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cyclinglady

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cyclinglady

  1. cyclinglady
    Anemia was my only known symptom at the time of my diagnosis. Then three months later I had two vertebrae fractures doing nothing! Osteoporosis! I did not know about the hidden damage that celiac disease can cause.
  2. cyclinglady
    Unfortunately, I just order plain coffee now -- straight from the pot into a clean cup. I have them add soy milk but always ask to see the soy milk carton first. Sometimes, I pack in my own soy milk in my cute cooler "purse." I make nicer coffee blends at home and take them to go in my thermal mugs. I feel safe and save money! I understand your frustration...
  3. cyclinglady
    I get Georgia! I just shipped off the last of them home! It was nice having all my family for Christmas, though! We will be in Georgia this summer as usual. But gluten-free restaurants (offering safe gluten-free food) are scarce in Los Angeles. We drive all the way to Tucson to go to the only 100% gluten-free restaurant we know (at least in the West...
  4. cyclinglady
    Put that jar of coconut oil by the coffee pot and then you will remember to use it! I use refined as i do not like a coconut-tasting coffee. I snack on fresh butter! I kid you not! Plus, I just poured whipping cream into my plain Greek yogurt and had a blob of peanut butter just before that. Like you said, fat really helps! After two years, I am eating...
  5. cyclinglady
    Sorry that you are not able to gain weight. It takes one to three years depending on the extent of your intestinal damage to heal. Six months in? Not enough time. Each glutening can set you back one to three days. celiac disease is not an allergy. It is an autoimmune response and when you get glutened, it can set you back a few weeks. Add them up...
  6. cyclinglady
    Looks like his Ttg was negative, but so was mine and I had severe intestinal damage. I tested positive on only one of the DGP tests. Again, the full panel should be ordered to rule out celiac disease.
  7. cyclinglady

    ARCHIVED New

    cyclinglady replied to williamsb's topic in Coping with Celiac Disease

    Welcome to the club that you never thought you would join! Here are some valuable coping tips located within the "Coping" section of this forum: https://www.celiac.com/forums/topic/91878-newbie-info-101/ Anxiety is a symptom of celiac. Symptoms can come and go making it difficult to diagnose. My symptom was anemia, but looking back, I had some anxiety...
  8. cyclinglady
    I am no doctor, but those appear to be just standard tests (checking for anemia, etc.). Good to have. I could not possibly second guess what you doc is thinking.
  9. cyclinglady
    Nutrition? That is easy. Gluten free grains, veggies, fruit, meat, eggs, fish, all the things you should normally be eating (except for wheat, rye and barley). But...just focus on your upcoming appointment. Get the scan and talk about the celiac blood test with your doctor. I know that you are hurting, but it doesn't make sense worrying about something...
  10. cyclinglady
    Ditto what Karen wrote.
  11. cyclinglady
    I am sorry that you are struggling to maintain a gluten free diet. I know how important it is to fit in (I have a 13 year old daughter and, believe it or not, I was once a teen). I am not going to give you a lecture about it. You probably know the consequences like osteoporosis, anemia, malnutrition which is critical for a growing teen. When is it...
  12. cyclinglady
    I do not know why it was on and off. Attacks were so severe that I always passed out. After waking, I would vomit and then have intestinal pain that lasted for up to 12 hours. I went to many ERs, but no one was able to diagnose me. In the end, I passed out at a company dinner in Las Vegas. By this time, my gallbladder was infected. I had been feeling...
  13. cyclinglady
    Make sure that gallbladder scan is a HIDA. A HIDA scan will check for functionality of the gallbladder. Other tests like an ultrasound will only catch stones. My HIDAa revealed 0% functionality and was infected -- no stones. I had gallbladder pain on and off for 20 years (it would work and then not work) and surgery was my only option. It is a family...
  14. cyclinglady
    .....wait until perimenopause hits....then all bets are off! Seriously, I started sleeping poorly due to hormonal shifts. Waking up to night sweats. I still wake up with a flash, but now it is a feeling of impending doom -- no not doom, but that something is coming and instantly I am roasting. No sweating though. Used to have to change my nightgown...
  15. cyclinglady
    Wow! Glad you kept those old jeans!
  16. cyclinglady
    Like me, she was positive on DG IGA and normal/negative on everything else. The next step should be an endoscopy with biopsies, I would think. I ended up with moderate to severe intestinal damage. How old is she? Kids are often tricky to diagnosis.
  17. cyclinglady
    The 257 was for testing to see if he had an IGA deficiency that would invalidate the celiac tests. He is okay on on that one so the celiac tests should work. The gene test was given, but 30% of the population has those genes and just a few go on to develop celiac disease. The GP should order a complete celiac blood panel per Karen's above link. If...
  18. cyclinglady
    Well....your symptoms during the challenge could be worse, or maybe you just got used to them before. Now they are more pronounced. One reason those of us with celiac disease or NCGI avoid gluten in even the tiniest amounts! Good luck on your challenge!
  19. cyclinglady
    The surface area of the small intestine is about the size of a tennis court. Doctors typically take six to eight wall samples during an endoscopy. A lot could be missed. That is why so many tests (blood, endo/biopsy, gene, diet changes, etc.) are done to help diagnose celiac disease. Minimum and patchy? Could be just the start of celiac disease. ...
  20. cyclinglady
    Based on this study on PubMed, it is possible that you could still celiac disease. Did you have a celiac blood panel? How many biopsies were taken during the endoscopy? Open Original Shared Link Welcome to the forum!
  21. cyclinglady
    You still have the right to obtain actual lab copies. I tested negative on all but one on the complete celiac panel. If my doc had just chosen just two of the most frequently ordered, I would not have been diagnosed. You could go gluten free, but you need to be on the diet for at least six months. Personally, I needed that confirmation to be gluten...
  22. cyclinglady
    Laura, I would recommend contacting your local council and asking which troop near you has opted to sell gluten-free cookies. You may have to leave your number, but someone from that troop will call you back. They can deliver cookies to you! And you might meet a nice Girl Scout who can supply you for life!
  23. cyclinglady
    Can you actually convince him to get copies of his celiac panel? It might not have been a complete one. I tested positive to only one panel component and it was not the test given when they are running the panel on the cheap! I know your frustration, but you can only do so much for him. He is a grown man.
  24. cyclinglady
    If other cheeses do not bother you, then I would suspect a mold allergy.
  25. cyclinglady
    So sorry that you were glutened! Yep. Happened on Delta going for Atanta to London this past summer. Food was marked with a Sharpie "gluten-free " on the foil wrapping but the packaged roll and dessert were clearly labeled from the manufacturer and contained wheat. I pre-ordered gluten free months before for the fun of it. We did not eat it. We...
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