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
    Sorry to say this, but your endocrinologist and your nutritionist are equally dumb. A weak positive celiac test does not indicate allergy. An allergy is mediated by a different set of immune globulins, IgE. Basically, with this disease and many others, doctors don't know what to do with it in the early stages, before the catastrophic damage has occurred...
  2. beachbirdie
    I don't know where you might have heard it is bad to avoid gluten if non-celiac! In reality, grains are a relatively recent addition (well, relatively recent compared to the timeline of history!) to the human diet. There is no harm in avoiding it, we do not have a nutritional "need" for it. Have you been given any referrals for follow-up? You have a...
  3. beachbirdie
    You MUST keep eating gluten if you want accurate testing, as hard as that is. If you don't need an "official" diagnosis, you can go gluten-free without a doctor, your body will tell you by feeling so much better. There are ways to enjoy lots of familiar "comfort" foods without gluten, just need to look a little. Recipes abound on the Internet, and...
  4. beachbirdie
    Another thing to think about is xanthan gum. A lot of people develop allergy/sensitivity to xanthan gum after a certain time of exposure, and it can make you feel sick, even make you feel like you might have been "glutened". Xanthan gum is used in most commercial gluten-free foods and mixes, though some are using guar gum which has a lower sensitivity...
  5. beachbirdie
    That certainly ups your doc in MY estimation! Happy healing!
  6. beachbirdie
    Exactly what Skylark said. The pathologist who writes the report does not perform any diagnosis, just describes the observation. It is up to the doc to make the diagnosis, and this doc clearly missed it. Was he planning to wait until you DO have total atrophy before awarding his Seal of Approval? Ugh.
  7. beachbirdie
    You are correct, two biopsy samples are insufficient. The damage can be patchy, and with so few samples they easily miss it. Also, there is a lot riding on the skill of the doc who takes the samples, as well as the pathologist who interprets. If I heard "probably" negative, I would feel very insecure. If you feel good off gluten, sounds like a good...
  8. beachbirdie
    Thanks for the update! I hope you will soon be feeling great. I feel like Skylark, never sure whether to be happy for the positive results or whether to be sorry. Knowledge is power, or so they say, so if one is feeling crummy it's nice to know that it's from a cause that is relatively easy to handle without a lot of drugs and procedures!
  9. beachbirdie
    It doesn't look like the DQ association is an important factor. Since it is kind of a "maybe" as far as the marrow transplant people are concerned, they probably did not do any genes that would relate to celiac. A chart is at the site of the Open Original Shared Link.
  10. beachbirdie
  11. beachbirdie
    Well, the biology is intricate, but to make a long story short, an allergy is a specific type of immune reaction. Your body perceives something as an invader, and the immune system generates an immune response with a specific immune globulin, Immune Globulin E (IgE). This causes activity in the cells that stimulates the release of histamines (contained...
  12. beachbirdie
    How about Sjogren's Syndrome? That can cause white matter lesions, dry eyes/mucous membranes, rashes, hair loss, central nervous system problems (numbness/tingling). Sjogren's is an autoimmune condition, like celiac. Oh...funny thing... Sjogren's is often associated with celiac! Sorry your brother is being so stubborn. I did a Google search and...
  13. beachbirdie
    Hi there. Have they given your thyroid a good going-over? That can contribute greatly to fatigue, depression, and anxiety. The only panic attacks I ever had in my life were when my thyroid was crashing.
  14. beachbirdie
    OOPS! Got it fixed, sorry about that! Thanks for pointing out the problem!
  15. beachbirdie
    EDITED TO FIX LINK! Your friend might look into the Specific Carbohydrate Diet, you can read up on it at Open Original Shared Link. It is not only gluten-free, but grain-free and starch-free. This is a diet created especially for people with Crohn's, ulcerative colitis, and other intestinal maladies. My daughter-in-law went on it after a long struggle...
  16. beachbirdie
    I'm very interested to hear your biopsy results! Like you, I tested positive in the ttg igg, and negative on everything else. It's not common to test this way, I've heard! Haven't figured out what to do yet. I just sent my result to my doctor (I didn't go through her for testing) and am waiting to hear what she says.
  17. beachbirdie
    With Hashimoto's you just might be sensitive to gluten; it often is associated with celiac. I have Hashi's, and also experience fatigue with normal thyroid numbers. I sleep 10 hours a night, and wake up more tired than when I go to bed! Anyway, just wanted to say welcome! I know you are on "pins and needles" while awaiting your results! How nice that...
  18. beachbirdie
    Don't know of any place that does this for under $350. The latest price I saw for Open Original Shared Link was around that. This is quoted from a Open Original Shared Link site, it came from an email that Kimball sent to a member in response to pricing inquiry in 2009: Thank you for your inquiry. The list price for the Celiac Disease DNA Test is...
  19. beachbirdie
    Sorry for the duplicate post. Don't know what happened!
  20. beachbirdie
    It is common for people to test positive on only single tests. Doesn't make them any less positive! Good luck!
  21. beachbirdie
    We often use Bob's Red Mill gluten-free pizza crust mix. It's made the pizza lovers in my family very happy.
  22. beachbirdie
    Your doc is an idiot. The deamidated gliadin test is very specific, highly accurate. False positives would be very rare. Why on earth would your doctor say your test is a false positive? What other tests did your doc do? A ttg would have been useful as well as anti-EMA. Your test suggests the need to be gluten free, and I would imagine you would feel...
  23. beachbirdie
    I started dabbling in gluten-free and grain-free eating because my daughter was having digestive issues we couldn't narrow down. We finally figured out that is was most likely wheat causing her trouble. Even on gluten, all her serology comes back negative. Then my mom started having things that looked suspicious, and we had her tested, but she came back...
  24. beachbirdie
    I'll third on Nature-throid. I like it, it has always done well for me. The reformulation nightmare put me off Armour forever. It doesn't work as well as it used to, and they played horrible politics with patients. Inexcusable. My pharmacy keeps switching me back to Armour because it's the only "natural" they stock; I keep telling them "put it away...
  25. beachbirdie
    We make yogurt in our house all the time! There are lots of ways to do it, but because we make so much we went ahead and got a yogurt maker. There are many kinds, some make it in little single-serve cups, some make larger quantities. Get a good-quality yogurt culture, you can't make too many batches using "old" yogurt. You heat the milk, let it cool...
×
×
  • 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.