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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    I agree. DO NOT CHANGE his diet until all testing is complete. The MD might want to do a biopsy - if blood is positive or negative - and you have to be eating gluten to get the most accurate results. Keep his diet "normal" until you have done all testing - and then try the diet (even if he tests negative) as that can sometimes be considered an additional...
  2. Cara in Boston
    All first degree relatives should (at least) have their blood screened for celiac - regardless of symptoms. This would be your parents and siblings and any children you have or may have. Second degree relatives should be tested if they have any symptoms (Aunts, Uncles, cousins, etc.) I find it odd that people think that it is OK to continue to eat gluten...
  3. Cara in Boston
    If you are open to eating more meat, I would get some books from the library about the Paleo Diet. It is grain free and dairy free - but sort of centers on meat (along with vegetables, fruits, nuts, etc.)
  4. Cara in Boston
    Just wanted to add: I knew his name sounded familiar . . . He wrote a book with Melinda Dennis (the nutritionist I mentioned). The book is very helpful. Open Original Shared Link Cara
  5. Cara in Boston
    I do not have any personal experience with him as I saw another doctor. However, if you think you may have celiac disease, BIDMC is the place to be. I was very impressed with the entire clinic. Not only is the care top notch, but it is well organized. No long delays for testing, appointments are on time, etc. They have a FANTASTIC nutritionist who...
  6. Cara in Boston
    Check out the meals from GoPicnic. They are sort of like "lunchables" but shelf stable and they have several gluten free options. They are small and compact so they are easy to travel with and keep in your car or office. Not super healthy, but not too terrible. We use them for travel and my son keeps one at school in case he forgets his lunch. Aside...
  7. Cara in Boston
    Each truck usually carries different things. The truck at our beach has different items then the truck that comes to the ball field. I usually go and check it out (without kids) and make a list of possibilities. Then I check them out on line and keep a list of a few safe items. We don't get treats often but every once in a while it is fun/special. Hood...
  8. Cara in Boston
    Ask the director to contact the other gluten-free parents. She probably can't give you their email addresses, but she can give yours to them. They would probably have some good advice and insights for you. I know the one other gluten-free parent at my son's school asked me to contact her so she could find out how I handle field trips, classroom parties...
  9. Cara in Boston
    I had positive blood and negative biopsy. All my symptoms went away when I went gluten free. My son has celiac and his doctor just laughed and shook her head when I told her my doctor would not diagnose me based on my biopsy. She said there are LOTS of reasons why the biopsy might appear negative and it DOES NOT mean you don't have celiac disease...
  10. Cara in Boston
    My blood test was positive and my biopsy was negative. My doctor technically diagnosed me with "gluten intolerance" since he said I needed a positive biopsy for a celiac diagnosis. My son (7) has celiac, and all my symptoms went away once I was gluten free. It seems so silly that the doctor cannot diagnose me with celiac disease. Biopsies can be wrong...
  11. Cara in Boston
    This makes no sense. Your biopsy would very likely be negative after being gluten free (things can heal very fast in some people) and then your doctor (who obviously does not know enough about celiac disease) may refuse to diagnose you with celiac. Or, perhaps your doctor just wants to monitor your healing and if nothing is found, he will (rightfully...
  12. Cara in Boston
    You need to consume a regular gluten-containing diet for 4-6 MONTHS before undertaking testing. It is different for every person, but even after 6 months, you could still test negative after being gluten free for so long. The symptoms return long before the antibodies are measurable in the blood. Cara
  13. Cara in Boston
    We love those pouches of applesauce - easy and only one ingredient. My son also likes lara bars (have you seen the new small, fun size?), low fat string cheese, hummus (check amazon for the individual, shelf-stable pouches), KIND bars (healthyish, but not really low fat), dried fruit and dehydrated fruit (Trader Joe's), fruit smoothies. Cara
  14. Cara in Boston
    We had Tacos every night for the first week . . . no joke. I felt like I couldn't figure out what to make for dinner. Turns out, most of our favorite meals were already gluten free (with just a few tiny tweeks) and I just had a mental block about what to do. The transition is SO MUCH EASIER to do in the summer, when you can grill meats and veggies every...
  15. Cara in Boston
    Bring someone with you to talk to the doctor when you are done. I was a babbling idiot after the sedative wore off so I have no idea what I said to the doctor and not really sure what he told me . . . I had to call back the next day to get information/instructions, etc. Cara
  16. Cara in Boston
    I think I got them from Amazon but their website also has a store. I'd be happy to send them to you if you think you could use them. Just send me your mailing address: myboytom@yahoo.com
  17. Cara in Boston
    I have two small rubber bracelets from www.STATkids.com that we no longer use. They are kind of small - they fit my son when he was 5 but seems like it would fit 3-6 year old. Plain red rubber (like the livestrong bracelets) with large white print "GLUTEN FREE". They came in handy when we were first diagnosed. My son was quite shy and if needed, he...
  18. Cara in Boston
    Your symptoms certainly sound like they could be celiac. If you are going to pursue testing, you need to resume eating gluten ASAP and continue a regular diet until all testing is complete. My blood tests went from very positive to negative with just two weeks being gluten free. Everyone is different, my son took over a year to get a negative blood test...
  19. Cara in Boston
    I am very certain that my celiac was triggered by my second pregnancy as well. I had zero symptoms before that - never even went to the doctor except for my annual physical. After that, it seemed I was complaining to the doctor every month about some weird and unusual symptom. When they never found anything, I just assumed this is what it felt like to...
  20. Cara in Boston
    We do lots of smoothies for breakfast. I keep frozen bananas on hand and bags of frozen berries. Blend them up with milk (sometimes coconut milk), add a little greek yogurt for protein, sometimes a few handfuls of fresh baby spinach and breakfast is done. If you add a tablespoon of ground flax or chia seeds, it is really filling. Favorites: Peanut...
  21. Cara in Boston
    Not having the most common gene does NOT mean you don't have celiac (or that you won't develop it at some point). The gene test is just another "clue" for doctors to follow when trying to diagnose a patient. It does not rule out celiac or diagnose celiac. It just tells you if you have the genes that most celiacs carry. There are lots of exceptions...
  22. Cara in Boston
    My son needed the biopsy because his blood tests were unclear (some high, some normal) and the doctor explained that if there is damage, it is good to know the extent. Then there is something to compare if you need a later endoscopy (to see if the diet is working) My son had almost no symptoms and zero "classic" symptoms. I really wanted a firm diagnosis...
  23. Cara in Boston
    Sometimes the reaction is immediate, sometimes it takes days to feel it, sometimes there is no reaction at all. I know this doesn't help you figure it out, but don't rule it out just because you didn't feel anything. When I first tried the diet (2 weeks) I was feeling much better. My doctor decided he wanted to do an endoscopy so he told me to resume...
  24. Cara in Boston
    While you are waiting to finish the testing, start the ball rolling with your children. You had a positive blood test. All first degree relatives need to be tested as well - even if there are no symptoms. You know how long it takes to sort all this out, the sooner you start, the sooner you can get answers for your children. If any are positive...
  25. Cara in Boston
    If you are still waiting for the celiac blood results, DO NOT START THE DIET yet. If the results are positive, the doctor will probably want to perform an endoscopy to determine if there is any damage (he/she may want to do this even if the tests are negative). Changing your diet before the endoscopy can compromise the results. Take this "waiting" time...
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