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Skylark

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Everything posted by Skylark

  1. Skylark
    Oh, you're eating low gluten. Your GI may be smart enough to know that your serology could come back negative. I'm more and more impressed with this doc. As for the surgeon, you can't think of them like other doctors. Good surgeons have great concentration, tremendous manual dexterity, and an insanely good understanding of anatomy. They are not so...
  2. Skylark
    That testing matrix is depressing. It is horribly conservative -- the kind of thing that has doctors telling people with anemia, low vitamin D, chronic diarrhea, axiety, and ridged fingernails that they are perfectly fine and have anxiety-caused IBS. Your son will probably have an endoscopy and biopsy. No matter what the doctor says, once testing...
  3. Skylark
    If you're ultra-sensitive, there is the blue cheese question too. Many blue cheeses are 100% naturally gluten free but some artisan cheeses have the mold culture started on bread. There is still no detectable gluten in the finished cheese so even the cheeses with cultures that were started on bread are safe for almost all of us. If you're unlucky enough...
  4. Skylark

    Blue Cheese

    Skylark posted a blog entry in Skylark's Blog

    If you're ultra-sensitive, there is the blue cheese question too. Many blue cheeses are 100% naturally gluten free but some artisan cheeses have the mold culture started on bread. There is still no detectable gluten in the finished cheese so even the cheeses with cultures that were started on bread are safe for almost all of us. If you're unlucky enough...
  5. Skylark
    I can't tell you what your doctor is thinking. I can tell you how the tests work. Genetic tests assess risk, but 30% of the US population has a "celiac" gene and only 1-2% are celiac. Most of the celiacs in the US have either DQ2 or DQ8. Thing is, there are also a few people without a "celiac" gene who definitely have celiac so the genetics can be misleading...
  6. Skylark
    Heh. Your surgeon sounds so typical! Don't expect them to diagnose or have any empathy. They are best with anesthetized patients where they don't have to talk. Your GI on the other hand sounds like a very sharp diagnostician but I am confused as to why he would order the gene test and not the blood test? Have you had a celiac panel? If you go...
  7. Skylark
    Endomysial IgA is completely specific for celiac disease, and the positive TTG confirms that it wasn't an incorrect result. There are medical articles saying that people with positive endomysial don't need the biopsy to confirm celiac. The advantage to getting one is that you know her baseline. TTG numbers are not at all correlated with celiac disease...
  8. Skylark
    Don't let your GI push you into the fallacy of needing a specific label for whether or not you're celiac. Gluten intolerance and celiac are in the same spectrum of genetic gluten intolerance, both can make you very sick, and both require you to be on a gluten-free diet. If gluten gives you symptoms of intussusception it doesn't matter whether or not you...
  9. Skylark
    It seems like some doctors abandoned their common sense in medical school. I'm lucky to have found one who hasn't but they are SO rare. Thank heavens our diet doesn't require a prescription.
  10. Skylark
    When I was soy-free/cow casein-free I made hot cocoa in goat's milk with Hershey's powder. If you're feeling brave, I found this allergen-free fudge recipe on a Google search. Open Original Shared Link
  11. Skylark
    Congrats! I'm so happy to hear you have found what works!
  12. Skylark
    That's easy! Grab the Betty Crocker gluten-free cake mix and one of the many gluten-free Betty Crocker frosting choices. Your daughter will never know the difference and you'll be able to share her cake.
  13. Skylark
    I completely agree about the drugs. It's not a way to live and it's not good medicine. I think all of us undiagnosed folks downed a pizza/sandwich at some point and regretted it. That's part of convincing yourself that gluten-free works. The next step in seeking a convincing diagnosis is to go gluten-free for a few months, enjoy the lower anxiety...
  14. Skylark
    Wow, they feed you for 2-3 days on a postdoc interview??? I got lunch and dinner on one day and that was it. On job interviews, I explain that I have celiac disease, research the area, and make specific suggestions about restaurants that can accommodate me. For packing, I can survive pretty well on a loaf of Udi's and peanut butter. Unfortunately...
  15. Skylark
    Lecithin is usually made from soy, sometimes sunflower oil. If you're in the US and anything is made from wheat, it must list "wheat" on the allergy disclosure. Scott has Lecithin on the safe list and he's pretty careful researching. https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html
  16. Skylark
    Low B12 can cause mania??? OMG.
  17. Skylark
    I'm sorry you're still feeling sick. You are probably not getting CC if your TTG has dropped back to normal. What your Dr. probably didn't tell you is that a Marsh 3 biopsy typically takes a couple years to heal, and can take as long as five years if the damage is really bad. At three months with the TTG down, now your body can start to repair damage....
  18. Skylark
    So many true things here. If you ever find a use for those gluten-free bricks and doorstops, I'll happily send you mine to sell.
  19. Skylark
    It's pretty basic psychology. We use labels to answer the question "who am I?" Labels offer recognition, legitimacy, and a sense of belonging to a similarly-labeled community. You have all sorts of labels for yourself, whether or not you are aware of them, becasue a sense of belonging is a very basic human need. Family surnames, job titles, hobby titles...
  20. Skylark
    I avoid them as much as possible. I find that if I am eating correctly and taking enough vitamins, minerals, trace elements, and fish oil, my anxiety and depression are usually not enough of a problem to medicate. This is in stark contrast to my awful mental health eating gluten. If you had total villous atrophy and are still healing, you might need...
  21. Skylark
    You poor thing. It sounds like you are struggling with some depression. It happens to a lot of celiacs because the gluten poisons our minds as well as our bodies. The shock of the diagnosis and a lifetime diet change is enough of a shock to make you lose your mental balance for a bit. I'm not sure why you think you can't have a child, and I'm guessing...
  22. Skylark
    Yep. And simplest of all is "wheat makes me really sick".
  23. Skylark
    He has one risk allele, DQ2.5, and one non-risk allele which hasn't been specified. That gives him 10x risk for celiac with respect to the general US population. I'm not sure what else you're asking. What do you mean by "each of these things"? Is this article helpful? Open Original Shared Link
  24. Skylark
    I didn't bother with testing after being gluten-free for about four months. My Dr. said it wouldn't be positive. I was never tested as it wasn't worth making myself sick again. I had a life to get on with!
  25. Skylark
    I am very upset that you would accuse me of linking to a virus! Those links are to commercial website for a well-known company with a Open Original Shared Link seal on the home page that guarantees that the whole website is scanned daily for viruses and malware. It works fine on my PC and I can't imagine McAffee would have missed anything. The second...
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