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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    You are getting good advice here. Trust your instincts. Doctors are frequently wrong. I would also check to make sure your doctor does the RIGHT tests. Don't just assume he/she knows what those are. It is already clear your doctor does not know much about celiac disease if he has not already tested your child. (symptoms + relative with it -= get...
  2. Cara in Boston
    Since your biopsy is already done, there is nothing keeping you from beginning the gluten free diet right away. Even if your biopsy is negative, you might see great results on the diet. Think of it as the "final" test . . . Cara
  3. Cara in Boston
    I agree. Find out if you were "allergic" or if you have a gluten intolerance (celiac). They are very different. If you are intolerant and have been gluten free for a while, the antibodies may not show up in your blood for months. Your tests could all come back negative, even though you are still sensitive. Symptoms may not show up right away...
  4. Cara in Boston
    We had a similar situation and it did in fact, turn out to be LYME. Joe was diagnosed in March, went gluten free, felt better (it was like we had a new kid!) and several months later he started having symptoms again. His GI and I went through everything in his diet. We stopped eating out, we stopped eating any processed foods that although gluten-free...
  5. Cara in Boston
    Our school is about 220 kids. My son and one other little girl are the only kids with celiac. They happened to be in the same classroom last year and have been kept together again this year. Although that is not very many, there are numerous other kids with food allergies and lots of kids with special needs (it is an inclusion school) so everyone has their...
  6. Cara in Boston
    We send in a placemat for our 7 year old to use in school. It is one of those "wrap-n-mat" thingies and at least I know his table surface is clean. I've watched the tables be cleaned and they basically just use a rag and wipe it all around - not actually cleaning it. I bought 5 mats (amazon) and send a clean one to school each day. We also made it...
  7. Cara in Boston
    I had positive blood tests and negative biopsy. I had already been gluten free for about 2 weeks prior to the biopsy. When my son was diagnosed with Celiac Disease and I started reading about it, I realized I had many of the symptoms. I was tested and my blood test was positive. It became very clear that I had it. When my biopsy came back negative...
  8. Cara in Boston
    In our house, we have 2 gluten free and 2 not. The only thing we have that contains gluten is cereal, bread, and pasta. For the cereal, we have special red bowls that they use. They rinse them themselves and use a specific sponge. After rinsing, they put them in the dishwasher with all the other dishes. If I see a red bowl left out (yes, sometimes...
  9. Cara in Boston
    These "cheese bites" from Schar are absolutely delicious: Open Original Shared Link Our grocery store carries the brand, but not these crackers. Strangely, I found them at our local drug store (Rite Aid) in their small (but apparently well stocked) gluten free section. They are smaller than a cracker, but slightly larger than a goldfish. They are...
  10. Cara in Boston
    We have been struggling for the past year - but mostly in the past 2 months - with my son still complaining of general symptoms (fatigue, stomach pain, joint pain) almost daily AND horrible behavior (tantrums, irritable, short temper) often. These are all typical of how he responds to accidental glutening and we have been going nuts trying to find the source...
  11. Cara in Boston
    I would make sure to have to doctor's note on file with the school anyway so you can address issues as they come up. Ours is a blanket statement saying the school should accommodate all reasonable requests to keep him safe. I think cross contamination could be a problem, but not a problem that couldn't be handled and still share a locker. I would be...
  12. Cara in Boston
    My doctor (at the Celiac Center at BIDMC Boston) said more like 4-6 months. Some people will test positive after 2 weeks, some won't until after 6 months. It is different for everyone. If you happen to test positive, you will know. If you test negative, it will NOT mean you do not have celiac disease. If you only get one opportunity to test...
  13. Cara in Boston
    Welcome to the board. The good news is that she is young and starting the diet early will make it so much easier. Imagine being a teenager and suddenly not being able to eat your favorite foods! When they are this young, you are completely in control of what your child is eating. Once you make the transition, it will be all she knows. They make gluten...
  14. Cara in Boston
    You will probably get lots of good ideas by reading about the paleo diet. It is grain free (so naturally low in carbs), AND peanut free. Just google something vague like, "Paleo Lunchbox" and you'll find all kinds of information. If you use a container with sections, you can send a variety of small food (cubed meat and cheese, cherry tomatoes, baby carrots...
  15. Cara in Boston
    Your doctor is wrong. Not eating gluten, even for a short time, can cause the tests to be falsely negative. Mine went from very positive to normal after just 10 days of being gluten free. My son, was still having positive blood tests after 6 months. It is different for everyone. But it is clear you doctor is not well informed. If he is wrong about this...
  16. Cara in Boston
    I had a positive blood test and a negative biopsy. My doctor officially diagnosed me with "gluten intolerance" since my many, many symptoms all cleared up once I went gluten free. My son has celiac disease - which is what prompted me to get tested in the first place. I am certain I have it, the biopsy just didn't find it. The treatment is the same...
  17. Cara in Boston
    After three years of being gluten free you need to be eating gluten for MUCH longer than a few weeks before being tested again. My doctor (celiac researcher and specialist) told me 6 months after only 2 weeks of being gluten free. I would imagine that after three years, you would need quite a while to develop any measurable damage. Your tests will come...
  18. Cara in Boston
    It would be helpful to know what blood test they did. See if you can get a copy of your results. If it was a full celiac panel, and it came back positive, AND you are feeling better on the gluten free diet then it is likely that you have celiac disease. Not having anyone in your family with it is not a big deal. Many, many celiacs go undiagnosed (or...
  19. Cara in Boston
    Boston is getting better. Many local places offer gluten-free food (and actually train their staff to keep it safe) and on a recent trip to Fenway Park, my son and I enjoyed a hot dog on a gluten free bun. They had a separate Gluten Free cart that sold hot dogs, cookies, brownies, etc. We also have a few bakeries that are 100% gluten-free in the area....
  20. Cara in Boston
    If you have a gluten sensitivity (celiac or intolerant) you will likely become more sensitive (more severe reactions) to even smaller amounts of gluten the longer you are gluten free. This is part of the healing process and your body is supposed to work like this. Here's how it was explained to me: Before gluten-free diet, your body was overwhelmed with...
  21. Cara in Boston
    We haven't done a formal plan yet as our school was very, very willing to just do whatever we asked. We added things like: He uses a placemat or clean lunch tray (that has gone thru the commercial dishwasher) at his lunch table even though he brings his lunch from home. (The tables are just wiped off with a damp rag between classes - yuck) No projects...
  22. Cara in Boston
    Some of the "gluten free" stuff in the GoPicnic lunches are gluten free, but processed in a facility that processes wheat. My son can't eat those items. I found some of the items sold separately (like the hummus) and other stuff (jiff single serve peanut butter, individual cups of tuna salad, etc.) All shelf stable. I put together my own "lunchables"...
  23. Cara in Boston
    No symptoms does not mean no reaction. Often the symptoms appear days later, or not at all (until the antibodies build up again over time.) Some people have immediate symptoms, some don't. Symptoms change over time and can even go away for months at a time ("honeymoon" period, typical in teens) It was once thought kids outgrew celiac because the symptoms...
  24. Cara in Boston
    I've never seen them for schools (or been offerred them . . .) but maybe they are GoPicnic lunches? We buy those for airplane travel . . . We can't bring them to school because the school is nut-free. Cara
  25. Cara in Boston
    Has this been posted already? A friend bought this for me at a recent BBQ and it was surprisingly delicious. Not exactly like a hard cider . . . seemed more like a cross between a hard cider and a wine cooler. Fruity (green apple) and light, bubbly and fun. Kind of a perfect summer adult drink. Open Original Shared Link Just thought I'd post...
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