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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    If your other son has been eating gluten free as well, all the tests will come back negative anyway. You need to be eating a fair amount of gluten daily for 3-6 months for a chance at an accurate test (and even then, there could still be a false negative.)
  2. Cara in Boston
    I was told that my negative son needs to be tested every two years regardless of symptoms. MD said bring him in earlier if he has any symptoms before that. (Younger son has celiac disease - biopsy and I had a positive blood test but negative biopsy) Cara
  3. Cara in Boston
    My son and I both have celiac so when we go to a family event I always bring several things so I know I have something to eat. I'll usually bring a homemade mango salsa (that has avocado and black beans in it so it has some value if it ends up being one of the few things we can eat) and a salad (potato, caprese, etc.) and then I bring our own buns for the...
  4. Cara in Boston
    While this was not our first time eating out post-diagnosis, it was our first SUCCESSFUL time eating out. What a pleasure it was to be able to just sit down and order breakfast without asking tons of questions. My gluten-free son (6 years old) was thrilled to order whatever he wanted (pancakes) and when he found out all the beautiful cookies, pies,...
  5. Cara in Boston
    Mine felt very physical (like the stuffing description). I would find myself physically shaking my head to try and clear it. . . as if I could shake it away. Also had problems with memory (did I eat lunch? what did I have?) and do dumb stuff like go out and get the mail, and then absent-mindedly place it in the fridge when I went there next to get...
  6. Cara in Boston
    I would not trust a negative biopsy after being gluten-free for a month. My test results (blood) went from postitive to negative in just 10 days. My biopsy (after this brief time gluten-free) was negative too. Since my son was diagnosed and I have a previous positive blood test and I had multiple symptoms, I continued with the gluten-free diet and all...
  7. Cara in Boston
    This is a really weird one - and I couldn't find that much information related to it . . . For the past several years I've had to get new white t-shirts every couple of months because there would be yellow stains under the arms. Not slightly dingy laundry stains, but dark, yellow stains. Every shirt, within weeks. I know I never had this problem back...
  8. Cara in Boston
    It has been a couple of months now and I wonder why I haven't lost any weight. Should be easy since I can't cheat by picking up a donut with coffee in the morning, or enjoying a big mac when the kids get a happy meal. At parties, I am limited to what I can enjoy, and it is usually just the salad and fruit . . . I should be about 20 pounds lighter! But...
  9. Cara in Boston
    Hang in there. The first few weeks are the most overwhelming. We had tacos for dinner about 4 nights a week because that was the only thing I could think of (duh! turns out that MOST of the meals we had been eating were close to being gluten-free anyway. Just took me a while to come to my senses.) I found that I had all these people and appointments...
  10. Cara in Boston
    My younger son was diagnosed with celiac disease in March (strange blood results, positive biopsy). I had a blood test that was very positive, but my endoscopy was fine. I've had lots of symptoms that have resolved since going gluten free. My son had very few symptoms but (I guess) he is doing fine on the diet too. My older son (8) has tested negative...
  11. Cara in Boston
    Google GoPicnic and check out the gluten-free, shelf-stable, meal options. They look like adult "lunchables" only with healthier choices. We use these when we travel and need to avoid the fast food places at the rest stops along the way. Cara
  12. Cara in Boston
    All good book suggestions already. Check your library before buying them. Another great book (still learning after reading ALL the others) is "REAL LIFE WITH CELIAC DISEASE, Troubleshooting and Thriving Gluten Free" by Melinda Dennis and Daniel Leffler. I ended up buying this one because it is so comprehensive - so I can share it with extended family...
  13. Cara in Boston
    Make the biopsy appointment as soon as you can and have them put you on the "on-call" list. Our location had frequent cancellations (kids get a fever or a virus before the procedure and have to cancel) and we got in early when someone else cancelled.
  14. Cara in Boston
    Try to stick it out. It felt like forever while we were waiting, but when we were finally done, it didn't seem that bad. I am VERY glad we waited. Having a correct diagnosis is going to be so helpful as we move forward with schools, camp, eventually college, etc. Without it we would have always wondered if we got it right and if the GFD was worth all...
  15. Cara in Boston
    I've been drinking Blue Diamond Almond milk lately and don't seem to have a reaction to it . . . anyone know about CC with their milks? Cara
  16. Cara in Boston
    Just want to add: If you tested positive, you should have ALL your children (and other first degree relatives) tested. It does run in families and does not always have obvious symptoms. Cara
  17. Cara in Boston
    When my son gets "glutened" my husband refers to him as a "glunatic" because his behavior is so bad. Our usually "high-spirited" 6 year old will have tantrums and meltdowns at the smallest provocation, everything is "boring", etc. etc. He's no angel when he's felling good, but you can definitely tell when he is in control and when he simply cannot help...
  18. Cara in Boston
    My son (6) was diagnosed in March after several positive blood tests and (finally) a positive biopsy. The waiting between tests was so hard for me as I knew that continuing to feed him gluten was causing him harm. I also tested positive (blood) but then had a negative biopsy. In any case, we are both 100% gluten free and now that it has been a couple...
  19. Cara in Boston
    You did the right thing. I pretended to eat/enjoy something that someone made for me at a neighborhood gathering and now she makes it (and more!) every time we get together. I think it is wonderful that she is going out of her way to include me, but now I have to find a way to tell her I really can't eat it. I think I will lie (again) and say I have...
  20. Cara in Boston
    I would be so upset. This is our first summer dealing with celiac. I completely trust my son's Kindergarten teacher to keep him safe, but not the various people he will come in contact with at all the different summer programs he will be attending. Just to be extra safe, I bought a rubber bracelet that say "Gluten Free" on it for him to wear when he...
  21. Cara in Boston
    Glad it all worked out. We are visiting family for a week this summer - our first trip (longer than a weekend) since we were diagnosed. I am planning on having our favorite foods delivered to our destination in advance (amazon? not sure) so we don't have to pack so much. For the car ride (and any emergencies) we will have a bunch of the Go Picnic meals...
  22. Cara in Boston
    My son (6) and I went gluten free in March. We started out buying all kinds of gluten-free junk food (even though this was not part of our previous diet) and sort of went crazy. Then we just calmed down and got back to eating regular food. I was surprised at how gluten-free we already were - most dinner menus didn't have to change at all. I did need...
  23. Cara in Boston
    My son (6) tested positive on all the IgG tests and negative on all the IgA tests. The doctors seemed to think his results were odd. My MD looked at his results and said he could NOT have celiac but we took him to a specialist at Children's anyway. They ended up doing a biopsy and it was positive for celiac - very positive. He has ZERO symptoms other...
  24. Cara in Boston
    I get tons of gluten-free cookbooks from our library and read them daily . . . Very surprised at the number of OBVIOUS recipes that just take a regular dish and sub gluten-free ingredients. I even had one (for kids) that had instructions on how to make a grilled cheese sandwich (using gluten-free bread, of course)! Well, duh, I could have figured that...
  25. Cara in Boston
    I have a question about Trader Joe's: Some of their nuts say "processed in a plant with wheat, etc." and some don't . . . Since that info is not required, does NOT having it on the label mean it is safer(er)? Or, are they just inconsistant with their labeling? I've also noticed they have changed many of their products from "gluten free" to...
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