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Ursa Major

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Everything posted by Ursa Major

  1. Ursa Major
    I agree, there is absolutely NO WAY that any tests for celiac disease could be positive after being on the gluten-free diet for six years! Any damage you may have had will be long healed. And going back on gluten (four slices of bread a day for at least three to six months to even have a slight chance of accurate testing) is NOT a good idea as it could trigger...
  2. Ursa Major
    It seems that a lot of people are ill with the stomach flu these days, which causes the same kind of symptoms you describe. Normally nobody will throw up for that long because of being glutened (even though it is possible, of course). I just had the stomach flu a couple of weeks ago, and then my grandchildren (who I was visiting at the time) got sick a week...
  3. Ursa Major
    Hi Katiejane, and welcome to these boards. IBS is NOT a valid diagnosis, as it is a bunch of symptoms which have a cause! If your bowels are irritated, something is causing that. In your case, it could be gluten, and/or soy as well as dairy (not just lactose, but ALL dairy), or any number of intolerances. Your symptoms could well be celiac disease, or...
  4. Ursa Major
    Hi Talia, and welcome to these boards. With being gluten-free for three months, and only being back on gluten for two weeks, you were pretty much guaranteed a negative biopsy, despite probably having celiac disease. All your symptoms point towards celiac disease. With an IGA deficiency you would obviously have negative blood work results, too. Your...
  5. Ursa Major
    I agree that your doctor is absolutely clueless! I found that taking cod liver oil is the best and fastest way of getting your vitamin D up to where it belongs. The best brand (that doesn't taste gross, either) is the Carlson brand. Your iron is so low that you really should get iron injections once a week until it goes up to normal, and consistently stays...
  6. Ursa Major
    Has your aldosterone level been tested? Low aldosterone will cause extremely low blood pressure. Aldosterone also regulates your body's sodium and calcium levels (amongst other things). It sounds like you should be on fludrocortisone in addition to the hydrocortisone (I am, and with taking the FC my blood pressure has gone back up to normal).
  7. Ursa Major
    I was diagnosed with fibro about eight years ago. In the meantime, it looks like my fibro was almost 100% caused by food intolerances. I was on codeine contin (12 hour release codeine) twice a day for five years, just to be able to sort of function, I was in such excruciating pain. Now I know that lectins (especially gluten, rice and egg) will cause the...
  8. Ursa Major
    My grandmother died of stomach cancer when my mother was 20 years old. My mother had all the same symptoms as me, and died of liver cancer when she was 66. I hope I caught it early enough to not end up like them. I've been gluten-free for two and a half years now, half the time to get my risk down to normal (I had celiac disease symptoms for nearly 50...
  9. Ursa Major
    My youngest daughter had the blood test when she was 15, and because it was negative (high negative, but still negative), she refused to try the gluten-free diet. She insisted that the negative blood test 'proved' that she didn't have a problem with gluten, and that was that. Despite the fact that she had all the symptoms of gluten intolerance! So, I ordered...
  10. Ursa Major
    The celiac disease tests are notoriously unreliable on children under six years old. Just because the test was negative doesn't mean that your daughter doesn't have celiac disease. But yes, even if she has non-celiac gluten intolerance she can have malabsorption. My youngest daughter (she is 16) doesn't have the 'official' celiac disease genes, but when tested...
  11. Ursa Major
    Is your son still consuming dairy and/or soy? Dairy can cause behavioural problems and constipation, and could be a problem for him. He also sounds like he might have Asperger Syndrome (which could also be helped by taking casein out of his diet, as well as soy, on top of having eliminated gluten).
  12. Ursa Major
    Your problem is very likely a lack of vitamin K (and eating wheat will NOT be helpful). Here is a link to find out which foods contain vitamin K. You may need to take some vitamin K supplements for a while, until your blood clots normally again. Open Original Shared Link
  13. Ursa Major
    Hi Jerry, good to see you back, and hearing you are doing well! I can't believe that your twin brother is still, after all this time, stubbornly holding out. I guess he likes being in pain. I can't believe it has been a year, time just flies by.
  14. Ursa Major
    That is excellent! Those drugs are worse than useless, anyway, they cause heart attacks and strokes. The triglycerides are really the one and only thing to be concerned about, and those really dropped!
  15. Ursa Major
    Yes, especially the blood test for the antibodies. If gluten is not causing an autoimmune reaction, then your body will not produce the antibodies. The negative blood test shows that you've been doing a good job being gluten-free, and that you have healed as a result of being gluten-free. If you now decide that maybe you don't have celiac disease, and...
  16. Ursa Major
    I am glad you had a good time, it sounds just fabulous. I did a cruise two years ago, and had the same awesome experience, even with my many intolerances. They really try hard to make you safe so you can enjoy yourself without worrying about food.
  17. Ursa Major
    You are obviously gluten intolerant. You don't know if you had villi damage before you went gluten-free. But if you did, it is healed by now. If you have 'classic' celiac disease, you will destroy your villi again by doing the gluten challenge, inevitably resulting in illness and malabsorption of essential nutrients. But even if your villi won't be affected...
  18. Ursa Major
    Children's villi heal faster than adults. After three months gluten-free it could take more than a year of eating lots of gluten before she MIGHT have destroyed villi again to be able to get a positive biopsy, even though it is still unlikely. One month on gluten will be way too little time. If you give your child gluten again you will just make her ill...
  19. Ursa Major
    I agree, dairy and soy can really hinder healing, and may also be lifelong intolerances in addition to gluten. If you haven't eliminated those two, you may want to do that, it might make all the difference. Also, have you made sure of everything around being gluten-free? Does he have his own toaster? Is his play-dough gluten-free? What about his shampoo...
  20. Ursa Major
    You know, one cracker a day may not be enough for a positive biopsy. The recommended amount is four slices of bread a day. But of course, even one cracker a day will keep her sick, since even one crumb will make most of us very ill. And obviously, one whole month is a long time to purposely keeping a toddler ill, when you know how to make her well. Why...
  21. Ursa Major
    You know, being a worry wart, being anxious and unhappy........ those are VERY common celiac disease symptoms right there! Plus, maybe she is so used to low-level stomach pain that she thinks it is normal, and is therefore not telling you. When I was her age, I had no energy at all and had to force myself to have 'fun' and to keep up with my siblings....
  22. Ursa Major
    In adults it is more likely that other issues might be found with a biopsy (I still wouldn't do it myself, though). In a two-year-old it isn't too likely. If she wasn't responding positively to the gluten-free diet, I would still pursue finding the cause. But with her amazing response to the gluten-free diet, I don't think any other tests are needed. If...
  23. Ursa Major
    I agree with several of the suggestions here. It is a good idea to call ahead of time and talk to the manager, to see if they will make it work for you, and to find out if they actually care for their patron's safety. Call several restaurants, so you can suggest which ones your guests can choose from. If you say, "I have food restrictions, these are the...
  24. Ursa Major
    That is excellent. And you can tell your doctor that his information is outdated! It is now recognized that 33% of the general American population has celiac disease. It is also suspected that around 80% of people have a gluten intolerance (which most doctors wouldn't believe, of course). Good for you for going with your instincts and making your son well...
  25. Ursa Major
    IBS doesn't 'have' symptoms, rather it is a bunch of symptoms. Therefore, it isn't really a valid diagnosis, as it is caused by 'something'. An irritable bowel has a cause, which needs to be figured out, so it can be relieved. It could be celiac disease, or crohn's, or colitis (which all respond well to a gluten-free diet). It could be caused by intolerances...
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