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Ursa Major

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Everything posted by Ursa Major

  1. Ursa Major
    Were you gluten-free when breastfeeding him? If you were not, then he was never gluten-free, as the gluten will be in the breast milk. His symptoms could be caused by celiac disease (and unless a baby is near death, celiac disease tests in babies are almost always false negatives, even if the baby has celiac disease). They could also be caused by dairy...
  2. Ursa Major
    Ritter Sport is German chocolate that you can get here as well. I am sure you can find other chocolate in Australia that doesn't contain gluten, though. It takes time to really get the hang of the diet, and shopping takes soooooo much time at first! But reading labels is a must and will keep you from getting sick. Some have found that they could make...
  3. Ursa Major
    You might have several issues going on. You might be suffering from withdrawal symptoms, which is common when starting the gluten-free diet. Depression is not uncommon as part of withdrawal, because your brain is not happy with you taking away its feel-good drug (gluten, which acts like an opioid on the brain in susceptible individuals). On top of that comes...
  4. Ursa Major
    I don't understand why you take Cortef? It is NOT a low dose of hydrocortisone at all, but fludrocortisone, another hormone your adrenal glands produce, which controls blood pressure and sodium levels, amongst other things. If you don't make enough cortisol, you need to actually take hydrocortisone to supplement that. If you have low levels of aldosterone...
  5. Ursa Major
    I am somewhat confused here. I take Cortef because of very low aldosterone. Cortef is fludrocortisone to supplement your low aldosterone, and hydrocortisone is taken when your adrenal glands won't put out enough cortisol. I take both, 20mg of hydrocortisone, 0.15mg of Cortef, and 150mg of Armour a day to keep functioning. I have never heard of anybody...
  6. Ursa Major
    Meridith, have you tried putting your little one on a gluten-free diet? You never know, maybe he will start sleeping through the night! He might wake up because his tummy hurts and nurses for comfort. I wouldn't nurse a child that old during the night. I nursed my youngest until she was almost two years old. But only first thing in the morning, before...
  7. Ursa Major
    Hi Matty, and welcome to these boards. I am glad you finally figured out what made you sick. But you absolutely CANNOT eat sauces containing gluten, or anything else with it, even if you don't get obvious symptoms. Sauces can be thickened with corn starch or light buckwheat flour (which I like best) and nobody knows the difference, they taste and look...
  8. Ursa Major
    Actually, your doctor is ill informed. Violent vomiting is quite symptomatic of babies and toddlers with celiac disease! Adults rarely vomit with gluten ingestion, kids don't necessarily have the same reactions to gluten as adults. I am not sure this doctor will be helpful at all. If it was my baby, I would just not give him anything containing gluten...
  9. Ursa Major
    Have you been checked for nutritional deficiencies? My heart used to go crazy when I was anemic (low ferritin), but also when I was low on potassium at one point. A magnesium deficiency can also cause heart trouble. You may be low in vitamin D, B vitamins (especially B12 and/or B6) as well. So, unless those levels have been checked recently, you ought...
  10. Ursa Major
    Hi Jenny, I can't eat any grains, either, including rice, or nightshades (or a lot of other things). I bet my diet is even more restricted than yours! I can't eat any fruit other than peeled pears, and sometimes a peeled golden delicious apple. And a lot of veggies are out as well. But hey, better a restricted diet than feeling as terrible as I used to...
  11. Ursa Major
    Are you getting enough saturated fat? Try adding more fat to your diet in the form of non-hydrogenated coconut oil (the healthiest saturated fat there is), bacon, eggs, avocado...... Your baby is taking fat from you, and you need to not only replace it, but have enough for yourself. Every cell in your body needs saturated fat, and vegetable oils (including...
  12. Ursa Major
    I was tested to have very low aldosterone levels (a hormone made by the adrenal glands) a year ago (the 'normal' range is supposedly 60 to 780, and mine was 73). I have been on Fludrocortisone since last July, when a doctor in Germany agreed that not only was a level of 73 not normal, but dangerously low (my blood pressure had gone down to 85 over 55 by then...
  13. Ursa Major
    I imagine it would be the curry powder. Lentils are fine on a salicylate light diet. Everybody who has a salicylate intolerance has a different threshold on how much they can tolerate. Red grapes are a definite no-no. The other ingredients of your soup are okay, unless you eat a lot of it. Where a food is grown influences the levels, too. That is why...
  14. Ursa Major
    Okay, I misunderstood you then. Yes, it has barley malt. They are now declaring it gluten-free, because the gluten is below 20ppm. But obviously, it really isn't 100% gluten-free. I just found here today that in Europe (where the 20ppm originated) they would not call it gluten-free, but would rather say, "Suitable for a gluten-free diet". If they say ...
  15. Ursa Major
    Those blood tests are notoriously unreliable in children under six at the best of times. But with your daughter having been on the gluten-free diet for that long, she has probably completely healed by now, since children heal very fast. What a terrible idea to destroy her villi again and make her possibly deathly ill, just to confirm what you already know...
  16. Ursa Major
    What you really mean is, you use a rice milk, but not the Rice Dream brand. I use the President's Choice Organic rice milk, which not only tastes better than Rice Dream, but is cheaper as well. And it doesn't have gluten.
  17. Ursa Major
    Besides the fact that any kind of unfermented soy is toxic and very unhealthy, a lot of people with celiac disease can't tolerate it at all. Lots of us get pretty much the same symptoms from soy as from gluten. Both soy and dairy have also shown to cause villi damage. I guess you'll have to find another milk substitute. Two better ones than soy milk...
  18. Ursa Major
    Sandy, you are so right on everything you said, I couldn't have said it better.
  19. Ursa Major
    I would stay completely dairy free for a month, and then try lactose free milk for a couple of days. If his symptoms return, you will have your answer that he is casein intolerant. If he is fine, keep giving him lactose free dairy. Mind you, it might take a little time for symptoms to return, in which case it would be casein after all. But for now,...
  20. Ursa Major
    It is possible that you aren't getting better because the dairy you eat is hindering healing (the same goes for soy, if you are consuming it). You may be intolerant to casein, rather than lactose. My youngest daughter is intolerant to all parts of dairy, except lactose! If you are casein intolerant you won't outgrow it any more than a gluten intolerance ...
  21. Ursa Major
    Well, he might dismiss the Enterlob results, but he can't dismiss your genes. Those are the 'official' celiac disease genes, and together with your symptoms suggest celiac disease. Blood work is very unreliable (false positives are almost unheard of, but false negatives abound), and quite a few people here had a positive biopsy after negative blood work....
  22. Ursa Major
    I am glad your living nightmare is finally over, it must be such a relief. Now you can just concentrate on school, and relax at home as well, without all the stress of being upset, worried and scared because of that horrible roommate.
  23. Ursa Major
    Are you on a gluten-free diet now? If you are, an endoscopy will be useless, as it will likely come back a false negative anyway. With you testing with Enterolab, I assume you have symptoms pointing towards celiac disease. That, combined with having two celiac disease genes, should, in my opinion, be confirmation enough. On the other hand, if you are...
  24. Ursa Major
    In Europe they have wheat starch which supposedly contains only trace amounts of gluten and is declared safe for celiac by them. But a lot of people with celiac disease react to it anyway, and I don't consider it safe at all. I personally wouldn't eat it.
  25. Ursa Major
    The celiac disease tests are extremely unreliable in children under six, and even more so in babies. It is not very likely you get a positive test result in babies who aren't so sick already that they are on death's door. For a seven month old baby the best and most reliable test is to put her on a gluten-free diet to see if it makes a difference. I don...
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