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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
    @Simi85 - I am sorry that you are so sensitive. I am not going to dispute with you the odds of getting gluten by vapors (I stand with Kareng), but I will share that I thought I was not healing from celiac disease either. It turns out that I have healed based on a recent repeat endoscopy. That was the good news. The bad news is that I have Chronic Autoimmune...
  2. cyclinglady
    Wow! I think your persistence and research has paid off! Nothing like following a mother’s instincts. Similar things occurred with my niece who actually does have Crohn’s (celiac disease firmly ruled out at this time), which was only discovered with a pill camera by her fourth GI (first three were PED GIs and she literally aged out. Yes, it took years to ...
  3. cyclinglady
    Have you been tested for celiac disease? http://www.cureceliacdisease.org/screening/ Are you taking any medications that could cause a side effect like this? I am sure that experience was frightening. I hope you are able to figure it out.
  4. cyclinglady
    But did you get all the celiac blood tests? I test positive to ONLY the DGP IgA. If my GI had not ordered the complete panel, my diagnosis would have been missed. Then there are about 10% of celiacs who are seronegative. In that case, a biopsy is required.
  5. cyclinglady
    According to this article posted by PosterBoy and published on Celiac.com, A huge percentage of the population most likely has the MTHFR genes (which has not been studied much). Supposedly, if you have the gene or a variation of it, you might not be able to process some vitamins that are found in supplements. The solution would be to get your nutrients...
  6. cyclinglady
    I use the Wal-Mart brand Equate for body sunscreen. It is a chemical sunscreen and had a very high rating per Consumer Reports. I use a non-chemical sunscreen (the white look), like Eucerin or Banana Boat Babies, on my face. If it runs into my eyes on a bike ride, it does not sting. I also add old-fashioned zinc oxide (white) on my nose and cheeks when...
  7. cyclinglady
    These are yummy. We made theses when I was in middle school so long ago and decades before I even knew about celiac disease. I do not flatten them. I roll them into balls after coating them in sugar. Easier to pop right into your mouth! Besides, that was the way my Home Economic teacher taught us. ?. I think it is called culinary now!
  8. cyclinglady
    Going gluten free has actually been cheaper for us. We rarely eat out....rarely. Most of our food is non-processed and naturally gluten free. I buy in bulk, on sale, and freeze. As a celiac with diabetes, I do not eat any gluten-free bread or crackers except on special holidays and I usually reserve those gluten-free carbohydrates for cakes and cookies...
  9. cyclinglady
    My bet is that he would notice. The bread. My kid will do just about anything to avoid gluten-free bread. Now, she will eat gluten-free pasta and homemade cookies or cake. The OP needs to make other arrangements. She is not obligated to care for her parents. I am speaking as a parent and someone who is now starting to help with some elderly family...
  10. cyclinglady
    What is your ferritin level (iron stores)? You have to consume a lot of iron to be toxic. I think it just needs to be stressed that no one should take iron (beyond what is found in a multi-vitamin) without periodic lab tests. Again, it sounds like your doctor is trying to rule out celiac disease or internal bleeding as the cause of your anemia.
  11. cyclinglady
    Was she even tested for celiac disease (the full panel)? A firm diagnosis might be very helpful in filing a 504 plan with her school. I do get your desperation. Little is known about the effects gluten may have on the brain. For example, Gluten ataxia is still not understood well. What is known is that neurological issues can be very slow to heal...
  12. cyclinglady
    I am sorry that you are so anemic. I am also sorry that your doctor may be mis-informed about celiac disease. Exactly what celiac tests were given? For example, the common screening test is the TTG. Great test but it does not catch all celiacs, not to mention that some 10% of celiacs are seronegative. Your PCP, after failing to improve dramatically...
  13. cyclinglady
    What a lovely gesture. I can tell you that I, as a celiac, would never accept a piece of cake made in a shared kitchen from someone who is not well trained in avoiding gluten cross contamination (and that includes my own mother). Your oven, mixer, pans, plastic spatulas are all suspect and can “gluten” a celiac. Consider purchasing a gluten free item for...
  14. cyclinglady
    It only takes one positive on the celiac panel to move forward to obtaining biopsies. Why do some test positive on some or not others? No one really knows. I personally test positive to only the DGP IgA, even in follow up testing yet my biopsies revealed moderate to severe damage. Go figure!
  15. cyclinglady
    Welcome! The gluten free diet has such a steep learning curve! It does take time to master it. Read our Newbie 101 thread under the Coping section of the forum for tips and advice. Consider cutting back on processed gluten-free foods and avoid going out to eat. I do not eat out unless it is at a 100% dedicated gluten free restaurant. Yep, you...
  16. cyclinglady
    Congratulations on the repeat endoscopy and colonoscopy indicating some healing! That is great news. But even the most seasoned celiac can get hidden exposures to gluten (I know I did). It is so frustrating. Consider trying the Fasano gluten-free diet developed for those who are somehow still getting exposure to gluten. http://www.mdpi.com...
  17. cyclinglady
    A primary care physician can order vitamin/mineral deficiency tests and a DEXA scan.
  18. cyclinglady
    What???? I think you need to ditch this current GI and I have no idea how you can deal with the previous GI who only did a visual during the endoscopy and did not take biopsies. These doctors are/we’re NOT following the recommendations issued by the American GI Association. I have healed from celiac disease. My new GI would never have guessed t...
  19. cyclinglady
    My DGP IgA has chronically been elevated despite healing from celiac disease (had repeat intestinal biopsies to confirm healing). However, I was diagnosed with Chronic Autoimmine Gastritis (but that was confirmed based on a stomach biopsy when they were checking my villi). We think this might be affecting my celiac antibodies test results though we can...
  20. cyclinglady
    In the old days, celiac disease was diagnosed via biopsies before they developed the antibodies tests. The blood tests made it much easier to screen for celiac disease, but today they also help to solidify the celiac disease diagnosis. Villi damage can occur from many other things like milk, NSAIDS, or Crohn’s (google it). Before the blood tests, they w...
  21. cyclinglady
    @WTFirth— Could it be the additives or the casing? Was the product old? Did you reach for fresher products located in the back of the deli case? (People take products and ditch them throughout the store, they get warm, and then they can be returned to the case....ugh, I have witnessed this myself!). You can not pay me to eat any sausage or hot dog. ...
  22. cyclinglady
    @Johnny55400- Welcome! Something must be wrong in order for your doctor to order two endoscopies. Perhaps you meant a colonoscopy? That is commonly ordered after age 50 for a colon cancer screening. It was how my celiac disease diagnosis was caught. During my GI consult (to prepare for the colonoscopy), he noticed I had anemia. He ordered...
  23. cyclinglady
    @Wheatwacked — My daughter has been tested for celiac disease (full panel). She has another test ordered to be taken at the end of summer. She consumes no gluten within our home, but she does eat gluten while at school, friends and at restaurants. She does have a high probability of developing celiac disease in the future. Other than Raynaud’s,...
  24. cyclinglady
    That Immunoglobulin A (IgA) result? Is that a “6” or “less than 6”? He had all lots of Immunoglobulin tests, but one one type of celiac disease testing (DGP). You could ask for the rest of the celiac panel (EMA and TTG). Keep in mind that some people are seronegative.
  25. cyclinglady
    Only you can decide what is best for you. If my GI had not ordered the complete panel, my diagnosis would have been missed. Even in follow-up testing, I have never had a positive TTG, yet I had severe intestinal damage. My only symptom was anemia (iron-deficiency). I hope you find the source of your health issues! Best of luck!
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