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    1. - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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    3. - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Confused with test results


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    • trents
      Only if symptoms occur? But what if your son is a silent celiac? And let him eat once in a while? How often is once in a while? And if only very occasionally, what is the benefit of it from a carb standpoint? There is some inconsistency here. And if more often than occasionally, it will do damage to his small bowel lining that will eventually cause health deterioration. And it is also true that once you begin to withdraw gluten you become more sensitive to gluten exposure when it happens and it can even make you quite ill, like nausea and vomiting. You lose tolerance for it.  I don't think any of the leaders on this forum who have lived with celiac disease for years and learned about it for years would advice occasional indulgence in gluten for anyone who has celiac disease.  Just some things for you to think about but I think you will do what you want to do.
    • Dhruv
      @trents I really appreciate your valuable feedback, absolutabsolutely's health is my utmost priority as a parent and i will do whatever it will take me to, i m not in denial mode at all, i m just not getting that why doctor has no answers of my questions.  Doctors here behind me to do endoscopy to confirm,  if it's very high than normal then why they are behind me to test. Even his physician here said let him eat once in a while, and will respect him only if symptoms occur. So whole process has made me upset. But will keep your feedback in mind. Thank you very much.
    • trents
      For a person with celiac disease, every time wheat is consumed it generates inflammation in the lining of the small intestine. This is not just an irritation reaction like a hot spice might produce, it is an autoimmune reaction where the body is attacking its own tissues. If this happens frequently over time it will trash the villous lining of his small bowel and inhibit his ability to absorb nutrients from his food since that is the portion of the intestinal track where all the nutrition from the food we eat is absorbed. Carbs can be had easily apart from wheat or rice. Potatoes for instance or any grain like corn or sorghum.  It is not always true that everything in small quantity is good for your health. What is true is that there are some things that are harmful in any quantity for some people. Yes, it is hard to believe that something considered to be a staple by most people groups around the world can be harmful. That has always been the resistance the celiac community has faced in getting people to accept the fact then when you have celiac disease you must absolutely avoid wheat, barley and rye. Many people are cynical, even still some doctors, and see gluten intolerance as the latest "fad" disease.  Your son's ttg(IGA) score is greater than 100 when normal cut off is 3. I do not understand how your physician in India can dismiss that. This particular antibody is very specific for celiac disease and would not be elevated due to Epstein Barr virus. This will likely offend you but I believe you are in denial about the fact that your son has celiac disease. Having this disorder just does not fit in with either his plans for his life or your plans for his life as his parent. But is anything more important than guarding your son's health?
    • knitty kitty
      Y'all may want to get tested for POTS (Postural Orthostatic Tachycardia Syndrome) which can cause fainting, and Gastrointestinal Beriberi, which manifests with vomiting, abdominal pain, diarrhea, fever, chills, and low blood pressure. POTS and Gastrointestinal Beriberi are Thiamine Deficiency Disorders.  Celiac Disease causes malabsorption which results in malnutrition.  Malabsorption affects all the essential vitamins and minerals.  Thiamine, in conjunction with the other B vitamins, makes life sustaining enzymes which enable our body to function.  Gluten free diets can be low in essential B vitamins, especially Thiamine Vitamin B1.  Gluten free processed foods are not required to be enriched with vitamins like gluten containing products.  We need additional extra Thiamine when we consume a high carbohydrate diet.  Consistently eating lots of empty carbohydrates (like gluten free processed foods) can precipitate Thiamine Deficiency Disorders because Thiamine is necessary to turn carbohydrates into energy for the body.  We have an increased demand for Thiamine when we are physically ill, emotionally stressed and physically active, especially in hot weather.  Thiamine cannot be stored in the body longer than three weeks, so deficiency symptoms can appear in as little as three days.  Early symptoms which are vague, include fatigue, depression, irritability, anxiety and malaise.  Symptoms can wax and wane depending on how much Thiamine we consume in our daily diet.  A twenty percent increase of dietary thiamine causes an eighty percent increase in brain function.  The brain, just sitting and worrying, uses as much Thiamine as muscles do while running a marathon.  The cerebellum and the Vagus nerve, which controls blood pressure, digestion, heart rate, also use LOTS of Thiamine.   I limped along for years with a subclinical thiamine deficiency, while suffering from bouts of Gastrointestinal Beriberi and POTS.  My doctors never connected any of my health problems to nutritional deficiencies.  It's just not on their radar.  I studied nutrition before earning a degree in microbiology.  I was curious what vitamins did inside the cells of the body.  I thought "it couldn't be that easy."  Though doubtful, I started supplementing with high dose Thiamine, and had improvement within an hour!  Occam's Razor:  sometimes it's the simplest things.  Thiamine is safe and nontoxic even in high doses.  The B vitamins work together, so I took a B Complex.  The B vitamins are water soluble and easily excreted if not needed.  No harm, no foul to try.    Do talk to your doctor and nutritionist about supplementing with essential vitamins and minerals.  Testing for nutritional deficiencies (though not accurate measurements of deficiencies) should be done before beginning supplementing otherwise you're just measuring the vitamins you ate.  You can have vitamin deficiency symptoms before there are changes in blood levels.   Anemia can be helped by supplementing copper, thiamine and the other B vitamins like B12, as well as iron.   Migraines are improved with Riboflavin Vitamin B 2.  I used to have severe three day long migraines, but Riboflavin made them go away.     Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/
    • Dhruv
      @trentsvery well said. But in india we mostly use pure form of wheat,  like wheat flour or Samoline than refined all purpospurpose Flour, which is very unhealthy. Over the period since atmosphere changes, globe warming definitely affecting whole farming concepts. I m not worried about how my child go off on wheat but why he can't eat once in a while his favorite food? I m also worried to take him completely off from wheat as that may make him more sensitive and cause any other diseases. No doctor has answer of my questions. How many people in this country or india suffer from more dangerous stomach diseases? If you see nothing is good for our body, drinking alcohol, medicines, smoking,  spicy food, green chilli, still we eat, and specially in India,  we eat a lot of spice everyday, our internal body organs had made that way, that's not the case anywhere else in the world we have more than 261 states if india , each state/city has different food, use different ingredients, ultimately it's human body, but it's the way how you develop your body and for which food. Cutting off on staple good is not a good idea, definitely we can decrease the quantity,  if i put my son only on rice, he may get sugar, that means one or other problem. How he can get his energy without eating carbs. I believe everything in small quantity is good for your health. Overdue or stopping can make more complications. When I send my sons reports to india , doctor said he is just above normal,  and don't think about it as if you eat wheat,  you will come positive for this test. I m just gathering opinions to make best decision. We asked him to keep a balance, once in while eating will never be harmful! 
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