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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
    Try to get the rest of the panel: EMA and DGP. I am biopsy confirmed, yet I only test positive to the DGP IgA even in follow up testing. My GIs have no explanation (neither does the internet, really). The TTG does not catch all celiacs and some are seronegative. They will never test positive on the blood tests. My own kid has always been underweight...
  2. cyclinglady
    Sounds like you did have a symptom but you did not know it. You were probably malnourished. You might not have been able to digest everything completely. Now as you are healing, you are absorbing every single calorie.
  3. cyclinglady
    Hi Victoria! Consider getting retested for celiac disease provided you are still eating gluten daily. Children of celiacs should be retested every few years even if they have no obvious symptoms. https://www.gluten.org/branchnews/relatives-tested-celiac-disease/ https://www.ncbi.nlm.nih.gov/pubmed/24552206
  4. cyclinglady
    Hi! Celiac disease can develop at any time during your life if you have the genes and the environmental trigger. When were you last tested? Did you get the complete panel? Know that some celiacs are seronegative. Fasting should not impact the tests you mentioned. You do have to be on a full gluten diet (about 1 to 2 slices of bread...
  5. cyclinglady
    I agree with everything Ravenwoodglass has recommended. Please try to get into the GI or Neurologist faster by seeking an earlier appointment. Call daily (if needed) and be polite. I hope it goes well for both of you!
  6. cyclinglady
    Their website states they are made in a dedicated gluten-free facility and are tested to 5 ppm. Perhaps you are reacting to other ingredients? I know my body does not like Xanthan Gum as a binder. Lots of celiacs have soy or lactose intolerance too.
  7. cyclinglady
    I am not sure your current issues are celiac related. I do not have DH, but I would assume that your DH rash would emerge indicating that you have been exposed to gluten. Our fellow members who suffer with DH are comparable to “carnaries in a mine shaft”. They actually can “see” the results of a gluten reaction. I also realize that DH has the ability...
  8. cyclinglady
    How long had you been consuming gluten before these tests? Experts recommend 8 to 12 weeks. https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ So, your test results maybe invalid. ? I am not familiar with all those tests, but I am sure that if you had not consumed enough gluten, your chances of measuring antibodies correctly...
  9. cyclinglady
    I would recommend two different paths. Either follow the Fasano diet for a few months and the remeasure her antibodies or repeat the endoscopy. She may very well have healed. I had very elevated DGP IgA antibodies last year and tried the Fasano diet. I still was having some symptoms and my antibodies were not coming down. I had a repeat endoscopy and...
  10. cyclinglady
    Getting a firm celiac disease diagnosis can be very frustrating. With elevated blood test results and symptoms, chances are you do have celiac disease. My niece was diagnosed with Crohn’s after seeing four different GIs. Her Crohn’s did not present normally. Her damage was beyond the reach of both scopes and her symptoms did not even match the “norma...
  11. cyclinglady
    If I recall, you had several issues going on. At six months, a repeat endoscopy/biopsies revealed some villi healing. Closing in on your one year anniversary, chances are you have had more healing. You also had some kind of gastritis that your doctor told you not to worry about. Was it autoimmune? If so, there is not much you can do to manage it without...
  12. cyclinglady
    What is your definition of gluten free oatmeal? Some celiacs can never tolerate even dedicated (grown in dedicated fields) gluten free oats (vs. mechanically sorted which is controversial).
  13. cyclinglady
    Ferritin (iron stores) levels normal? Anemia ruled out? Were your thyroid antibodies actually tested or just thyroid function (e.g. TSH)? Any follow up testing for celiac disease? This can help rule out if your celiac disease (antibodies decreasing or normal) is actively flaring. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing...
  14. cyclinglady
    When were you diagnosed? It can take up to a year to recover on a gluten free diet (steep learning curve). Has your thyroid been tested? Hashimoto’s Thyroiditis (high thyroid antibodies) is commonly linked with celiac disease.
  15. cyclinglady
    The small intestine does have the ability to heal fast. With celiac disease, it can heal fast or slow based on a person mastering the gluten free diet. Other factors like concurrent illnesses (e.g. SIBO, Gastritis, microscopic Colitis), can impede healing. How fast will you heal? No one knows, so doctors take the best conservative approach. I...
  16. cyclinglady
    Thanks for the review! I am glad you had fun.
  17. cyclinglady
    I was diagnosed with celiac disease (biopsy confirmed) five years ago. My hubby was not so fortunate. He had two doctors recommend a gluten free diet 18 years ago. The diet worked. Does he have celiac disease? We will never know because gluten makes him deathly ill. We like feeling good and being able to work! You can trial the diet. Try sticking...
  18. cyclinglady
    Welcome! Gluten does not linger in your body. It exits within a day or so. However, an immune response after a celiac ingests gluten can trigger symptoms tha t are either swift or delayed. It all depends on how fast your body starts attacking itself. Antibodies once ramped up (flaring) can take weeks or months to calm down. Celiac disease...
  19. cyclinglady
    Welcome. While the TTG tests are very good, they do not catch all celiacs (like me who just tests positive to ONLY the DGP IgA). Not to mention, that some celiacs are seronegative— period. Consider pushing for the complete celiac panel, but know that it requires you (or your mom) to be on a full gluten diet 8 to 12 weeks prior to the blood draw (...
  20. cyclinglady
    If you really want piece of mind and to insure the end product is tested, consider a certified gluten free lipstick like Red Apple or Gabriel.
  21. cyclinglady

    Day 2 of gluten-free

    cyclinglady commented on Ms. A's blog entry in Ms. A's Blog

    Welcome Mrs. A! Since celiac disease is definitely genetic, please consider getting your children tested even if they do not display any symptoms! Yes, some celiacs are asymptomatic! Read our Newbie 101 tips located under the “Coping” section of the forum. Look at how you can remain safe in a shared household and how to avoid getting glutened by ...
  22. cyclinglady

    Day 9 of gluten-free

    cyclinglady commented on Ms. A's blog entry in Ms. A's Blog

    Do you want to feel better faster? Do NOT eat out for the next few months or until all your symptoms have resolved. Eating out and not mastering the gluten free diet (e.g. reading labels) are the main reasons celiacs tend to take a year or longer to heal or bring down their antibodies. Each gluten exposure you have will trigger the immune response triggering...
  23. cyclinglady
    Tessa gave you the complete celiac panel. Get copies of your lab reports to see if you were given the complete panel. If not, now is the time (while you are still eating gluten) to get the rest of the blood panel. You could go gluten free, You would need to go back on gluten for a solid two weeks prior to the endoscopy. Sounds easy? It is not. If you...
  24. cyclinglady
    Ruling out celiac disease would be wise. Otherwise, research Mast Cell Activation Syndrome/Disorder (MCAS). You can have more than one issue going on! It can cause anemia as well (just like celiac disease or Crohn’s, etc.) https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/ https://rarediseases.info.nih.gov/diseases/8...
  25. cyclinglady
    As always, bring some food with you. Do not count on the airlines to provide food for you. Pack some plastic utensils to get you started and be prepared to eat from the market (think picnics). It is a great back up plan.
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