vitamins in your "Introduce Yourself" post so as not to high jack this thread. Thanks -
By Scott Adams · Posted
The comments requested are very limited in scope, and I don't think this shotgun approach would be helpful, but that is just my 2 cents, for what it's worth. -
By Florence Lillian · Posted
Hi all: Scott, I am glad you listed all your supplements, etc, many new to Celiac will be floundering as I was when diagnosed in 1979. After much trial and error, the following supplements are now a daily MUST HAVE for me. We have to keep in mind, too much can be just as damaging as too little. Further, I have found that 'brands' of supplements vary hugely! I tend to go with the newer ones as I find they 'digest' better, and digestion is HUGE with many of us. In hopes my input may help someone through the jungle of supplements: I buy from Amazon. I take Naka Cal/Mag Marine Algae with Vit D. Explanation here re/ Algae: I do not take anything with fish oil. I can't swallow large capsules so I chew them...a bit 'fishy' tasting but not bad. I was using a top brand but one day it tasted like...rotten, strong, yucky fish taste. I switched to Algae, I also have a 'thing' about farmed fish full of anti-biotics but don't get me started on that...I digress. I take extra D3, Celiacs need this.. I get the one from Sports Research, great company in U.S.A. I also take B complex from 'Thorne' as well as extra B12 subliminal, another one Celiacs need. I agree with Scott the need for extra B12 for a clear brain. I also take a Multi vitamin with Zinc- Naka brand. Also, K2 MK7 is a must for Celiac... and finally, I take Omega-3 Algae. I truly hope this helps someone - I know the struggle well. Florence.
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