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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    I asked our doctor (celiac specialist) the very same question. Two of the four of us in our home are gluten free. She said there are no health risks to eating gluten free as long as you are eating healthy. Since a lot of Americans get some of their vitamins from enriched flour products and fortified breakfast cereals (not from gluten, but from the things...
  2. Cara in Boston
    I find that after I am sick (or the kids are sick) that there seems to be an imbalance in the intestinal flora. Maybe try finding a good gluten-free probiotic? Also - coconut water (not coconut milk or a sugary coconut drink - just plain coconut water) is FANTASTIC for staying hydrated. Better than OTC electrolyte solutions and sugary Gateraid or other...
  3. Cara in Boston
    If the tests were done when you were off gluten, they are useless. If you are wanting a shot at accurate tests, you need to be eating sufficient gluten for a sufficient amount of time (my MD said 4-6 months, but they all seem to differ). Even a short time gluten-free - a week - can alter the test results. You don't need a diagnosis to eat gluten free...
  4. Cara in Boston
    You can have non-celiac gluten intolerance and have all the symptoms but test negative. When my son was diagnosed (blood and biopsy) I realized I had all the symptoms and was tested too (whole family was tested). My first blood tests came back positive, but when I went to see the GI (celiac specialist) he re-did the test and it was negative. My endoscopy...
  5. Cara in Boston
    I have no idea if it is different for kids, but as an adult, I was told to go back on gluten for 4-6 months (this is from a doctor at the Celiac Clinic at BIMC here in Boston.) I had only been gluten free for about two weeks. Two months may not be long enough and 10 days is just silly. Any chance you can go to a doctor in your area who has more experience...
  6. Cara in Boston
    Honestly, I would start by getting a new, better informed doctor. To suggest a GFD before testing is just WRONG, WRONG, WRONG. You need to be tested first (blood tests are not invasive) and depending on those results you can decide on further testing or just give the diet a try to see if it helps your symptoms. If you go on the diet first, all future...
  7. Cara in Boston
    Right when I was getting tested, I noticed my hair was thinning at an alarming rate and I had a bald spot developing right at my temple where my part ended. After testing and going gluten free, my other symptoms started going away (GI issues, headaches, joint aches, fogginess, etc.) immediately but the hair loss continued. It wasn't until about 3 months...
  8. Cara in Boston
    One of my son's favorites is a corn tortilla with refried beans and salsa . . . sometimes cheese. I just sandwich two together and then cut it into wedges like a pizza. Sometimes we put the salsa on it (but it gets soggy), sometimes we put the salsa in a small container to dip the wedges. Cara
  9. Cara in Boston
    Just wanted to add: Don't count on other adults to be able to really read labels correctly and know all the different things to look for. We had a problem with a camp counselor (actually it was the Director). A parent brought in a special snack (graham crackers) and was handing them out to the kids. My son told (reminded?) the director he couldn't eat...
  10. Cara in Boston
    We got "Eat Like a Dinosaur" from the library and enjoyed it. I may even buy it from Amazon. Another one I liked (not a kids book, but not hard) was "Everyday Paleo". We are not a paleo family, but I tend to like those cookbooks more. Some of the gluten-free ones are just silly (regular recipes that just sub in gluten-free products . . . like Grilled...
  11. Cara in Boston
    My son was diagnosed in Kindergarten. He is very good about speaking up. Here's some of the steps I took: Get the doctor's note on file with the school right away. That way, if you have any problems with them following your directions, you can take action. Our school was great and just wanted to learn about it and how to keep him safe. Met with...
  12. Cara in Boston
    We make this all the time with gluten-free beer. Weber makes a special dish you can use instead of a can - it works great. Bought it at amazon.
  13. Cara in Boston
    I don't know if I will be that helpful since I am speaking from my own (adult) experience but . . . I was on a prevacid-like medication (2X a day) for over a year for GERD (it helped, but not completely) before being diagnosed with gluten intolerance. Within a week of being gluten-free I was able to stop taking it and have not had any symptoms since then...
