• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

cyclinglady

Moderators
  • Content count

    5,385
  • Joined

  • Last visited

  • Days Won

    149

cyclinglady last won the day on July 18

cyclinglady had the most liked content!

Community Reputation

670 Excellent

About cyclinglady

  • Rank
    Advanced Community Member

Profile Information

  • Gender
    Female
  • Interests
    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

Recent Profile Visitors

18,263 profile views
  1. Celiac disease is not diagnosed by symptoms alone. Why? There are over 300 of them and many, if not all, overlap with other autoimmune issues or other illnesses. Learn more about proper testing: http://www.cureceliacdisease.org/screening/ I am formally diagnosed. My hubby is not. His mis-informed doctors told him 16 years ago to give up gluten. It worked, but now we do not really know if he has celiac disease or not. He will be the first to say that I get WAY more support from family, friends and medical. I am sorry at your doctor gave you the wrong advice. Now, you must decide if testing is worth pursuing. I wish you well.
  2. While you could very well be vitamin/mineral deficient, you could also have issues with your thyroid. Autoimmune thyroid is common with .......autoimmune celiac disease. Your doctor should order a full thyroid panel, including thyroid antibodies. Your blood sugar should also be checked (autoimmune diabetes). I am not saying you have these issues, but these AI issues are common with celiac disease. In fact, you can develop or have more than one AI issue. If I feel a very strong need to nap, I know my thyroid is off and my doctor should be notified. A simple blood test usually verifies that an adjustment to my thyroid replacement is needed. That said, you are in the healing stages of celiac disease. Eat healthy and include plenty of fats to keep you satiated. Try to avoid processed foods. Make sure that gluten-free diet is varied and full of veggies. Get plenty of rest. Just listen to your body. Soon you will feel much better.
  3. Why not give up supplements for a while? Not everyone is deficient in vitamins and minerals -- or at least dangerously so. Ask your doctor to check. I take no supplements. My doctor runs a vitamin panel at my yearly check-up. I do make sure my diet is healthy and varied -- like eating veggies even at breakfast! People who are gluten free and eat junk food will probably need supplements. Look to your diet, lotions, shampoo....anything you can swallow to see if you are getting gluten into your diet. That is most likely the cause of your recent symptoms. At least rule out that you are having a celiac flare-up.
  4. Most of the articles you presented were blogs. They focused in one article pushed by the American Chemical Society. The research looked at ground coffee in Brazil ONLY. https://www.acs.org/content/acs/en/pressroom/newsreleases/2014/august/keeping-filler-ingredients-out-of-your-cup-of-coffee.html We know that Brazil is a very poor country. Just look at what happened during the last Olympics. For piece of mind, do not drink ground coffee brands from Brazil. Instead, grind your own beans or purchase grounds from a reputable company.
  5. Okay, a positive on thyroid antibodies, but what about the rest of the thyroid panel? That tells more of the story. Is rest of the thyroid panel all in the normal ranges? Is that why you were recommended to take a supplement instead of actual thyroid hormone replacement? Many doctors try a tiny dose of thyroid hormone replacement. Was this considered? Symptoms besides gray hair? You can either embrace the gray hair or color it. My research and personal experience has never come across a method of reversing grey hair. My SIL grayed at 18. She has been coloring her hair black for decades and her thyroid is normal.
  6. You are normal! All the things you are going through are normal for someone with celiac disease....probably with any life changing illness. What you need is patience. Most here take a year to heal or longer due to setbacks on the diet or healing from systemic damage. The nervous system seems to take the longest. Ask your doctor to check you for any deficiencies. No sense guessing what you might need. It is a common and recommended practice to check for vitamin and mineral deficiencies. http://www.cureceliacdisease.org/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis/ Once healed, you might not need any supplements, if you eat a wide and varied healthy diet.
  7. Yes! Ask for the IgA deficiency test! Why? Well, your doctor did not even follow protocol. In order to validate the IgA celiac tests, he should have determined if you are IgA deficient or not. http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf I have never tested positive on the IgG tests and only had one positive on the IgA DGP test, but I was not IgA deficient, so my GI knew that my test was valid and I needed an endoscopy to confirm my diagnosis. You do not know if any of your tests are valid. You need the IgA test. It is a control test only in the case of diagnosing celiac disease. But....some celiacs are low in IgA and that seems to happen more often in celiacs than the general population. https://www.theatlantic.com/entertainment/archive/2017/07/dunkirk-is-a-stunningly-spare-survival-film/534252/
  8. Almost EVERY single celiac expert in the world and/or groups like the U.K./U.S. Gastroenterologist Associations recommend obtaining biopsies for diagnosing celiac disease. There are some exceptions. If you are too ill to even risk an endoscopy, your celiac panel is extremely high on several of the celiac tests (this is still debatable), you have long wait times in getting the endoscopy (government health wait times) or you can not afford to get one are all acceptable. You know your situation and will have to determine what is best based on your doctor's input. The blood tests are not 100% accurate. Heck, I tested positive only to a really odd one (the DGP IGA). I had no noticeable symptoms. I chose the endoscopy. I never wanted to doubt my diagnosis as my hubby went Gluten Free some 16 years ago based on the poor advice of two medical doctors. He got well, but does he really have celiac disease? He would be the first to say that I have had way more support from family, friends and medical, yes, medical. I hope this helps. Best to research like you are doing so that you feel comfortable and committed.
  9. Yes, I would ask for the rest of the celiac panel (including the IgA deficiency test). Discuss this with your child's GI. He/She may be able to order for you. Share the CBC results too with him/her. I would want to know for sure before giving up gluten to support my child, but you need to determine what is best for you!
  10. I am sorry too. I did not mean to imply that you have a sugar issue (though it may contribute to our obesity problem, but that is another debate). I do not think that is the cause of your symptoms. I brought it up because the American Academy of Pediatrics just issued this on juice for infants, toddlers and adolescents: http://pediatrics.aappublications.org/content/early/2017/05/18/peds.2017-0967 We all have unique intolerances. My kid can not drink orange juice beyond a 1/2 cup. That is about the equivalent of two oranges. Too much juice and she gets an allergic reaction -- itchy hives all over her body. Yet, she can eat two oranges in her lunch everyday -- just not a full cup of orange juice, processed or fresh. Me? I tolerate it just fine, if only I could tolerate garlic!!!!!! i hope you feel better soon.
  11. Welcome! It looks like you are on the right path. Now, you just need to be patient (believe me, it is hard to be patient). I choose not to supplement. Instead, I insure that my diet is varied and full of good nutritients. I am not deficient in anything per my doctor. Everyone has to determine their needs because we each come with a list of collateral damage that can extend beyond the gut. Hang in there! 😊
  12. What you can do is get follow-up testing. This might help in determining if you are gluten-free diet compliant. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  13. Think about this. I have only had my daughter tested for celiac disease. She tested negative. She will need to be retested sometime in the future or when symptoms develop. But genetic testing? This might impact her insurability in terms of health and life. I do not have the answers, but I would research this before having everyone tested. Some 40% of the population carries the genes to develop celiac disease. Only a very few actually develop it. Insurance companies will deny you for all kinds of lame reasons. Just be careful.
  14. We rarely drink orange juice. Why? Because it is full of fructose which is not bad, but you would probably never sit down and eat more than 2 oranges in one sitting. Makes you wonder why diabetes is so prevalent. The other reason is laziness. I have citrus trees and juicing them takes time and work. I reserve that for special occasions. Citrus is acidic. It can be harsh on a damaged gut. My non-celiac kid actually gets hives from eating too many oranges. Moderation can be a good thing. Consider getting your vitamin C by eating fruit and not juice.