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Recent Activity
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- knitty kitty replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13Waiting on biopsy after positive bloodwork, but also not really believing this is real
@Alibu, I think you should send the National Institute of Health peer reviewed studies I linked to your doctors. Some doctors don't keep abreast of the recent updates to Celiac diagnosis. They may still be operating under the old idea of waiting until intestinal damage is at a Marsh score of 3C or 4 (complete villus atrophy) before diagnosis of Celiac... -
- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13Waiting on biopsy after positive bloodwork, but also not really believing this is real
@knitty kitty Thank you for your response!! So do you think my doctor might still diagnose celiac even with the negative biopsy? At this point I'm just wondering like do I have to be super careful when I eat places for cross-contamination, or do I just have to eat gluten free and not worry about the damage so much as the symptoms, you know? Like with celiac... -
- knitty kitty replied to Gary Libby's topic in Gluten-Free Recipes & Cooking Tips4
Newly Diagnosed
Welcome to the forum, @Gary Libby! Have you talked to your doctors and nutritionist about checking for nutritional deficiencies and supplementing with vitamins and minerals while you're healing? Malabsorption caused by the inflammation and damage of celiac disease can deplete our stored vitamins, making us feel poorly the majority of the time... -
- knitty kitty replied to terrymouse's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms6
Probably celiac but also confused
@terrymouse, I agree that you may be suffering from nutritional deficiencies already. Get tested for nutritional deficiencies before supplementing, otherwise the vitamins you're taking can mask a deficiency. Symptoms that you have are similar to what I experienced with malabsorption of Celiac Disease. I would lose my appetite; if I did eat,... -
- knitty kitty replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13
Waiting on biopsy after positive bloodwork, but also not really believing this is real
@Alibu, There may not be textbook intestinal damage in the early stage of Celiac Disease!!! Keep in mind that the endoscope used can only reach about a foot past the stomach, while the small intestines are twenty-two feet long! Damage can be patchy or out of reach of the scope. Early celiac disease may not show damage at all. Don't compare...
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By knitty kitty · Posted
@Jmartes71, Please do get checked for nutritional deficiencies. A good B Complex, Vitamin D, Benfotiamine (a form of Thiamine Vitamin B1 that promotes intestinal healing), Vitamin D and magnesium are a good way to start. Correcting nutritional deficiencies with Thiamine supplements (like Benfotiamine), B Complex, and Vitamin D were my miracles. How are you doing? Sending prayers. -
By knitty kitty · Posted
@Alibu, I think you should send the National Institute of Health peer reviewed studies I linked to your doctors. Some doctors don't keep abreast of the recent updates to Celiac diagnosis. They may still be operating under the old idea of waiting until intestinal damage is at a Marsh score of 3C or 4 (complete villus atrophy) before diagnosis of Celiac is made. Better to diagnose before it gets that severe. Much of the damage to the small intestines is microscopic and NOT visible to the naked eye. Since you've got Celiac genes, it would be beneficial if you kept to a strict gluten free diet. Exposure to gluten and an environmental stress (like an infection or physical stress or emotional trauma) are needed for the Celiac genes to become activated. If you don't have active Celiac now, a gluten free diet now will help prevent developing it in future. -
@knitty kitty Thank you for your response!! So do you think my doctor might still diagnose celiac even with the negative biopsy? At this point I'm just wondering like do I have to be super careful when I eat places for cross-contamination, or do I just have to eat gluten free and not worry about the damage so much as the symptoms, you know? Like with celiac I know my body is attacking itself and doing damage (although apparently not haha) and with an intolerance it certainly doesn't feel good, but it's not doing the same kind of damage, you know? I sent a message to the doctor asking if I should do a video capsule endoscopy or if we should have a second opinion on the pathology but ugh, I just want a clear answer so whatever it is, I can move forward!!
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By knitty kitty · Posted
Welcome to the forum, @Gary Libby! Have you talked to your doctors and nutritionist about checking for nutritional deficiencies and supplementing with vitamins and minerals while you're healing? Malabsorption caused by the inflammation and damage of celiac disease can deplete our stored vitamins, making us feel poorly the majority of the time. The B vitamins are needed to digest our food and turn it into energy for our body to function. If we're not able to absorb nutrients from food, taking a B Complex vitamin supplement can help immensely. Do get checked for deficiencies before starting supplements. Ask for an Erythrocyte Transketolace test. Consider folliwing the Autoimmune Protocol diet to help your intestines heal. Benfotiamine, a form of thiamine Vitamin B1, has been scientifically shown to promote intestinal healing. Hope this helps and you feel better soon! Keep us posted on your progress. -
By knitty kitty · Posted
@terrymouse, I agree that you may be suffering from nutritional deficiencies already. Get tested for nutritional deficiencies before supplementing, otherwise the vitamins you're taking can mask a deficiency. Symptoms that you have are similar to what I experienced with malabsorption of Celiac Disease. I would lose my appetite; if I did eat, I got full quickly, and had nausea, dizziness, trouble digesting fats, abdominal pain, and heart palpitations. I had unintentional weight loss. I also had my gallbladder removed. I was deficient in the essential nutrients, especially Thiamine and the other B vitamins. Ask for an Erythrocyte Transketolace test. Thiamine deficiency symptoms may appear first because our body can't store it for more than three weeks and our metabolic needs for Thiamine increase when we're physically sick or emotionally stressed, so we can become depleted quickly. Thiamine deficiency symptoms include gallbladder problems and all the ones list above. Thiamine and the other B vitamins are needed to digest our food and turn it into energy for our body to function. Gastrointestinal Beriberi is frequently overlooked by doctors. Ask for a DNA test to check for any known genes for Celiac Disease. You have to have at least one gene for celiac disease to develop. You don't have to be eating gluten for a DNA test. Your genes don't change. If you don't have any celiac disease genes, you can focus on other reasons for your illness. If you do have celiac disease genes, with your positive blood test results, you, your doctors and nutritionist can focus on correcting nutritional deficiencies which will help you heal and feel better.
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