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Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.
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Recent Activity
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- knitty kitty replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease74 Years and very little progress
@maylynn, No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide). My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies. I studied nutrition before earning a degree in Microbiology because... -
- maylynn replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease74 Years and very little progress
@knitty kitty Did they give you medication for the Thiamine? I have never heard of that and have never related to symptoms more. My energy is always SO low. Zero drive to get anything done or work out. I used to love being on the go and being active. I am heading to the doctor next week so I will make sure to bring this up! Thank you so much!- 1
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- maylynn replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7
4 Years and very little progress
@trents I have had another scope done since being diagnosed. The only thing they told me at that time was my body seems to be healing very well and to continue what I was doing. At that time, I had only been diagnosed 2 years so it may be a possibility that it was healing then but not now maybe. I think you're right that it's about time one was done! I will... -
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- knitty kitty replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7
4 Years and very little progress
Welcome to the forum, @maylynn, I had similar symptoms. I was anemic, lost a lot of weight, felt full after three bites. I was deficient in vitamins and minerals, especially Thiamine B1. Thiamine converts our food to energy so our body can function properly. While deficient in thiamine, the appetite can disappear (not enough thiamine to digest...
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By knitty kitty · Posted
@maylynn, No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide). My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies. I studied nutrition before earning a degree in Microbiology because I wanted to know what vitamins were doing inside the body. My doctors just prescribed pharmaceuticals to cover the symptoms of poor health due to malabsorption of nutrients. We need more thiamine when we're physically ill, physically active, emotionally stressed and work outside in hot weather. Thiamine works in concert with the other B vitamins, so all should be supplemented together. Vitamin D needs to be activated by thiamine. Vitamin D helps regulate the immune system. Don't take Thiamine Mononitrate because it is not bioavailable. The body has difficulty absorbing and utilizing it. Do keep us posted on your progress! -
@knitty kitty Did they give you medication for the Thiamine? I have never heard of that and have never related to symptoms more. My energy is always SO low. Zero drive to get anything done or work out. I used to love being on the go and being active. I am heading to the doctor next week so I will make sure to bring this up! Thank you so much!
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@trents I have had another scope done since being diagnosed. The only thing they told me at that time was my body seems to be healing very well and to continue what I was doing. At that time, I had only been diagnosed 2 years so it may be a possibility that it was healing then but not now maybe. I think you're right that it's about time one was done! I will be bringing that up to my doctor at my apt. next week. Thank you for the suggestions with food. I have tried diary so far. Seems to not be the issue (luckily!). Will have to try the others!
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By knitty kitty · Posted
Welcome to the forum, @maylynn, I had similar symptoms. I was anemic, lost a lot of weight, felt full after three bites. I was deficient in vitamins and minerals, especially Thiamine B1. Thiamine converts our food to energy so our body can function properly. While deficient in thiamine, the appetite can disappear (not enough thiamine to digest food) or can become ravenous (the body trying to replete vitamins). I lost a lot of weight. In thiamine insufficiency, the body burns fat and muscle, so weight loss. It takes less thiamine to burn fat and muscle than it takes to burn carbohydrates. Thiamine is needed to make new blood cells. Thiamine is needed by red blood cells to carry oxygen. Thiamine helps with fatigue and anemia. Malabsorption of Celiac Disease affects all eight water soluble B vitamins, vitamin c, and the four fat soluble vitamins. Supplementing while healing after diagnosis is beneficial. Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals.
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