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beachbirdie

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Latest Celiac Disease News & Research:

Everything posted by beachbirdie

  1. beachbirdie
    I don't have the citations yet, but my DIL recently shared with me that she saw some studies pointing not to gut damage from non-gluten grains, but pointing to some evidence that grains like rice, corn, and others have enough similarity to gluten that they fool receptors and cause an increase in the body's autoimmune responses. She's out of town right now...
  2. beachbirdie
    What Kareng said. If you do have celiac, you are damaging yourself. You spoke of your joint pain, but did not elaborate your digestive symptoms. What digestive symptoms have you seen improve on a gluten-light diet? If you wanted to get tested for an "official" diagnosis, you'd have to go back to eating a little more gluten than you are. If you need...
  3. beachbirdie
    My dad first, and now my mom are both dead because of these failures. Turns out my mom had not just ONE (multiple myeloma) but TWO (along with severe myelodysplasia) very rare disorders, and on top of that I'm still trying to get the labs out of her doc that will at least tell me her celiac genetics...she may have had celiac as well, judging from her symptoms...
  4. beachbirdie
    Ask them to test your Free T3. If your lab uses ranges like my lab, your Free T4 is on the lowish end. I can't function if my TSH is as high as yours though your mileage may vary. I'd be really suspicious of early hypothyroid here. Endocrinologists are increasingly accepting of new TSH recommendations which say 2.5 (some say 3.0) is the upper end of the...
  5. beachbirdie
    Lemon water can be a little hard on your teeth..make sure you clean your teeth well after drinking!
  6. beachbirdie
    Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor. When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don...
  7. beachbirdie
    As others have said, some of us give up on the diagnosis and just get on with gluten-free living. My doc wouldn't order an endoscopy, thought it a waste of time due to my willingness to live gluten-free. I had only one positive blood test, TtG IgG, which could have indicated celiac OR other autoimmune activity (thyroid, for example). Doc said "I can't...
  8. beachbirdie
    Hi Kehoban...welcome to the forum! Short answer to all your concers...yes, you have a lot of signs that *could* point to celiac. Have you had a good, thorough check-up recently? You should get one that includes all the basic blood tests (metabolic panel, electolytes, vitamin D, Vitamin B12), Complete Blood Count. Make sure they test your TSH, Free T...
  9. beachbirdie
    Welcome back! I remember you! So sorry about the divorce. Not pleasant, hope you will be soon recovered both physically and emotionally.
  10. beachbirdie
    I don't use raw egg...I've had good success using powdered egg white. Since we don't eat a LOT of mayonnaise, I don't worry about the Omega-6 in the sunflower oil, but light olive oil works well as does avocado oil. Avocado oil is awfully expensive though!
  11. beachbirdie
    WOW! Thanks so much for posting this, mushroom! My DIL had a life-threatening bout with C. diff 18 months ago, and she has to be SO careful of what she eats! It only takes a little tiny bit of sugar, or un-fermented dairy to make her very sick and cause her a lot of pain. It will help her to be able to tell people there is scientific support...there are...
  12. beachbirdie
    Forgive me for pushing this, but which thyroid tests did they do? Did you see the results? Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known...
  13. beachbirdie
    You do have a puzzle here. So sorry you can't seem to get it nailed down. I was wondering...did you ask your doctor for copies of your lab results? They might tell you your test was negative, but they don't automatically do ALL the celiac tests. It is possible that you have antibodies that they did not test for.
  14. beachbirdie
    Please. PLEASE. Get new healthcare providers. Yours are blowing off something that could be very serious.Write a journal of symptoms, take that to your new providers. You want to have it written so you don't forget anything, and so you can include the circumstances under which this happens to you.
  15. beachbirdie
    My son-in-law, who has resisted our nutrition advice for years, finally went gluten-free 4 months ago. He no longer has his acid reflux and is off his meds. He also no longer has what he had always been told was Irritable Bowel Syndrome. He was amazed at how much better he feels with such a simple diet change. Hopefully you will heal and no longer need...
  16. beachbirdie
    Your post made me laugh out loud! Very cute!
  17. beachbirdie
    How do you know you do not have celiac? Have you had any specific celiac testing done? You should get tests for celiac antibodies...TtG Iga and TtG IgGDeamidated Gliadin Peptides (DGP) both TtG and IgGTotal serum IgAanti-endomysial antibodies (anti-EMA)If you have "leaky gut" you should suspect celiac.That said, the gluten-free diet does not have to be...
  18. beachbirdie
    Thank you for your thoughts. I also wish the disease had been better known back in the 1950's. Perhaps if we had figured out I had celiac, my whole family could have been looked at...I am waiting for results from a pathologist who just did a limited autopsy on my mom, he thinks she had lymphoma and perhaps an intestinal lymphoma. If that turns out to be...
  19. beachbirdie
    Thank you for your kind thoughts.Do ask your mom everything you can think of, before it's too late! I have had so many times over the last few weeks when I wanted desperately to ask mom about something, and now I can not. Some things I guess we have to wait until we are on the other side, where all will be revealed and pain and disease will not exist.
  20. beachbirdie
    Yes, funny you should mention the dental defects. I had a lot of decay as a child! ALL my molars got drilled and filled, and also I have some fillings on the sides where little pits formed and brushing should have protected. Thank you for your good thoughts.
  21. beachbirdie
    My mom just passed away a couple of weeks ago and I've been at her house going through some of her things. Among them was a little journal in which she was writing about me as a toddler, and a kindergarten report card that were very interesting... Mom wrote that I used to throw up when I ate, and that I had a lot of intestinal problems that no one could...
  22. beachbirdie
    Yes. But the root cause isn't necessarily the gluten itself, but would be related to the inflammation. Inflammation can cause swelling. I stopped having serious fluid retention when I gave up grains altogether.
  23. beachbirdie
    I lose a lot of hair. My thyroid is in a very good place for me, so not thyroid. My doc says my low-normal vitamin D needs to be higher still, could be that. My B vitamins are okay. Could be an imbalance of hormones I am told. I am frustrated by the hair loss but it is the least of the things that have bothered me, and the most elusive to solve...
  24. beachbirdie
    Yeah, makes sense. I was eating only a slice a day. Raised up some antibodies, not a lot. I've always been puzzled by reports of numbers "through the roof" or "higher than the doctor had ever seen", as if that alone were an indicator of the severity of disease.
  25. beachbirdie
    The TtG IgG is not a pointless test. Many here on the forum have been shown to have celiac, and their only positive test was the TtG IgG. Unfortunately, it's not as specific to celiac as other tests. Many conditions can cause the TtG IgG to be positive, though its presence IS and indicator of inflammation. If you do have an autoimmune condition going...
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