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Skylark

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Skylark

  1. Skylark
    You're DQ5, DQ6. By the way a negative test only means you're at low risk for celiac. There are people without the so-called celiac genes who are celiac by blood and biopsy.
  2. Skylark
    This is not legitimate celiac testing. Food allergy tests don't test for celiac and your strong response to gluten is more reliable than any pseudo-scientific homeopathic tests. Unfortunately we undiagnosed folks (I'm in that boat too) are stuck with either gluten challenging or continuing to live as if we're celiac. It sucks, but that's the reality...
  3. Skylark
    Ah, that's a lot more information than your first post. It makes sense to wait and retest, but EMA is not sensitive enough to only consider her celiac if EMA comes up. Did they run the new gliadin peptide IgG? That's supposed to be really good in kids.
  4. Skylark
    This doctor is stupid. No, you don't have to have positive EMA for a celiac diagnosis. Get her to a competent pediatric GI who will do a full celiac panel including deamidated gliadin IgA and IgG and a biopsy NOW. It's hard to get positive tests in kids at all so you should be deeply concerned about the positive TTG. Plus not all celiacs end up with positive...
  5. Skylark
    In truth, I would recommend you go off ALL processed foods and grains and eat a diet of only whole foods that you can be sure are 100% gluten-free. In particular, strictly eliminate corn as if it were a gluten grain as it's starting to look like corn can be a problem for some celiacs. I assume you're not eating gluten-free oats? Quite a few celiacs react...
  6. Skylark
    Yes, stuff comes through human breast milk. You can't extend it to grains coming through cows milk though. Cow dairy is completely safe in terms of being gluten-free, even if the cow is being fed wheat.
  7. Skylark
    I'm a little surprised that you would post false and frightening rumors in a thread where we are talking about misinformation on the Internet. Maybe you were trying to help my point? Cows have a wildly different digestive system from humans and they fully digest grains and grasses. Studies have shown that there is no trace of the grains cows eat in their...
  8. Skylark
    You are celiac. You have a positive blood test, violent reactions to wheat, and obvious malabsorption. If you want to tough it out for the scope it's fine but will the scope results really change your need for a 100% gluten-free diet?
  9. Skylark
    All milk and milk products. Milk as ingredients, cheese as ingredients, EVERYTHING from the dairy section of the supermarket including butter. All processed/packaged foods with milk, casein, whey, or lactose or that say "milk ingredients". It's best to be strict, remembering that you should have an answer in 2-3 weeks and you can always add foods back...
  10. Skylark
    I took the approach of eliminating everything for a few weeks, much like VydorScope suggested. Sometime you can have intolerance symptoms without even realizing them. I felt a lot better off all dairy. Then reintroduce Lactaid milk and see if you feel any different.
  11. Skylark
    Have you tried eating more healthy fats? Coconut oil, eggs with the yolk, nuts, olive oil, avocados, oily fish, and seeds are all healthy can help keep weight on. I don't skim fat off soups/stews either, making them richer. Fruit can help add some more slowly metabolized carbs.
  12. Skylark
    No, I mean you went to the trouble to type out all your Enterolab results in the other thread. It's handy to be able to scroll up and see all the great details you've provided, especially for those of us who are more science-minded!
  13. Skylark
    There is nothing else that would give a true positive. Sometimes people with a positive blood test result don't have a positive biopsy, though. Then the doctor has to decide whether it could be a false positive from a lab error, or what the likelihood is that the biopsy missed damage. There are other things doctors take into consideration too, like family...
  14. Skylark
    "Fecal Anti-tissue Transglutaminase IgA: 13 Units" TTG stands for Tissue TransGlutaminase.
  15. Skylark
    Yep and a fair amount of wrong/inaccurate answers on the forum too. There are quite a few of us who spend a lot of time and effort correcting misconceptions. Agreed that some people seem to have a better genetic background to eat dairy than others.
  16. Skylark
    Yes, make sure your doctor is doing some celiac biopsies. Ask for plenty; some doctors only take a couple and damage can be patchy. Good celiac doctors do 7-10 biopsies. As you mentioned it might not come back positive since you've been gluten-free but it's worth having done since they are scoping you anyway. Good luck!
  17. Skylark
    Damn doctors. They say this stuff with no clue of how it will make you feel. The biopsy is to get a baseline and see how bad the celiac damage is, not specifically to look for cancer. The lymphoma is super-rare, with an incidence of only 1 in 50,000, and it tends to happen in people over age 50. It's good you figured out the celiac. Yes, pregnancy is...
  18. Skylark
    When you see your doctor, get a copy of the biopsy report and post it here. Many doctors misinterpret biopsies that aren't obviously celiac and we can help you understand it. Really, any damage at all after this long gluten free would be a really strong evidence for celiac. Plus the itchy blistered rash on your hands that cleared up gluten-free sounds...
  19. Skylark
    Look in the legitimate medical literature (which does not show up on Google) and you will get an entirely different picture. Most of the health information on the Internet is garbage.
  20. Skylark
    Fecal anti-gliadin IgA is not stable if you test it repeatedly. It also comes and goes in normal, non-celiac people. You might not realize this, but Enterolab's own data show that 30% of normal people who eat gluten just fine come up positive for anti-gliadin in their tests. (This is why your doctor is saying Enterolab is too sensitive.) Basically Enterolab...
  21. Skylark
    Answering in your other thread. In the future, it's easier to help you if you don't make multiple threads. If you don't get an answer in a day or two (a lot of us are kind of busy) it's easier to help you if you bump the post with the lab results.
  22. Skylark
    It's REALLY hard to get a positive result on any of the blood tests. Nothing other than celiac gives deamidated gliadin. If you feel better when you try the gluten-free diet once your endoscopy is done you can safely assume you are celiac and not gluten intolerant. You might get better information from the biopsy but sometimes the positive bloodwork precedes...
  23. Skylark
    The first time I went off cow dairy it was at the same time as I went off gluten. It took a year until I could eat it again without a stomachache, though I'm not sure I tried sooner. I tolerated goat and sheep dairy that time. I have been feeling poorly overall and went back off dairy again after eating it five years. I've been off dairy since last...
  24. Skylark
    I tried GAPS, which is grain-free. GAPS didn't work out very well because I'm sensitive to the sauerkraut (oops) but I learned that I do well eating low-starch. I find I'm more tired if I eat a lot of starchy food. I seem to do best with no more than 1/3c of cooked rice or 1/2 a small potato worth of starch about once a day. More than that leaves me sleepy...
  25. Skylark
    Brilliant! I'll have to remember this.
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