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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    So your doctor wants you to eat gluten to make yourself sick so he can prove that gluten makes you sick? After a year and half, "a few weeks" may not even be enough to cause enough damage to show up on an endoscopy. And/or, the doctor could miss the damage that may (or may not) be there. You will likely get a negative result and it WILL NOT mean you...
  2. Cara in Boston
    My doctor told me 2 slices of wheat bread a day for 4 to 6 months . . . and even then it might not be enough. If you go through with it and your tests are still negative, it does not mean you don't have celiac. It means your doctor is uninformed and put you through this for no apparent reason. Regardless of the test results, will you do anything differently...
  3. Cara in Boston
    I agree. While a positive biopsy will indeed "comfirm" the diagnosis, a negative biopsy does NOT mean you don't have it. Don't let the doctor tell you otherwise. With your symptoms and blood test results, it is pretty obvious you should not be eating gluten. Cara
  4. Cara in Boston
    Can't comment on the poop issue (no experience there) but just wanted to reassure you. My son's numbers were only slightly lower when he was re-tested after being on the diet for 6 months. This completely freaked me out since my number changed to normal within weeks. The doctor assured me that it was fine and that some people just take longer. It was...
  5. Cara in Boston
    My son's blood test was negative but his biopsy was positive. My blood test was positive but my biopsy was negative. We are both feeling much better gluten free. You can push for more tests (sounds like maybe you didn't get the full panel the first time?) but really, those could come up negative and lead you to believe that gluten is not the problem...
  6. Cara in Boston
    As you change the way you cook and prepare food, your entire family will benefit - they will be eating healthier too! Get your children tested as soon as possible - even if there are no symptoms. Don't mess with their diets at all until testing is done. The diet takes a bit of learning at first, but once you figure out your favorite foods and alter...
  7. Cara in Boston
    The genetic test really doesn't give you much helpful information and in some cases, (my son) can lead your doctor to believe you DON'T have it. There are always exceptions, so having the common genes or not really doesn't mean much. My son's genes said "not likely" but his intestines said "absolutely". What tests did the doctor do after you were...
  8. Cara in Boston
    Be aware that if you have been eating gluten free, the blood tests will likely be negative. The antibodies will only be present if you are eating gluten. Sounds like you are on the right track, but maybe you are still accidently getting gluten. I had a set back early in the diet and began to question if I was on the right track. Turned out that there...
  9. Cara in Boston
    No problems at all until I got pregnant with my second child (age 38). I went from going to the doctor once a year (just for annual physical) to going in every few months with really random symptoms. (cardiac, neuro, GI, etc.) It got to the point where my doctor just thought I was making stuff up because nothing ever showed up on the many, many expensive...
  10. Cara in Boston
    I would definitely ask for a copy of your blood tests. Chances are very good that you did not get the complete panel of tests. Even if you did, a negative result does not rule out Celiac. Sort of, if it is positive, you know, but if it is negative, you should still keep looking. Same with the biopsy. It can be falsely negative for a variety of reasons...
  11. Cara in Boston
    Just wanted to add, I was told that as long as the autoimmune reaction was going on, a person with celiac is more likely to develop additional autoimmune disorders - some that will not resolve once you start the diet. Once you stop the reaction (eliminate gluten from your diet) your chances of developing more issues are back to that of the general population...
  12. Cara in Boston
    My son had no symptoms at all except behavior. When he had his biopsy, they found extensive damage, which surprised all of us since his vitamin levels were fine, he was above average for size, etc. He never even complained of feeling bad - BECAUSE IT WAS NORMAL for him to feel bad. Once off gluten, we had a totally different kid. Fun to be around, wanting...
  13. Cara in Boston
    Don't know about the allergy question but wanted to share that my biopsy was negative and it is very clear and obvious that I have celiac. After my son was diagnosed, I had my blood tested and it was positive. I also had all the classic symptoms, but just didn't know about Celiac to be tested before. I went gluten-free with my son and it was like a miracle...
  14. Cara in Boston
    It will all be fine and it does get easier. I did the same for my son (5 years old at diagnosis) . . . including making whatever they were serving (pizza, hot dogs, etc.) in advance and bringing it. We kept a pack of 4 frozen gluten-free cupcakes from Whole Foods in our freezer to use for parties. After a year, my son finally confessed that he really...
  15. Cara in Boston
    Lately we've had great service at Pinkberry. (yogurt, not ice cream, but close!). The frozen yogurt comes out of a machine and none of their flavors contain gluten so there is no danger of cc. If you want toppings, they have a list of what is safe and will take out a new container and new spoon to get your toppings (don't use the ones in the counter, they...
  16. Cara in Boston
    I think it is different for each person. My son had normal IgA tests and was only positive on the IgG tests. He had ZERO GI symptoms. Our only clue something was wrong was a drastic change in behavior. He didn't even complain of feeling bad, he just turned in to the devil. (age 5). His biopsy was very positive. My blood tests were the opposite. Only...
  17. Cara in Boston
    Well, you didn't get the full panel of tests, so you really can't rule out Celiac Disease. You may be IgA deficient (did they test total IgA?). My son is NOT IgA deficient but all his IgA tests were negative too. He had a positive on the IgG tests and a positive biopsy. When your doctor did the endoscopy, did he/she take samples for a biopsy? Even then...
  18. Cara in Boston
    It was a dramatic behavior change that took us to the doctor in the first place. Our 5 year old was suddenly having tantrums over nothing, struggling with the slightest frustration (socks won't go on!), and no longer enjoyed things that he previously loved. The change was overnight (seemingly). The actual diagnosis took months, so we sort of got used to...
  19. Cara in Boston
    Just revisiting this older thread. I too had Dr. Sheth because he was the first available. If you re-read my earlier post, the glowing recommendation is all about the clinic in general and the nutritionist. Cara
  20. Cara in Boston
    We had a set-back early on that was due to my B vitamin supplement. I kept cleaning and cleaning, but still had symptoms. When I finally discovered the problem, it was easy to fix. I had the cleanest kitchen in town. Did you already get rid of your toaster? You do need a new colander for pasta. We also didn't get around to changing my son's lunchbox...
  21. Cara in Boston
    I found the testing process to be very frustrating. It also took longer than I anticipated and it was hard to continue to feed my son gluten during the months it took to finally get him diagnosed. Please keep reading and learning about it and be aware that many, many doctors just aren't up to speed. Our first doctor wasn't and if I hadn't already read...
  22. Cara in Boston
    We had the test and based on the result, it led our original doctor to believe that my son did NOT have it. After we switched doctors and they did an endoscopy, he was found to be very positive. People with the genes don't always get it. People without the genes do get it. I'm not really sure how a test like that can be helpful. Cara
  23. Cara in Boston
    behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts. Original "know-it-all" doctor said he didn't have it because he was not positive...
  24. Cara in Boston
    My son and I are the only two gluten free in the entire extended family (although many others probably should be . . . ) and he is so sensitive that he cannot eat anything prepared in someone else's kitchen - even if no gluten ingredients are used. I usually cook a gluten free "Thanksgiving" earlier in the week to have at home with my immediate family and...
  25. Cara in Boston
    Yes, I agree. Once testing is done, regardless of the results, try the diet (strict - don't cheat just because it is only a test) and see if the original symptoms resolve. Also, double check to make sure you got the complete panel done . . . sometimes a test is negative, but if you didn't get them all, there will always be a question. Good luck. Waiting...
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