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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
    Celiac Disease is NOT an allergy. It is not over in a manner of a few hours or a day. It is a autoimmune disorder (like Multiple Sclerosis or Lupus) that has a known trigger -- gluten. People with MS can have flare-ups (or it can be constant). My MIL had MS. Every Spring, like clockwork, she would become paralyzed for six weeks for no known reason...
  2. cyclinglady
    Just make sure you are consuming gluten daily for 8 to 12 weeks, prior to any celiac antibody testing.
  3. cyclinglady
    So glad to hear from you! It is inspiring to know that you CAN get well!
  4. cyclinglady
    Your small intestine is long! You could have some severe damage in sections, but some nutrients may still get through. I would take the Vitamin D. When I was first diagnosed, I was very anemic. My iron stores were practically nil. I took iron supplements for a few months until I saw an upward trend. That's what your doctor might be looking for. A little...
  5. cyclinglady
    I am not a thyroid expert, but your TSH seems pretty stable. It would be nice to have an entire panel done to rule out autoimmune thyroiditis, but I suppose that depends on your symptoms. When hyper, I was unable to sleep, nervous, weak muscles, muscles surrounding my eyes hurting, shakey. When hypo, I needed lots of coffee and an afternoon nap. I was...
  6. cyclinglady
    My home is gluten free (for both me and hubby). We went really gluten free after my diagnosis as two vs. one won out. My 15 year old has taken gluten in her lunch daily (here's a frozen croissant -- make your own sandwich when you get to school). I had her tested (antibodies) a year after my diagnosis. She was not displaying any symptoms -- nor was she...
  7. cyclinglady
    Since you are consuming gluten, why not participate in a new celiac disease drug study? This is weird, but I just received this in my inbox today! Open Original Shared Link A Pill to Treat Celiac Disease? Now enrolling patients to a clinical study! WHO...
  8. cyclinglady
    Why not just search "lymphoma" within the forum. Contact other members who were diagnosed with lymphoma from untreated celiac disease.
  9. cyclinglady
    Albert, welcome! This is a very old posting from 2008. If you'd like to get input from someone who is currently on celiac.com and are having issues with dapsone/floaters/eye pain, I would recommend posting under another section like "Coping" etc.
  10. cyclinglady
    Oh, I would be happy with those TSH results, but those do not tell the entire story......
  11. cyclinglady
    Ugh! You have Kaiser? (Guessing from your cut and paste from their website.) Your PCP is only authorized to order the TTG tests. Only an GI can order the complete panel (this is all about reducing their expenses, but I can not blame them when so many patients abuse the system). Can you ask for a GI referral? Or did I get this right...you have new insurance...
  12. cyclinglady
    Ah! I get it. I hope that you find some answers! I wish you well.
  13. cyclinglady
    You might want to consider getting a second opinion from a celiac savvy GI because your GI is not following diagnostic guidelines as recommended by the American GI Association. Geez, he is putting you out for the colonoscopy. It makes sense to do both at the same time. I bet your insurance will not pay for the endoscopy without a positive celiac blood...
  14. cyclinglady
    Welcome! I am sorry that you are so sick! These are the tests needed: Open Original Shared Link I think you'll be okay after being gluten free for only two weeks. Usually, you need to be consuming gluten daily for 8 to 12 weeks. Make sure you are getting an endoscopy (mouth) and not just a colonoscopy. The endoscopy is required for a...
  15. cyclinglady
    Good luck! Soon you will be on your way to recovery! Think of me when you drink that beer. In the past three years, I have purchased gluten-free beer three times and have literally gagged on it. I poured the rest out as no one else was willing to drink it. Hard cider was horrible too. So, I stick with wine. I love red, but it causes inflammation...
  16. cyclinglady
    My next hospitalization? A big sign over my bed informing all staff that unless I am coding, not to treat me unless they take my medical insurance. Internet access to verify all procedures and medications (risk vs. benefit). A phone to call my cousin who is Director of Nursing out of state and can help me advocate for my rights! (Last time she interviewed...
  17. cyclinglady
    Wow! You have been through diagnostic hell! I am not a doctor, but I do not think that pain medication would impact your celiac disease results. You are right that as little as two weeks can change the outcome of celiac disease antibodies testing. So, are you just going to assume you have celiac disease? Obviously, the gluten-free diet helped...
  18. cyclinglady
    Sounds like you are getting plenty of carbs in your diet via fruit and veggies. What is lacking is protein and healthy fats. Are you vegan? If not fish, meats, eggs and fats like avocado, olive oil, coconut oil, butter, etc should be include in your diet. Can you do dairy? Cook and prepare meals on the weekends. Freeze meals so that you can defrost...
  19. cyclinglady
    Yes, you could have celiac disease. Anyone could. Yes, you can go gluten free and we are here to help. BUT I think you should make sure that in all that testing did they actually test for celiac disease? Going gluten-free is hard and it is bit easier if you have a diagnosis. Get copies of your tests. If your doctors just gave you a TTG IGA ...
  20. cyclinglady
    I am not a genetic expert and I have personally never had the test as antibody and biopsy testing determined my celiac disease diagnosis. I do know from my research that about 40% of the population has the genes to develop celiac disease but only a tiny fraction actually goes on to develop it. It is usually used to exclude celiac disease not to diagnose...
  21. cyclinglady
    Exactly what celiac antibody testing was done? If only the TTG IGA and an Iga deficiency test were done, you could ask for the entire panel. The TTG IGA screening is good but does NOT catch all celiacs. To answer your questions: 1) only you can decide if you want to get tested. I personally needed it because I just had anemia and no intestinal...
  22. cyclinglady
    Well the results seem to be negative. Your doctor spent money to see if you have the genes, but that test is used to rule out celiac disease. It did not rule it out! Some 40% of the population has the genes but only a tiny fraction go on to develop it. But do you have it? Your doctor should have spent the extra money on a full celiac antibodies panel...
  23. cyclinglady
    I am not even going to scold you about allowing gluten into your diet. You already know that gluten makes you sick. What you do not think about when you are 20 are the long-term ramifications. You know, osteoporosis, cancer, acquiring additonal autoimmune disorders, etc. What? I think I was scolding you! Usually, green stool is a sign of food moving...
  24. cyclinglady
    I am sorry that you are not well! I had rib and hip pain. Turns out it was oteoporosis due to celiac disease. It has resolved now that I am absorbing nutrients better by being gluten free. Here are the tests that you can share with your doctor. Open Original Shared Link Open Original Shared Link If possible get the complete panel as...
  25. cyclinglady
    But it can be gluten. You said that you were Glutened the week before you started to feel really bad. Gluten triggers an autoimmune response that can last for days, weeks or months. I was glutened last July. Symptoms were severe. Vomiting, ab pain, the works (was only anemic and no tummy issues when I was first diagnosed). Six weeks later, my GI tested...
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