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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    For mac and cheese, I make it homemade with Ancient Grains Quinoa Pasta. My guy (diagnosed at age 5 so I feel your pain) likes Udi's bread products (sandwich bread, hot dog buns, bagels,) and really, I think they are pretty good too. Goldfish - closest we could find were Schar's cheese bites crackers. Pretzels from Snyders or Glutino. Bagel chips...
  2. Cara in Boston
    With two positive blood tests and all her symptoms, it seems pretty obvious she has it. If your doctor will diagnose her based on that, you do not need to go any further. Some doctors require a positive biopsy to give a diagnosis. The biopsy could also come back negative - because the damage is not extensive enough or the doctor simply missed it....
  3. Cara in Boston
    Definitely take this as good news. My guy was not diagnosed until age 5. He went to Early Intervention for speech delays, had enough "odd" tendencies (arm flapping, little eye contact, easily agitated, etc.) that he was tested for ASD every single year - but never quite fit the description. After a sudden behavior change (tantrums, meltdowns, etc.) we...
  4. Cara in Boston
    We started out just finding substitute foods that tasted like his old favorites. Now, he is open to trying new things and he is the best eater in the house. The only other kid in his entire school who has celiac is a little girl with Down's. They've been in the same class since Kindergarten (now in second grade) and they really look after each other -...
  5. Cara in Boston
    None of the tests will be useful if the kids are not eating gluten. The amount of time you have to eat it before testing varies. My doctor told me 6 months. Even then, testing can be difficult, especially in young children. The tests themselves are not difficult - both my boys actually had a great time when they went in for their endoscopies - it is just...
  6. Cara in Boston
    your children need to be tested too.
  7. Cara in Boston
    You may have been tested for Celiac, but not given the full panel of blood tests. When my son and I were diagnosed, I told my siblings to get tested (they are all in different states.) Of the 5 people tested, not one got the full panel. They were all given just the IgA tests and they were all negative. In my son's case, all his IgA tests were negative...
  8. Cara in Boston
    To find a doctor in your area, check to see if there is a Celiac Support Group or something similar and ask members for recommendations.
  9. Cara in Boston
    You have enough evidence to convince a well informed doctor to give you a diagnosis. Good luck finding that doctor. You will need a doctor's note for schools, summer camps, etc. You may want to try for testing later when he is older, but if he can't make it through a gluten challenge, that should be enough proof. So far we haven't had to provide the doctor...
  10. Cara in Boston
    In the meantime, start the diet. No need to wait.
  11. Cara in Boston
    Resume eating gluten and go to the doctor for a blood test. I definitely sound like you are intolerant. If you don't feel you need an "official" diagnosis, stop eating gluten 100% - be careful of even the smallest amounts and cross contamination. I had many of your symptoms. Most were gone within a week, some took a little longer. Now if I accidentally...
  12. Cara in Boston
    Our experience at MGH was not good. We LOVE the hospital - all our primary care doctors are from there, I delivered my second child there, etc. However, after Joe's initial blood screening, we went to the pediatric GI there and got terrible service. The doctor (Katz?) was condescending when I questioned his diagnosis (or non-diagnosis) "You've read too...
  13. Cara in Boston
    She very clearly has celiac disease. Even if the biopsy is negative, she should still go gluten free. Think of the diet as the "final" test. Trust your instincts. You may think you and your husband don't have an issue with gluten but you could be surprised. I tested positive after my son was diagnosed and we started the diet together. I thought I...
  14. Cara in Boston
    My son (diagnosed at age 5, he is now 8) only tested positive on the IgG tests - all his IgA tests were normal. The doctors were confused. One said he didn't have it (no symptoms, normal IgA) but we took him to the celiac clinic at Children's Hospital Boston and they were concerned about the IgG tests. They did a biopsy and it was positive. If his...
  15. Cara in Boston
    For many people with gluten sensitivity, their reaction to it does indeed get worse the longer they are off gluten. They will react to smaller amounts and their symptoms will be more severe. However, if they do not have a sensitivity, they will not notice a change at all. It only happens if your body is sensitive in the first place. Giving up gluten will...
  16. Cara in Boston
    We had a similar experience with my son (at age 5) and a tennis program run by the city. I filled out a registration form which clearly asked about dietary restrictions, I sent a written note with him, AND I spoke to the site director. It was a tennis program and food was not a part of the program. One day in the final week of the program he came home...
  17. Cara in Boston
    To me, a positive test is a positive test - even borderline. My son shot up three inches within weeks of being gluten free (diagnosed at age 5) We hadn't even noticed that he had fallen off his growth curve because he was tall for his age to begin with. If you decide to go forward with more tests, you have to be sure you get someone who knows what...
  18. Cara in Boston
    I can totally understand you being happy and excited about him having a positive test result. It means you can start getting him healthy. In the first few months you will be BOMBARDED with people giving you advice about his diet ("my neighbor cured herself by eating a little bit of wheat every day . . "). Get ready to just smile and nod while you know...
  19. Cara in Boston
    Don't want to lecture you or anything but your blood tests indicate you have Celiac Disease which is more serious than just a simple food intolerance. Your word choices like "gluten light" and "If I cut out gluten" and "going to try the diet" make me concerned. You need to be 100% gluten free - all the time - from now on. No cheating (special occasions...
  20. Cara in Boston
    You are getting great info here - everyone's advice is right on. Just want to re-state: the blood tests are pretty clear that she has celiac. If the biopsy comes back negative, DO NOT let your doctor tell you she doesn't have it. It just means damage was not found. The tricky thing with her being asymptomatic is that it will be harder to tell if...
  21. Cara in Boston
    After three months being gluten free, 4 weeks back on gluten might not be enough to get accurate blood tests. Just know that a positive result means she probably has it but a negative result means the didn't detect it - not that she doesn't have it. (Does that make sense?) Don't let a negative result sway you into allowing gluten back into her diet. ...
  22. Cara in Boston
    I'm guessing that you will get a positive result back. The damage would need to be pretty extensive for it to be visible. If for some reason it does come back negative, don't assume he doesn't have celiac. A positive blood test is a positive blood test. Is he feeling better gluten free? Sometimes it gets worse before it gets better. Cara
  23. Cara in Boston
    You are already getting bad information - you should not have been told to stop eating gluten before the testing is done. Even a couple of weeks gluten free is enough to allow thing to heal (in some people.) Resuming a gluten filled diet may not cause any measurable damage for several months. Certainly have it done (but start eating gluten again immediately...
  24. Cara in Boston
    Was he starting to feel better during the three weeks he was gluten free? I know we had very mild symptoms (none really, except behavior) before my son was diagnosed at age 5. Now, if he gets "glutened" accidentally, he gets all kinds of sever GI issues. He is much more sensitive after being gluten free. If you think gluten is his problem (don...
  25. Cara in Boston
    Best of luck to you. My son, who ended up having a positive biopsy, only tested positive on his IgG test - everything else was normal. Glad you are continuing testing. At our hospital, you can only take a cab home if you have another responsible adult with you. I was completely loopy after mine - it would have been impossible for me to give the cab...
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