  14. Cara in Boston
    I think that sounds great. I would also add something like, "let me go get something that is safe for me to eat so we can all enjoy this celebration together!" and then go get some treat from your desk. I think people will feel less weird about enjoying the cake if you are at least eating something . . . Cara
  15. Cara in Boston
    Just wanted to share our experience because some is similar to yours. Last year my son (6) with almost zero symptoms was tested for celiac disease. His blood tests came back weird. All IgA tests were perfectly normal (including total IgA), his Gliadin IgG and TTG IgG were both elevated. MD sent him to Pediatric GI for further testing. Since it looked...
  16. Cara in Boston
    This is from my celiac support group: Jelly Belly Recall 2/27/12 - Jelly Belly Recalls Bags of Deluxe Easter Mix Due to Undeclared Allergen - Wheat Product Identification: 2.7 ounce bags of Peter Rabbit Deluxe Easter Mix
  17. Cara in Boston
    It sounds like he is still being glutened pretty regularly. I would examine EVERYTHING that could possibly be the cause and keep a diary (just note bad days on a calendar) so you can spot any patterns . . . especially if other people are caring for him. Perhaps there is something at Grandma's house that she thinks is gluten-free but really isn't. So...
  18. Cara in Boston
    I would also suggest asking your doctor to give you a blood test to see how you are doing on the diet. If your numbers are elevated, then you will know you have been getting gluten from somewhere. My son has very few symptoms so we rely on periodic blood tests to see if we are doing everything right. If your numbers are up, that will back up your complaint...
  19. Cara in Boston
    Two of four in our family are gluten free, but I only cook gluten-free meals. At first we found pretty good gluten-free substitutes for our favorite foods - this was important to get our gluten-free 6 year old on board. After almost a year, we still use some of them but have been moving toward more naturally gluten-free foods. I put on 10-15 pounds...
  20. Cara in Boston
    Also keep in mind that just because you are negative now, it does not mean you won't develop celiac disease later. I was diagnosed at age 44 and have had symptoms for only about 5 years. I only got the test because my son was diagnosed with it. My younger son and I tested positive, my husband and older son tested negative. I am fairly certain my husband...
  21. Cara in Boston
    We bought a couple of "ManGrate" grill toppers for our home grill (there was a groupon for it so it was a bargain) and after seeing them, I am totally going to buy one more to keep for when we visit other people and want to grill something on their grill. They are long and narrow, so they don't take up the whole grill. Very heavy iron. Anyway, they would...
  22. Cara in Boston
    After my younger son was diagnosed, the entire family got tested. I tested positive but my older son tested negative. He is 9 and has always had something up with his teeth - despite eating pretty healthy and brushing daily, etc. When his front teeth came in, they were sort of tannish and discolored - uneven colored and thin looking. The dentist seemed...
  23. Cara in Boston
    I think the concept of cross-contamination is the hardest to grasp. My husband even thought the word "contamination" was extreme and exaggerated . . .because it is not a "poison" or anything, it is wheat! Well, it is a poison to me and one of our children so he had to start thinking of it as such. Even the teachers at school thought we were being extreme...
  24. Cara in Boston
    From what I understand, if you had a positive Ttg, then, at the very least, you are gluten intolerant and should be gluten free. It does not matter what the biopsy says. After my son was diagnosed and I realized that I had all the classic symptoms, I was tested too. My blood came back positive (TTG IgA and Gliadin IgA) and I was told that I had it too...
  25. Cara in Boston
    My son had one at age 6 and had such a good time, his older brother was jealous. We were at Children's Hospital so they were all just fantastic. He was impressed with the video game selection. Also, he got to pick whatever "flavor" he wanted for the gas. He was up and about within an hour and was perfectly fine the rest of the day. Older son (9) finally...
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