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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
    That EMA is positive and it is specific to celiac disease (unlike the TTG which can be impacted by other autoimmune disorders). Even one positive in the complete celiac panel warrants a referral to a GI. He/she may run the entire panel again and include the DGP (keep eating gluten). I personally tested positive only to the DGP and yet my biopsies revealed...
  2. cyclinglady
    Here's another tip....call the GI's office to see if anyone has cancelled. You might get an earlier appointment. But I am confused. If this is the GI who recently gave you an endoscopy, why can't he order the blood tests prior to your appointment. I understand that you have been gluten free for five days and I know that antibodies can drop fast for some...
  3. cyclinglady
    When I mean document, it means keeping a copy of EVERYTHING (lab tests, notes (take them while you are there), recipes, chart content (that is yours by law)! Write a nice letter with you concerns as to why they are not following the latest algorithm in diagnosing celiac disease. finally, how is your brother? Is he well? Did the gluten-free diet...
  4. cyclinglady
    Okay, so the IGA deficiency test came back normal. That means the IGA tests should work on you. But you had an negative TTG. A zero. Guess what? Me too! I test positive ONLY to the DGP IGA even in follow-up testing. My biopsies showed moderate to severe damage (Marsh Stage IIIB). You need a new doctor. Is your insurance and doctors in one unit? ...
  5. cyclinglady
    The good news is that you have the gluten free diet down. That is half the battle, so your recovery should be much faster than most. Many celiacs commonly have isues with dairy. I did. But with intestinal healing, now I can eat any dairy. You might not really have any dairy issues at all. Everyone is different. I spent 20 years consuming soy. Not...
  6. cyclinglady
    Welcome to the forum!
  7. cyclinglady
    There are over 300 symptoms attributed to celiac disease. The only way to tell is to get tested: Open Original Shared Link i hope you figure it out! ?
  8. cyclinglady
    I agree with Ravenwoodglass. Get copies of your "celiac panel" results. You only need one positive in order to be referred to a GI. My doctor ran the complete panel. I tested positive to only one, yet my biopsies revealed moderate to severe damage. A fluke? No, even in follow up testing, I test positive to only the DGP IGA test. I know you have...
  9. cyclinglady
    From what you posted, it simply sounds like you are not eating enough calories to sustain the weight you want. Going gluten free is not a weight loss diet. It is just leaving out wheat, barley and rye. I think you need to take time to learn to prepare and cook for your busy lifestyle. You might find that your anxiety diminishes when you do not have...
  10. cyclinglady
    You can lead a horse to water, but you can't make him drink. That about sums it up. Honestly, I think you need to stop talking about it. Keep a bin of your stuff. Do not keep it in his kitchen. Eat off paper plates and use plastic ware for a while if it will make you feel better! Re-wash knives or whatever you use before you wash it. Clean your stuff...
  11. cyclinglady
    Hang in there! I admire and respect that you are going through this challenge. Getting a formal diagnosis is difficult. I know that my hubby's been gluten free for 15 years. He refuses to do a challenge because....well, we like paying our bills! LOL! He would be the first to say that I have had way more support with my diagnosis. But in the end, we...
  12. cyclinglady
    Think about it. If you are doing a gluten challenge (and if you have celiac disease), damage to the villi could be occurring leading to the start of malnutrition because you are not able to absorb food and medications (e.g. birth control pills). If you are not absorbing your birth control pill, you're going to get break through bleeding. It's like you...
  13. cyclinglady
    It sounds like your GI is following the normal algorithm for diagnosing celiac disease. If anyone tests positive on a celiac panel (and it only takes one positive out the entire celiac panel), then the recommendation is to go forward with an endoscopy. Some GI's in Europe are skipping this step, but certain criteria must be met. This is not well supported...
  14. cyclinglady
    Here are the tests (see below link). Based on what you posted, I do not think a full celiac panel was ordered. Note that you should have been on a gluten diet (yes, gluten-containing diet) in order for ANY of the celiac tests to be accurate. Had you been gluten free when you had the blood drawn? If so, for how long? Researchers indicate that for the...
  15. cyclinglady
    No, it occurs off and on. I'll notify you ASAP the next time it happens. Thanks!
  16. cyclinglady
    I don't think you are too blunt, Karen. Really, who would approach a medical and lifestyle forum and ask about commercially safe food handling procedures? Nice to ask, but really, are you going to listen to people who have no food product manufacturing experience? Makes a person wonder if you are complying with local, state and federal rules and regulations...
  17. cyclinglady
    Is that TTG IgA result a 5? It looks like you typed the letter "S" to me.
  18. cyclinglady
    Ugh! Get your GI to run a complete celiac panel which includes the DGP IgA. It appears that he's not IgA deficient. But what do your doctors say about his being anemic? There's got to be a reason. Anyway, one positive on the EMA is enough to continue exploring celiac disease. It's pretty specific to celiac disease. Plus, I can tell you that personally...
  19. cyclinglady
    Oh, that's a tough one. I do not recommend the HPV vaccine and that's just advice from a mother. I am not a doctor. My daughter was given a dose and had a seizure on the spot. I hope that there are no long-term ramifications to the vaccine in her case. As far as a lawsuit, I'm not sure you'd be able to pinpoint the vaccine on her celiac disease diagnosis...
  20. cyclinglady
    I have tingly legs and feet. I am not sure when it all started. When I was diagnosed, anemia was my main symptom. I had no tummy issues except when I ingested a food that did not agree with me (e.g. lactose, nuts, garlic -- lactose completely resolved). Luckily, my GI (was in for a routine colonscopy 'cause I'm in the "over 50 club") was savvy enough...
  21. cyclinglady
    No, kids are scoped. Because the celiac antibody tests are much better than in the past, in Europe they are diagnosing kids without scoping them. But, there is certain criteria that must be met. In the U.S.,most doctors still consider biopsies as the "Gold Standard". But, every patient is different. Some are too ill, for the endoscopy, etc. What...
  22. cyclinglady
    I am sorry that you are still sick! Glutenings can really set you back. I was glutened last summer and I don't even know what glutened me. I suspect two products, but I have no proof. I was able to narrow it down because my hubby did not get sick and didn't touch these two products. He is my canary! I will never know, because I am not going to test...
  23. cyclinglady
    It's good to be a little OCD when it comes to protecting your daughter's health! It sounds like you are getting things down! Now, you just need......time. Avoid going out until her nausea is gone. She is a kid though and needs treats. I just baked some gluten-free Snickerdoodles for the family. Yum! I freeze them in little baggies and store them in...
  24. cyclinglady
    Wow! Your test paid off and fast! Now, it sounds like you are doing everything right. You just need time..... to heal. The good news is that she is young and should heal much faster than an older adult. If symptoms continue to bother her, try a whole foods diet. Maybe that popcorn was just a simple case of gluttony! But, let's face it, corn can...
  25. cyclinglady
    There is a celiac center affiliated with UC San Diego: Open Original Shared Link
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