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beachbirdie

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Everything posted by beachbirdie

  1. beachbirdie
    Hi Sarah, and welcome to the forum! You have come to the right place for information and friendly support! Hopefully your doctor will move quickly to get you tested. This forum is full of people who have struggled for YEARS with misdiagnoses before finally figuring out celiac was the cause of their problems. Your short gluten-free trial has already...
  2. beachbirdie
    shadowicewolf gave you good advice. The IgG will be accurate and would be the only way to tell you if you do have celiac, in the possibility of a negative biopsy. You may be non-celiac gluten intolerant, that is a valid condition that would need you to be gluten free. You have it right about "IBS". This forum is FULL of people who were told they had...
  3. beachbirdie
    Welcome to the forum, nosy parker. Your doc should do some more blood testing...you need to get the TtG IgG, Deamidated Gliadin Peptides (IgG and IgA are both usually done even if you are IgA deficient) and you can even get an anti-EMA IgG version but that is uncommon and the doc would have to make a point to order it specially. Your low IgA doesn...
  4. beachbirdie
    Yes, it is normal to have other intolerances (though not everyone has them). Some of them might go away after you have healed. That is why the experienced folks here recommend doing a "whole food" diet for a while, before trying to replace your favorite gluten-y foods with gluten free versions. Soy, corn, dairy are all common contributors to distress...
  5. beachbirdie
    You are a great blessing to your precious mother! I am very happy for you, you have done a wonderful thing for her! Thank you for coming back and sharing this update.
  6. beachbirdie
    It's not as common to be diagnosed with celiac if only the Ttg IgG is positive. Especially with negative biopsy. Your doc is good to have you go gluten free anyway. Did you get a copy of your biopsy report? Do you know how many samples they took? If they took only a small sampling, they might have missed damage. Also, did your doc make sure to...
  7. beachbirdie
    As Gemini said, make sure your daughter gets tested thoroughly for thyroid. This should include the anti-Thyroid Peroxidase (anti-TPO antibodies) and the anti-Thyroglobulin antibodies (TgAb), in addition to the TSH, FREE T3 and FREE T4. Total T4 and Total T3 are useless without the "Frees". Autoimmune liver disease and inflammatory bowel diseases (Crohn...
  8. beachbirdie
    I don't want you to be frightened but since you asked the immunoelectrophoresis is used to look for a number of conditions some of which are more benign than others. Your doc is being more proactive than most, and looking to make sure there is not something serious that might escape notice. Here is a run-down from Open Original Shared Link: Why Is the...
  9. beachbirdie
    I am so glad your mom has made herself available to help you! That is a great comfort!
  10. beachbirdie
    I think "they" say that a slice or two of bread, or a good serving of crackers a day would be sufficient. I know it's crazy to keep yourself sick in order to get answers, but unfortunately that's what it takes! If you have the will to keep to a gluten free diet for life, you could accept the doctor's diagnosis from blood work (a lot of docs won...
  11. beachbirdie
    Please do not stop eating gluten until all your testing is done! If you stop eating before an endoscopy, you will start to heal and they won't see damage. You will then be told you do NOT have celiac when in fact you likely do. Others know more about the endoscopy, but you do need to ask how many samples they plan to take, and negotiate to make sure...
  12. beachbirdie
    I have completely given up grains, and it wasn't until I did so that I started to feel really good. A nice side effect is that I also lost 35 pounds, without any effort or thought whatsoever. On top of that, I am guessing my generalized inflammation has gone way down; I no longer experience the swelling/fluid retention I used to have. I used to wake up...
  13. beachbirdie
    I use a pressure cooker and have for many, many years. One of the best places to read about them and gain confidence, as well as get ideas for many ways to use them is Open Original Shared Link. As for making text links, first type your text in the reply window...then, highlight it by putting the cursor in front of the text and dragging the mouse across...
  14. beachbirdie
    I hope you are recovering well and on your way to getting some good, solid answers!
  15. beachbirdie
    Which TtG is elevated, IgA or IgG? Have the doctors considered inflammatory conditions outside of celiac? Sometimes TtG is reflective of things NOT celiac...it can be elevated in thyroid and liver conditions for example, as well as diseases like Crohn's. Have you tried eliminating dairy? Soy? I would definitely think about going on a GAPS or...
  16. beachbirdie
    Your doc wouldn't test for celiac? Sheesh. There are a LOT of celiacs who do NOT HAVE intestinal symptoms, but they are definitely celiac and definitely suffering from it nutritionally. If your doc is fighting you on the diet changes that are obviously helping your son, I think I might consider changing doctors. You want someone in your corner, not someone...
  17. beachbirdie
    Hope you get sorted out in short order!
  18. beachbirdie
    Well, you could ask for the gliadin antibodies IgG, and you could also beg for the anti-EMA IgG version (yes, there actually IS one!). But, if you are willing and motivated to go with a gluten-free lifestyle, then you could stop here and be non-celiac gluten-intolerant. NCGI is NOT a "lesser stepchild", it is a real condition. And in order to feel well...
  19. beachbirdie
    Yes, it would be worth getting tested for celiac. If my son were autistic, I'd get him tested too. Oh wait...my son is an Aspie...and he does have celiac! You don't need a gastroenterologist, a good family doctor can initiate the testing. What you need is a doctor who understands celiac and is aware of its many presentations, one who knows the full...
  20. beachbirdie
    What city are you close to? I'm in the central Willamette Valley, I like my doctor at Samaritan Heartspring. Their specialty is "integrative medicine", they bring the best of both medical worlds together. They are expensive too, but if you have insurance all the major carriers pay them.
  21. beachbirdie
    Dumb questions. Had you been eating gluten before you got your testing? I know you posted other topics, but I haven't been around for a while and can't remember what I've read! Were you having symptoms? (Edited to answer my own dumb question...) Ahh, yes, I went to find your older posts and see you were eating gluten! Next dumb question...do...
  22. beachbirdie
    TSH is the first-line test they use to see if anything is out of whack with your thyroid. What they should be doing is TSH, Free T3 and Free T4. TSH is a measure of the pituitary hormone that gets secreted for the purpose of telling the thyroid gland to make thyroid hormone. As Takala said, your hormones can swing around quite a bit if you have autoimmune...
  23. beachbirdie
    You won't necessarily have ALL the types of antibodies elevated. The one you DO have elevated is a very good test, the deamidated gliadin peptides. Some docs WILL diagnose on that alone. Lots of celiacs here who test negative on ALL the bloods, but still have positive biopsy, and the other way around. As ravenwoodglass said, you need an endoscopy...
  24. beachbirdie
    Hey learningabouceliac! Thanks for thinking to post an update. I'm so glad to hear you have a definitive answer, and it sounds like you are on your way to healing! Cheers!
  25. beachbirdie
    Would you be able to post the values of your test results, not just whether they were "normal"? I am curious as to why your doctor checked your thyroglobulin...that is generally done when looking at hyperthyroid people. The total T3 value isn't much use either, you need to know what your FREE T3 level is...the unbound hormone is the only one your cells...
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