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GottaSki

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Everything posted by GottaSki

  1. GottaSki
    The reference ranges vary between labs. The range indicates what is normal or negative for the method used to tests the antibodies. If you fall higher than the reference range it is a positive. As long as you have the ref range and result for your antibody tests, you have all the data needed. You cannot compare your result to another lab's reference...
  2. GottaSki
    I had gene testing to help my teens remove gluten. At the time of my diagnosis they each had a list of lifelong symptoms that could be attributed to Celiac, after their negative blood work our Ped dismissed the idea and we weren't sure we wanted to put them through endoscopy. My celiac doc recommended we test me as it may be a piece of the puzzle. Turned...
  3. GottaSki
    Wild Thing -- Jimi Hendrix
  4. GottaSki
    Again, do not assume everything that irritates your system has gluten. You mentioned several different episodes of possible glutening within a very short period of time. Even if there was an accidental gluten ingestion...it happens. Keep a detailed food/symptom log, check with the manufacturer for all foods and drugs you are unsure of.
  5. GottaSki
    Nope...we only started using Gu for long rides and after lunch on full ski days well after dx. I wasn't able to do long rides for about a decade before dx and my long distance running days ended in my early 20s due to symptoms of undiagnosed celiac....energy gels did not exist back when I was a runner. Goodness...that made me sound ancient
  6. GottaSki
    If you have either Celiac Diesease or NCGS...the best food to eat while healing are whole foods: meat, veggies, fruit, rice, dairy (if tolerated). Processed food should be used as treats, not as staples. While healing.....actually a good rule anytime, but especially while healing is eat healthful whole foods and limit the weigh-ins to once per week....
  7. GottaSki
    No worries...make some tea or take a bath...I completely understand the excitement that comes from that "lightbulb" moment. There isn't much to do until your endoscopy. Try to take these next few days to prepare for the changes to your kitchen...this thread is very helpful: https://www.celiac.com/forums/topic/91878-newbie-info-101/ As for numbers...
  8. GottaSki
    You do not need a gluten saturated diet. One or two slices of glutenous bread daily is sufficient until you, your parents and doctors decide if endoscopic biopsy is the next step. If no endoscopy is ordered, then it is time to remove all gluten for at least three months.
  9. GottaSki
    I merged your posts to one thread, one is enough and keeps it a bit easier for members to answer you.
  10. GottaSki
    Be sure to request written or electronic copies of all your tests. If you need help interpreting results, feel free post them here. If all antibody tests are negative and your doctor is not going to order an endoscopy, do remove all gluten for at least three months (six is better). Complete elimination is the only test for Non-Celiac Gluten Sensitivity...
  11. GottaSki
    No apologies ever needed here. Unfortunately, you are not alone. I had many symptoms dismissed or misdiagnosed for over 25 years. Once I was finally diagnosed I can track symptoms all the way back to early childhood. There are way too many folks with similar stories. We understand your frustration. In the five years since I was diagnosed we have...
  12. GottaSki
    Big Eyes -- Cheap Trick
  13. GottaSki
    Either of these may help: https://www.celiac.com/forums/topic/91878-newbie-info-101/ Book: Real Life with Celiac Disease, Authors: Melinda Dennis and Daniel A. Leffler Go easy on Mom...it is a difficult transition for everyone...most family members learn along with us and once they see our health improve become our biggest advocates.
  14. GottaSki
    Shortly after removing gluten...I had issue with the pre-shreaded cheeses...there was NO gluten....I was having a similar reaction to the mold inhibitors/anti-caking ingredients. Perhaps try grating your own? Edited to add...and having a tough time with dairy is common while our digestive system heals...perhaps you are having a tougher time with dairy...
  15. GottaSki
    We use nuts.com too...after many problems with nuts processed on shared equipment.
  16. GottaSki
    Three of us in this family use Gu...but we didn't start until well after dx....I would give it a try towards the end of one of your training runs.
  17. GottaSki
    I understand completely....took me years to become firm and determined with my doctors. Undiagnosed Celiac makes us into strong self-advocates. When you do have doctor appts, I find it helps to bring a written list of all symptoms, questions and tests I want ordered...it helps keep things on the right track during those rushed visits with authoritative...
  18. GottaSki
    I think you can get your ped to order them. Emphasize that because your home will become gluten-free because of your diagnosis, your family will lose the best opportunity to test all of your children. Running both DGPs is important as they will indicate if the child has an issue with gluten that has not yet caused enough mucosal damage for tTG antibodies...
  19. GottaSki
    Welcome! We order pasta, cereal, flours, baking mixes and more from Amazon's Subscribe and Save for a lot less than anywhere I've found in the store. If you have a Sprout's near you...they have a wide variety of gluten-free items.
  20. GottaSki
    It's tough because there are so many variations of "elimination" diets out there....I went with the strictest combo geared towards autoimmune disease which eliminated all high lectin groups: Dairy, Grains, Legumes, Nightshades, Nuts, Seeds and Eggs. I ate meat, fish, veggies and fruit, with the exception of nightshade veggies and fruits I already...
  21. GottaSki
    A children's hospital panel should include them, but it is hard to say for sure. Perhaps call the lab of the hospital and ask which tests are included in their "celiac panel"...just to make sure she is indeed getting them all. I'd hate for her to have to go thru another challenge or even another blood draw if their panel is incomplete.
  22. GottaSki
    I wouldn't blame the salmon quite yet. The things you have removed makes your diet limited, yet the wide variety of things you are eating will make it difficult to pinpoint food intolerance. For instance if your issue is legumes, not just soy....both the peanut butter and edamame would be an issue. If nuts and seeds are the issue...If grains are...
  23. GottaSki
    Hi Amy! She doesn't need to eat a lot of gluten. One slice of glutenous bread per day for this last week of her challenge is sufficient. I have suggested to others on challenge to eat a grilled cheese or cinnamon toast in the evening to help limit reactions during the work/school day...it has helped some, not all. Her severe reaction to this challenge...
  24. GottaSki
    I agree with Cara. Have the endoscopy and remove all gluten to monitor her symptoms regardless of the biopsy results With her Total Serum IgA low, the IgA antibody based panels will likely never be accurate or positive. She should have both tTG-IgG and DGP-IgG now before removing gluten, at three months gluten-free, six mouths gluten-free and then annually...
  25. GottaSki
    There are six of us in my family with Celiac Disease or NCGS and we all have a different combination of symptoms. I'd vote for an endoscopy if you have a GI with training and/or experience with Celiac Disease. Since you've had a complete panel you could opt to remove ALL gluten to monitor symptoms...If you decide to have an endoscopy in the future...
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