Jump to content

beachbirdie

Advanced Members
 View Profile  See their activity

  • Posts

    628

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by beachbirdie

  1. beachbirdie
    As I ponder some of the information I have been reading, I started to wonder... Can someone tell me what exactly causes the damage to the villi? If the damage is caused by antibodies, how would the villi be damaged in those people who have celiac, but are seronegative? Is there something else that happens to cause the blunting? Please don...
  2. beachbirdie
    I hope you get your other issues sorted out! If you actually have the CVID, the pneumonia shot won't do you any good! It would be worth having them explore that further for you. It's rare, so they won't likely think of it on their own. I hope they'll do your IgG! I've not pursued infusion for mom, I just discovered the latest information this week...
  3. beachbirdie
    Which IgA did they test? And what are the ranges for the tests they did? It is not possible to interpret tests without that information. On the plus side, if your Ttg has dropped that much, you are probably doing great on your diet!
  4. beachbirdie
    I just want to emphasize what the other poster said about your biopsy. It is extremely important that you do not let a negative biopsy steer you away from a gluten-free diet. The likelihood of a false positive on your blood test is so slim that some docs would stop there with a diagnosis, and not go on to do a biopsy. In this case, the biopsy will just...
  5. beachbirdie
    It seemed like kind of a dumb question for me to ask, but I thought (in my own foggy brain) I might be missing something! I appreciate you taking the time for even an obvious question!
  6. beachbirdie
    I'm starting to wonder now if CVID (Common Variable Immunodeficiency) is less rare than they think, and wonder if that might contribute to the number of people who are told they don't have celiac, but don't respond well to the diet. Did they happen to test your total serum IgG? CVID shows damage to villi that is identical to celiac, but is NOT celiac...
  7. beachbirdie
    As I am finding out, there may be more things to consider. I don't know if you are asking specifically because of your own experiences, but it is possible there is something different from celiac going on. I've just discovered a condition called Common Variable Immunodeficiency (CVID). It does what it says, presents deficiency of immunoglobulins. If...
  8. beachbirdie
    Wow, thanks for all the links, IrishHeart! Got my work cut out for me! I was aware that there could be a connection which is why I braved asking the hematologist for more tests...I knew he would not likely balk as badly as the general practitioner, neurologist, chiropractor, and osteopath did. I will get to reading. Sadly, mom has not yet begun...
  9. beachbirdie
    Thanks for the suggestion. I definitely will be looking into this now, after reading my mom's labs. She has some strange things going on; the immune deficiency issues can cause intestinal damage that looks just like celiac damage, meaning it's highly likely her intestines are trashed and she needs all the help she can get if she is going to start absorbing...
  10. beachbirdie
    Thank you very much! I have a whole new "rabbit hole" to dive into now. I've discovered the need to differentiate between Common Variable Immunodeficiency versus issues created by what the hematologist calls "smoldering" multiple myeloma; now trying to sort out a whole new world of information. I was thinking these tests would put everything in a perfect...
  11. beachbirdie
    My mom's doc finally sent me the results, I posted into a new topic HERE. But, in case you are still following, and don't want to go to the new topic here's the short version. Doc did some DGP and EMA, did some IgG and IgA. In an unusual move, he also tested total serum IgG. My mom came out LOW. Would this affect her other celiac numbers...
  12. beachbirdie
    I originally posted a request for help HERE and thought I should start a new topic since so much time has passed. I finally received a packet with my mom's lab work. At first glance, I would assume mom is NOT celiac as she tested negative for all the celiac antibodies. However, and this is puzzling, mom had these curious numbers: Immunoglobulin A...
  13. beachbirdie
    Sorry I missed your note. It is definitely possible to be celiac without the two main genes, as nora said. I think in Europe they are using DQ1 as a diagnostic marker. Not to mention, even if you are not celiac, you could very well be "non-celiac gluten intolerant." That is a very real condition, it means gluten makes you really sick, but without the...
