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- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms12Waiting 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 Tips4Newly 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 & Symptoms12
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... -
- JulieB11 posted a topic in Coping with Celiac Disease0Gluten-Free Drinks
I was introduced to a new-to-me alcoholic beverage yesterday, a grapefruit radler. The bartender said it was sugar- and gluten-free and I trusted him. After I ordered a second drink, I had the good sense to look it up: it’s half beer! Usually wheat beer. BUT it gave me no symptoms—no bloating, fatigue, stool issues. Anyone else have this experience?
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@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!! -
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. -
By knitty kitty · Posted
@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 your tTg IgA numbers with others. Every lab uses their own range values. Tests from different labs are not using the same scale and shouldn't be compared with other people's numbers from a different lab. You've got the Celiac genes and the positive antibody test and the EMA test. Next step is a Gluten Free diet trial and look for improvement. Celiac Disease can be diagnosed using genetic testing and response to a gluten free diet! I'm seronegative, but DQ 2.5. My doctors were clueless. They didn't see any classic textbook damage, so didn't bother to biopsy. Ack! This study followed people who showed no or little damage at first....they accrued more damage. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/ Welcome to the tribe! -
I was introduced to a new-to-me alcoholic beverage yesterday, a grapefruit radler. The bartender said it was sugar- and gluten-free and I trusted him. After I ordered a second drink, I had the good sense to look it up: it’s half beer! Usually wheat beer. BUT it gave me no symptoms—no bloating, fatigue, stool issues. Anyone else have this experience?
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