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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    The blood tests are all likely to be negative, but don't let that stop you from trying out the gluten-free diet. He is so young. If you find you need an actual diagnosis later (school?) you can try a gluten challenge then, when he can communicate his feelings better. Perhaps one of the tests was a genetic one? While that won't give you an answer, it...
  2. Cara in Boston
    Can you come to Boston? We had a wonderful experience at Children's Hospital with my 6 year old son. His doctor (Dr. Weir) works p/t with patients and is a Celiac researcher the other time. He did not have typical symptoms and she figured it out. They follow up with a support group and nutrition classes too. When it looked like he might test negative...
  3. Cara in Boston
    A positive TTG test would be enough for me to put my child on a gluten-free diet. There is something going on and waiting for damage to start before treating it just doesn't make sense to me. Adding your family history and there is even more reason not to wait around. I have celiac disease and one of my two sons has it. I'm worried that I may never...
  4. Cara in Boston
    Both my son and I tested positive (blood) for celiac. That alone was not enough for an actual diagnosis. For my son, age 6, I really wanted to continue with the testing so that if he has it, I have the doctor's support for things like school, summer camp, college dorm, etc. He may need "proof" of his condition in order to get special services. Also...
  5. Cara in Boston
    If you are gluten-free when you see your doctor (even for a short time!) all the tests (blood, endoscopy, etc.) could be inaccurate. If you think you want to be tested, you need to resume a normal diet (full of gluten) right now. You can also skip the testing and just do what makes you feel better . . . Cara
  6. Cara in Boston
    We just went through the testing process with my 6 year old son. The most annoying part was the waiting (first blood test in December, final diagnosis in April) and the fact that I had to continue feeding him a regular diet even though we were pretty sure what the outcome would be. I also didn't really want to do the scope with him but I'm glad we did...
  7. Cara in Boston
    My son is 6 and was just diagnosed. My two hopes for him are that by the time he gets to college there are more choices for gluten-free beer and that he eventually meets a nice celiac girl so they can settle down and live a happy gluten free life together. Now I can ammend that to meeting a nice girl like you. I would keep these items on hand: gluten...
  8. Cara in Boston
    We tried to do the same thing - go right to the good stuff so my 6 year old doesn't get turned off before we even get started. We like: Udi's bread Knick .....(whatever it is) pizza crusts Udi's Cinnamon Raisin bagels Food Should Taste Good Sweet Potato chips chex cereal Ancient Grains Quinoa pasta (didn't even notice a difference) Pamela's baking...
  9. Cara in Boston
    The tantrums you describe sound EXACTLY like the shocking behavior we suddenly saw in our 5 year old last fall. That is what (along with a stomach ache) brought us to the doctor in the first place. He has no other symptoms so I imagine that if he gets glutened that will be our first clue. He's only been gluten-free for about a week so I don't yet know...
  10. Cara in Boston
    I feel like autism is related to gluten somehow. Many parents of autistic children find that keeping them gluten free helps tremendously. My son (6) was just diagnosed with celiac. He has been screened for autism three times (toddler, preschool, Kindergarten) because he was showing some early signs of it and he has a cousin with Aspergers. He was delayed...
  11. Cara in Boston
    My son has not had D since he was in diapers. Back in November he was complaining of daily stomach aches at home and at school. To be honest, I sort of ignored him because I thought he was just being dramatic. When his teacher called to let me know they were happening at school, I took him to the doctor. At just about the same time, we also saw a behavior...
  12. Cara in Boston
    There is no guarentee that 4 weeks will be long enough to make the test accurate. Since it may not even be accurate in the first place, you are going through a lot and could still end up with no answers. I know how you feel - it is hard. I have been obsessed with gluten since November when my son tested positive. I dream about it - when it is not keeping...
  13. Cara in Boston
    It is my understanding that you should have your blood levels checked regularly (every 2 years?) to make sure the gluten free diet is working. That is what I was told. If it is working, your levels should all be within range. If not, you are unknowingly consuming gluten and need to figure it out. Cara
  14. Cara in Boston
    We have two celiacs in the family. My MD told me my other son (so far negative) should have a full blood panal done every other year or sooner if any symptoms develop. It can pop up at any time. Cara
  15. Cara in Boston
    I think that you know your daughter best and are probably right and you know how to make her well. My son is 6 and I knew he was going to go gluten-free anyway, no matter what the outcome, but I decided to do the scope so we could try to get a solid diagnosis. We don't need one now (his school is wonderful and will gladly honor any request from a parent...
  16. Cara in Boston
    Got the results today which were positive. Glad to know that since it was kind of hard justifying going gluten free when he really has no symptoms any more. He has been gluten-free for a week now and seems to be adjusting well. Time to (finally) go clean out the cabinets - I've been putting it off just in case. Food pantry, medicine cabinet, spice rack...
  17. Cara in Boston
    When people (in laws) try to cook for my son, I tell them thanks for the effort, but the DOCTOR insists that he only eat food I prepare or pre-packaged gluten-free food. If they continue to insist (which they do) I just say he gets his blood checked regularly and if there are any reactions, I need to be able to trace it to the exact food and I can only do...
  18. Cara in Boston
    I was only gluten free for 10 days. I guess I was pretty good at it because my blood test went from "absolutely positive" to perfectly fine. My Dr. said eat gluten (4 slices whole wheat bread/day) for three months then come back to be re-tested. Since it is different for everyone, I have convinced him to at least check (blood test) after 6 weeks to see...
  19. Cara in Boston
    My symptoms did not return until day 8 . . . Cara
  20. Cara in Boston
    Personally, I would stick with the gluten free diet and you can always try a challenge later when you son is old enough to really describe what he is feeling. (5-6 years old?) You don't have to wait until he is a teenager. By then, you might have a new doctor who is more enlightened and open to giving you a diagnosis based on what is really going on....
  21. Cara in Boston
    I was very worried about his endoscopy because I had just had one and although it was fine, I was trying to imagine him in the room with all the equipment and being nervous. My husband ended up taking him since my other son was home sick. He said the staff was WONDERFUL about keeping him busy and occupied while they did all the preliminary tests. They...
  22. Cara in Boston
    It seems to be different for everybody. I was only gluten free for 10 days, but it was enough to change my blood test from positive to negative. My doctor (at BIDMC Celiac Unit here in Boston) told me to eat gluten (equiv. of 4 slices whole wheat bread daily) for 3 months. I tried to do some research to see if it really takes that long and couldn't...
  23. Cara in Boston
    I have no actual experience with this but I did read somewhere that it can happen. Your grill can become contaminated if you toast bread on it (hamburger buns?) or if previous meat had a marinade that contained gluten. Cara
  24. Cara in Boston
    Thanks for the responses. We will get the results next week but we have started him gluten free already. We were VERY impressed with Children's Hospital. He actually had a great time (who knew a medical procedure could be so fun?) I highly recommend them.
  25. Cara in Boston
    Do not go gluten free until you have the endoscopy done. Even a week can be enough to heal enough that your result could be a false negative. I would schedule it as soon as possible so you can go gluten free as soon as possible and start feeling better. Cara
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