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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
    Hi Maddie! I could be starving and have some apple chips in my purse, but I would never eat them without first washing my hands. You could have been glutened simply from cross contamination. I make my kid wash her hands when she comes home from school or anywhere where she has had gluten exposure. Make me feel better, lowers the risk of cross contamination...
  2. cyclinglady
    Squirming itch is right. I drank a Diet Coke on Saturday during a party and I did not get glutened. It was full of Carmel coloring. There was not any safe party food for me. Diet Coke is not healthy, but at least I looked like I was indulging in something!
  3. cyclinglady
    Congratulations on at least improving! Did they also run a celiac panel to to determine if gluten has caused this? I understand that there area any things that can cause intestinal damage ("What else can cause intestinal damage". University of Chicago celiac website.) This is an interesting subject. From my latest research, it appears that many...
  4. cyclinglady
    Sorry you had a bad experience with this company. I am from the old school that most labs should be ordered by a medical doctor, but so many of our members do not have access to good doctors who are celiac savvy. Just curious. What tests were ordered? Why would your doctor say you would be dead if the test results were correct? What were the results...
  5. cyclinglady
    This posting is ten years old and product formulations may have changed. Best bet is to read the label for gluten-containing ingrediants and/or call the manufacturer. I do not worry about mascara. The odds of me swallowing it are slim and none. I do worry about lotions though. And lipsticks, glosses or lip balms must be gluten free! Welcome to...
  6. cyclinglady
    Any alcohol can be hard on your gut when you are still healing. Two months into the gluten-free diet might not be long enough for you to handle alcohol. I do not think you were glutened. No worries about the about the whiskey, but I would worry about a dirty old bar glass that has been washed and dunked in rinse water by hand. I ask for a glass ran through...
  7. cyclinglady
    Sammy, I have wondered about this too. Here is a link from the University of Chicago about other things that can damage intestinal villi: Okay....celiac.com is not allowing me to paste my link from my iPad. I give up. Just google villi damage and U of Chicago and you will find it. Also, Dr. Fansano (a celiac expert) has been credited for discovering...
  8. cyclinglady
    It just takes one positive, like Squirmingithc said. I would get a second opinion! Personally, I tested positive to only the DGP IGA, yet I had moderate to severe intestinal dmamage. My TTG was negative. Weird, but true. I test the same way on follow-up testing too. That is why good doctors will order the complete panel. Or if they are restricted...
  9. cyclinglady

    ARCHIVED Dating ?

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

    People can be so mean (but you already knew that!). I am sorry that you are feeling so down! Because you are feeling so tired and anxious, I would recommend follow-up celiac testing. You might be getting glutened. It has been just six months since you went gluten free though. You might just need more time. Took me year to feel well. Dating...
  10. cyclinglady
    I am sorry that this is happening to you. Your best bet is to obtain copies of all your lab and biopsy reports and post them here (with ranges). Someone can interpret them. We are not doctors, but can help based on our personal experiences with celiac disease and NCGI.
  11. cyclinglady
    Sorry! I did not have access to the site for the last few days, but I am happy that Gemini offered some great advice! ? You are right, Tory, this is a great site for support.
  12. cyclinglady
    Looks like you are still getting gluten into your diet. ? Do you EVER eat out? Do you read labels ever single time? Are you checking all medications and supplements? Do you contact manufacturers when buying foods that do not contain gluten, but could be prepared on shared lines? Do you eat too many verified gluten free foods (it can add up)? It...
  13. cyclinglady
    Ugh! No mystery at all. Why would your doctor even test you if you have been gluten free? All the celiac tests require you to be consuming gluten daily (slice of bread) for a period of 8 to 12 weeks. By your going gluten free, you antibodies have most likely been reduced. Check out the University of Chicago's celiac website for testing requirments. ...
  14. cyclinglady
    Give yourself time to really heal. Be patient. Reduce stress. Hard, I know! Your best bet (I am not doctor) is to eat well (whole foods) and avoid going out to eat. Each glutening can set you back. In my case, months! I had my baby at 39 1/2, I hope it happens for you!
  15. cyclinglady
    Just to clarify, when I said to research more, I just wanted you to find more evidence from credible sources (like the University of Chicago or one of many celiac books by doctors: Murray or Fansano who are experts in celiac disease) to share with your doctors. Your GPA is mis-informed and that happens all the time. Even GI docs make mistakes. celiac...
  16. cyclinglady
    One positive. One. That is all you need on the blood panel. I should know. I personally had just one positive on the DPG IGA too and the rest were all negative. Yet biopsies revealed a Marsh Stage IIIB a which is moderate to severe intestinal villi damage. Intestinal biopsies via endoscopy is usually the next step. Or get a biopsy of the rash BUT there...
  17. cyclinglady
    These are the celiac tests: -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA -total serum IgA and IgG (control test) -AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests -endoscopic...
  18. cyclinglady
    You are six months into then diet, but had a month of feeling good, right? Perhaps you are consuming a hidden source of gluten. Maybe go back to you doctor for a celiac blood panel to check for compliance? I was glutened in July. I can not tell you what glutened me. It was probably one product or one prescription medication that my gluten-free...
  19. cyclinglady
    My new insurance and provider will not even allow my GP/Internist to even order a complete celiac panel. I must go to my GI to do it. Just the nature of saving costs.....I guess (this did not happen with my old provider as our old GP ordered the complete panel based on the way I was tested) Take Cheryl's advice and find a GI who knows or specializes...
  20. cyclinglady
    I completely understand that pain! I always passed out (not so pleasent in front of 17 colleagues in a restaurant) during my "attacks". I just wished that I had known about celiac disease. I might have been able to keep my gallbladder before it rotted. I am thankful for the surgery though. I would have been dead back in the olden days!
  21. cyclinglady
    Hopefully your doctor has told you to consume gluten daily for the scope. If you are gluten free, there is a great chance that they will not find damage and you will be in limbo-land regarding a diagnosis. Please research how to diagnosis celiac disease properly as many doctors get it wrong! The University of Chicago's celiac website is a good place to...
  22. cyclinglady
    A HIDA scan can rule out a non-functioning gallbladder. An ultrasound will look for stones. Non-functioning Gallbladders are a curse in my family! I do not think surgery will be done without the HIDA or evidence of infection based an an ER visit. Mine was removed while I was on a business trip, but that was because the ER doctor knew I had an infection...
  23. cyclinglady
    Great advice has been given. I would like to add that a HIDA scan can rule out a non-functioning gallbladder. An ultrasound can look just for stones. You can just go gluten free without testing. My hubby did that per the poor advice of my allergist and his GP 14 years ago. It worked but we will never know if he has celiac disease. He will be the...
  24. cyclinglady
    Fat bombs. Google them. I make using cream cheese, heavy cream, coconut oil or butter, lemon juice and freeze them in silicon molds. There are lots of flavors and you can sub out those things that make you sick. I make them without sugar 'cause I am diabetic but you can add honey or cane sugar or whatever!
  25. cyclinglady
    Welcome! I am not a doctor, but it looks like you carry the celiac gene. No biggie since 30% of the population has the genes but only a few actually develop celiac disease. Your antibody tests were negative. So, chances are, you do not have celiac disease (but take this advice from a doctor). You could try a gluten-free diet to see of it helps your symptoms...
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