  14. beachbirdie
    YES! We have just discovered Udi's wonderful products! I'm thinking we can give her things she loves without too much argument on her part! And, my adult daughter is going to stay with mom for a month to manage the diet. We might go as far as SCD/GAPS but I'm not sure mom will tolerate that early on. Still waiting for a little more information from her...
  15. beachbirdie
    What thyroid tests have they done? They should do more than just TSH. They need to look at your levels of Free Thyroid Hormone (Free T3, Free T4). You have a positive ANA. That is an indicator of autoimmune disease. They should be looking into this...did they test your thyroid antibodies? Not sure why they only took one biopsy. I am thinking...
  16. beachbirdie
    Ahh. I did not understand that you were looking to see which of the 9 types you might have. Apparently you can possibly get full typing through Open Original Shared Link, but you'd probably have to have a doctor order them. You could contact Quest and ask if there is a way to self-order, I imagine it will be expensive. Enterolab can supposedly do...
  17. beachbirdie
    Thanks for your suggestions, Bubba's Mom! We'll make sure to throw some digestive enzymes into the mix. Do you use them? If you do, which kind? We will definitely be supplementing the B vitamins, especially B12; Vit. D, CoQ10, cold-water fish oil. Also going to put her on a good quality probiotic. We might, if she will tolerate it, even go as...
  18. beachbirdie
    Are you looking for a way to get testing without a Dr. order? Open Original Shared Link does it I think, according to an article on the front page of this site. Prometheus and Kimball are the ones you see through the University of Chicago Celiac Center. They do a Open Original Shared Link every fall. https://www.celiac.com/articles/21567/1/Ten...
  19. beachbirdie
    Hi Sanjoseguy...I grew up there! Third-generation Californian, though elsewhere now. Anyway, good that you are asking for the T3/T4 tests. Make sure they are the "free" and not "total" measurements. TSH alone does not indicate hyperthyroid, it is the excess of thyroid hormone that truly tells if you are hyper (though hyper would be the assumption since...
  20. beachbirdie
    You can get tested through Open Original Shared Link. You get the Prometheus testing, they do the A1 and B1 subunits. The one you can order yourself is a saliva test, supposed to be accurate, and costs $329.
  21. beachbirdie
    Bobs Homemade Wonderful Bread Mix is pretty good but the bread has a slight rubbery feel to the mouth. We also do something that is useful on the Specific Carbohydrate Diet for the ones in my family that can't eat any sort of grain. They are made sort of like pancakes, but they make a wonderful sandwich holder. My daughter likes them better than the loaf...
  22. beachbirdie
    I agree with Skylark. It is important, once you are being treated for hypothyroid, to have them test your actual thyroid hormones. They should run the Free T3 and Free T4 tests along with TSH. TSH alone is not the way to adjust thyroid meds, it doesn't reveal much about your thyroid function if you are being treated with supplementary hormone. "Normal...
  23. beachbirdie
    Hi... I don't know much about Lyme, but do know it can have far-reaching long-term effects. I'm going to put a link here to a blog I read a lot, please ignore the political parts and read about her experience with Lyme. You may find the politics disagreeable, but Lyme cuts across all ideologies! I don't know if anything she is describing fits your...
  24. beachbirdie
    I'm still waiting for the results of my mom's celiac tests, should have them in a couple of days. Regardless, we are going to try getting her on a diet and exercise program to improve her health. She is very deficient in Vitamin D, also has very low serum protein. She has anemia, though she is not iron deficient. She is 83 years old and on top of the...
  25. beachbirdie
    Hi Heather, welcome to the board. Have you ever been diagnosed with a thyroid problem? Are you by chance taking thyroid medication? People taking natural thyroid medication (Armour, Erfa, Nature-throid) often have low FT4 and low TSH. Your TSH is not technically "low" but is a lot lower than most people have it when they have normal thyroid function...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.