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brwneyedgrl43

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brwneyedgrl43 Newbie

hey everyone. im 14 years old and have just recently been told i tested positive for having the antibodies related to celiac. im going to get the throat thingy, and lately ive just been really depressed about the whole thing, no matter what i do. 1 weird thing is, ive never had any of the physical symptoms. the only thing is that im tired more than normal, and thats why my brother suggested me gettin my blood tested, to see if im anemic. i was a tiny bit iron-defficient, and i know that thats related to celiac. 2 other people in my family have celiac, my older brother and sister, so im very familiar with the diet and everything. i never really thought of it as a big deal until i realized that i could possibly have this disease, and that it could change the rest of my life. if anyone has any words of encouragement or advice i would love to hear from you! thanks.

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byuiemily Newbie

Hi :) I understand what you must be feeling. My sister Becky was diagnosed before I was, although only by a couple months. When I heard that she had celiac, I felt bad for her, but as soon as you hear that you might have it, your whole outlook on it changes. My words of encouragement are a few things. First off, you are so very lucky to already understand the diet, since you have siblings that are around you that have celiac; you won't be on your own in your family. Just know that if you catch it at this time, before you start feeling a lot of the symptoms, you probably will never have to deal with them, which is a big blessing! It will be hard along the way, but feeling healthy will be well worth it. I wish you the best of luck!

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celiac3270 Collaborator

Hi...welcome to the board. I have had the symptoms of Celiac since first grade, but was only diagnosed 13 weeks ago. At first, for me, it seemed strange changing diet, and all the gluten-free foods didn't seem nearly as good as the normal stuff. You'll quickly become used to it...especially since you have others in your family with celiac disease. I guess there are only three things to mention:

- DON'T CHEAT -- As you already know, to heal your intestines you have to be 100% gluten-free. A nutritionist told me that any amount of gluten larger than your fingernail i n one day can screw up all your progress. It was difficult for me to watch others eat gluten foods that I couldn't have, but knowing how sick it would make me and how much better I felt without it made their food look less and less apetizing. It might be even harder for you than for me because you have NO symptoms. In a way, symptoms are positive cause they warn you if you eat something bad, so you know to stay away from it in the future. Plus, your desire to avoid symptoms outweighs your desire to cheat, so it helps in that respect, as well.

- WHEN IN DOUBT, DON'T -- Pretty straightforward. If you question something, don't eat it. Call the company later, but don't risk it.

- GOOD LUCK-- good luck with the endoscopy (throat thingy) and a quick healing of the intestines.

It may seem life-altering in the beginning (and it is), but it will get better over the weeks. Eventually it will seem so normal that you won't even really have to think when you reach for food to know that it's gluten-free or not. Good luck on the endoscopy.

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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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