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GottaSki

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Everything posted by GottaSki

  1. GottaSki
    The DGP is the newer Gliadin based test. Of all the Celiac antibody tests, the AGA is the least important. I would feel confident having my kids tested with DGP rather than AGA. The only place I know to have all possible tests ordered is from your doctor - perhaps someone else knows of another a source.
  2. GottaSki
    Open Original Shared Link This panel is $200 - it includes Deamidated Gliadin Peptide (DGP), but not AGA. I did contact them for a price on an individual test for one of my kids at one point - so perhaps you can contact them and check if they offer AGAs. Good Luck
  3. GottaSki
    The damage from lack of proper digestion/absorption of nutrients is very tough to recover from. While I can't be certain food is the cause of your symptoms - it is very telling that you improved drastically with B12 supplementation. Have you had recent nutrient testing? Perhaps you are low in other vitamins, minerals or amino acids. It is possible that...
  4. GottaSki
    Too funny - I remember thinking why would someone have a bust as their profile pic when I was a newbie - don't think I ventured into the funny pages back then or maybe I would have got it -- I don't think I've seen the one I vaguely remember, but maybe it was Jestgar's kitty -- keep 'em coming -- thanks for the giggles
  5. GottaSki
    No punching yourself allowed (flipping thru Ceiac Handbook) - yep there it is - Rule #2 - accidents happen - especially in the early days. It will happen again, not in the same way, but an ingredient will change in a product you have purchased before or you'll go out to eat and think you took all possible precautions or a million other scenarios. These...
  6. GottaSki
    Hello Bella! Flattened villi can take quite a long while to heal - the damage likely took many years to develop and can take time to heal. I believe the most important statement you made is when you added gluten back in you felt much worse - this is telling. Some of us take months and even years to heal once gluten is removed - it can be a very slow...
  7. GottaSki
    or PoGo stick cap - anyone been bouncing lately? Although I enjoyed the airplane theory
  8. GottaSki
    Thanks Kat and sorry you've had such a rough road to diagnosis - your story has some similarity to mine. One positive is your vacation from gluten certainly may be the most important indicator. I do suggest you request the additional: tTG IgG DGP IgG AGA both IgA & IgG EMA IgA - my lab doesn't run it unless the tTG IgA is positive - but other...
  9. GottaSki
    There are the same tests as you had, but IgG based rather than IgA. What symptoms led you to Celiac testing? Where any of your nutrients low? Is this your primary or gastro ordering these tests? Sorry for so many questions - just want to suggest the next best steps and its difficult without more info. Edited: just re-read your post and saw...
  10. GottaSki
    You are fortunate indeed to have Dr. Harmon - he diagnosed me at UCSD and I miss him very much! Glad you found a safe restaurant - don't let the ignorant get you down. I love your fb post - I hope your friend sees it and spends a little time educating herself - one person at a time - we will change the tide.
  11. GottaSki
    Both my daughter and I had significant hearing loss. Mine was in my left ear only and started/was noticed at 6 or 7 - slowly but steadily worsened over the years, had surgery to replace a genetically missing inner ear bone that did not repair my problem - was about 75% deaf in my left ear at the time of celiac diagnosis - I could hear sounds, but could not...
  12. GottaSki

    ARCHIVED Dealing With Bad Doctors

    GottaSki replied to whitepine's topic in Doctors

    Very frustrating indeed - I completely understand the trying not to cry when talking to doctors - I was dismissed and my celiac symptoms were dismissed as stress, overwork, hormones, motherhood and was suggested more than once that antidepressants would help me feel better. Wrong! I had undiagnosed Celiac for decades - this is why I encourage you to keep...
  13. GottaSki
    Never! I also use a lot of cinnamon and last night the nutmeg got added in - going to increase it next time - which may be this afternoon - not addictive at all
  14. GottaSki
    I find the term "screening" for celiac to be confusing. The University of Chicago and other celiac centers often run screening fairs to screen the general population. For this use the tTG-IgA with Total Serum IgA is excellent. If a person presents with symptoms of Celiac Disease or demonstrated reactions to gluten, I strongly believe a full celiac panel...
  15. GottaSki
    No, that is not true. The best thing to do is make sure your doctor orders a complete celiac panel along with nutrient testing. If these come back negative and you have symptoms of Celiac Disease, the next step should be endoscopy. The diagnosis process can be frustrating - but taken one step at a time armed with knowledge of proper testing procedures...
  16. GottaSki

    ARCHIVED Eggs?

    GottaSki replied to carolynmay's topic in Super Sensitive People

    two of my kids have the eggs in baked goods dealio - one gets digestive issues when eating plain eggs and the other has more of a texture problem with eggs -- can't believe it is one of the few things I can tolerate - am very grateful for the incredible edible egg!
  17. GottaSki
    I've heard Goodbye Gluten is excellent - someone tasted it in their celiac support group and found it at their Wegman's - I think. I tried emailing them to find out when I could expect to see it on shelves here in Southern California and got an email back saying they don't respond to emails without a phone number listed - I don't give out my phone number...
  18. GottaSki
    Now it makes me crave Campbell's Tomato Soup with Grilled Cheese - wow now there is a scary combo for me that used to be a staple on rainy days
  19. GottaSki

    ARCHIVED Dealing With Bad Doctors

    GottaSki replied to whitepine's topic in Doctors

    No blue hands here, but plenty of adverse reactions to meds and dismisals by doctors. All I can tell you is what I wish I could of told my 25 year old self. Listen to your gut - the pun is sad yet true. If your hands are blue since starting this med and the prescribing physician is dismissive - find another. I would avoid the ER unless your hands were...
  20. GottaSki
    Grilled Ahi - by one very happy fisherman Spaghetti Squash with pesto for me gluten-free pasta with butter, parm and garlic for my men Fried apples a la Bunnie for all
  21. GottaSki
    I don't think you need worry that two days would change the results significantly. I'd be more concerned that your doctor may not have ordered sufficient blood tests. The tTG-IgA is a celiac screening test, but not a good analysis of possible Celiac Disease if symptoms are present. Full Celiac Blood Panel: Total Serum IgA Tissue Transglutaminase...
  22. GottaSki
    Yes, Celaic testing can be incredibly frustrating. It is good that you are questioning her results - far too many are told that they do not have Celiac Disease only to cause far more damage to their health. I would make sure she gets the rest of the blood tests - your primary should be able to order them - then remove all gluten from her diet for at least...
  23. GottaSki
    I'm a bit late to add questions for your call from your doctor, but were any of the antibody blood tests for Celiac Disease run? With your symptoms, you should have a full celiac blood panel along with nutrient testing beyond the CMP. The endoscopic biopsies do not always catch Celiac Disease as the damage can be spotty or not yet severe. Request...
  24. GottaSki
    She certainly could have Celiac Disease. Do you have her Celiac Antibody Blood test results? If you post them here we can help interpret them - same goes for the biopsy report - it is helpful to know how many samples were taken and any language used to describe them. Have you been tested for Celiac Disease? It is genetic, tends to run with other AIs...
  25. GottaSki
    Hi Mars! The blood results are negative. Your total IgA is within normal range -- it is on the low side of normal which interestingly is similar to the results we all have in my family with mostly negative IgA antibody results. I have yet to find a published paper making a correlation between "low normal" Total IgA and accuracy of IgA antibody tests...
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