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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    One more thing: Invest in a good travel food container - we bought a pair of Ms. Bento food kits (zojurushi?) one for me and one for my son. They can easily hold an entire meal (enough for two!) and keep food hot and cold for several hours. Our extended family has lots of gatherings so now I bring our own food to eat and a dish to share. We packed our...
  2. Cara in Boston
    My son was diagnosed at age 5. Suddenly I was acutely aware of how many people are (seemingly) constantly offering him food. It happened everywhere we went. He is a smart boy, but shy so he would just shake his head or say "no thank you." But then they would PERSIST. Adults! "C'mom, its ok, have this cookie, I've never met a kid who says no to a cookie...
  3. Cara in Boston
    All my son's IgA tests were perfect - he only tested positive on the IgG tests - which it looks like your daughter did not have. If my son had been only given those tests, we would never have found out about his celiac disease. Luckily, his doctor was concerned about his gliadin IgG and TTG IgG and went ahead and ordered a biopsy. He had extensive damage...
  4. Cara in Boston
    I was very concerned about my 5 year old having a biopsy because it sounded so invasive and kind of a big deal. He had never even been in a hospital (other than when he was born) and I tend to worry about everything. It turns out it was REALLY no big deal. He actually had a great day - they made it fun and relaxing (for him - not so much for me!). My...
  5. Cara in Boston
    I bought coconut oil for my son's sensitive skin and now the entire family uses it. It is light, smells good, all natural, and has other benefits/properties that make it great for moisturizing skin without using harsh chemicals or additives. We use it for everything, body, hands, lips, etc. Cara
  6. Cara in Boston
    Our last two big parties we hosted we did: BBQ pulled pork or chicken sandwiches (had regular buns and Udi's gluten-free buns) chips and dip potato salad green salad rice salad (just used my regular pasta salad recipe but subbed in rice) lots of dessert choices (about 1/2 were gluten-free . . . rice krispee treats, coconut macaroons, gluten-free...
  7. Cara in Boston
    We go to "All Can Eat" bakery in Randolph, MA frequently and love it. It also does not outwardly advertise that it is gluten-free so they get a lot of people in for coffee that don't NEED to eat there. What I love is that they also serve traditional breakfasts (eggs, pancakes, etc.), lunch (pizza, chicken nuggets, etc.), and dinners that are safe for us...
  8. Cara in Boston
    Since my son (6) was diagnosed 9 months ago, we have VASTLY improved our lives. I tested positive too, and just feeling better has made a big difference (didn't even know I had anything, just thought I was getting old and tired.) Since our home is basically gluten free, we eat more meals at home, spend more time cooking as a family, eat a much healthier...
  9. Cara in Boston
    If she was having Kraft mac and cheese, yours was probably closer to "real" than hers . . .
  10. Cara in Boston
    My 6 year old also does not get many symptoms. His main symptom is bad behavior which is sometime hard to tell . . . is he just being bad or is he being "gluten" bad? Over time, he has become more sensitive to even smaller amounts. The only symptoms I have noticed is a rash/irritation around his mouth (like chapped lips) and smelly gas. We basically...
  11. Cara in Boston
    My 6 year old had some "inconclusive" blood tests so we were sent to a pediatric GI for further testing. He did the genetic test and my son was found to have a "very low" risk. That doctor said he did not have celiac disease. We then went to a celiac specialist at Children's Hospital of Boston and since she couldn't figure out why his initial blood tests...
  12. Cara in Boston
    I think I read somewhere recently that behavior change is now the #1 symptom in kids when first diagnosed. The MD doesn't think he has had it long (we don't know what triggered it). We knew the behavior was unusual when it became clear that he simply had no control . . . no consequences mattered, thing he enjoyed now just made him angry, etc. The weird...
  13. Cara in Boston
    My son's blood panel was "inconclusive". He was negative on all the IgA tests (the ones usually given for celiac) but high on the IgG tests. The pediatric GI we were referred to told us he DID NOT have celiac (based on his blood test and the genetic test) and that I had read too many "magazine articles." While we were waiting on test results I had made...
  14. Cara in Boston
    I make a big batch of homemade mac and cheese (Ancient Grains Quinoa Pasta) and then freeze it in individual portions. One of my sons and I are gluten-free, everyone else is not. This makes it easy to make a quick lunch or snack. I frequently pack it in my son's lunchbox thermos. Just take it out frozen, pop it in the microwave, put it into the thermos...
  15. Cara in Boston
    I would meet up with them for drinks after dinner. Now, after almost a year gluten free, I don't mind watching other people eat delicious food. I would not have been able to do that just a few months of being gluten-free. Cara
  16. Cara in Boston
    I've never heard of something removed from the diet causing issues. It is more likely something different that he is eating that just happens to be in some gluten-free products. I did notice that the amount of fiber we were eating went way down when we went gluten-free (most gluten-free "substitute" products don't have much fiber or even nutrition . . ...
  17. Cara in Boston
    My MD originally told me all first and second degree relatives of someone with celiac disease should be tested. She then correct that to all first degree (regardless of symptoms) and any second degree relatives with any symptoms should be tested. Your daughter has symptoms and a family history of autoimmune disorders. She should be tested. Make sure her...
  18. Cara in Boston
    All first degree relatives need to be tested. All second degree relatives need to be tested if they have any symptoms. Majority of people with celiac disease have no symptoms at all. Are you sure your MD is a "celiac specialist"? My 6 year old was diagnosed last March (blood test and biopsy). He has never had a GI symptom in his life. He had a behavior...
  19. Cara in Boston
    Start the diet right away. There are lots of "regular" foods (most actually) that are safe (meat, dairy, fruits, vegetables, nuts, rice, beans, etc.) that don't cost extra and are available at a regular store. We still buy gluten-free bread and pasta for my son (6) but that is really about it. Now, at dinner, instead of making store-bought rice pilaf...
  20. Cara in Boston
    My nutritionist gave us this advice: First, replace the obvious contaminated items (pasta strainer, toaster, wooden cutting board and wooden utensils.) Things that go into the dishwasher and are non-porous should be fine. If you use a toaster oven, you can continue to use it, just put your bread on a piece of foil so it doesn't touch the toaster. You...
  21. Cara in Boston
    When my son tested positive (blood) for celiac and I started learning about it, I quickly realized that I had all the symptoms of it and the things I had been to the MD for in the past 6 years could all be explained by celiac disease (dizzy spells, heart palps, GI issues, headaches, numb fingers and toes, etc. etc.) It was a relief to finally figure it out...
  22. Cara in Boston
    My son (6) had positive blood tests on two markers (only the IgG ones . . . weird, I know) and GI #1 said he did not have Celiac since all IgA tests were negative and he had no symptoms. Since I already had an appointment set up with a Celiac specialist, I kept it, can't hurt to have a second opinion and original MD had no explanation for why his blood test...
  23. Cara in Boston
    I do a fruit smoothie and and a handful of nuts every morning and was surprised to find I am fine until lunch time. I really pack my smoothie (banana, mango, frozen berries, couple of handfuls of fresh baby spinach.) I usually use almond milk or coconut milk and some fruit juice as the liquid. Sometimes I add a scoop of greek yogurt if I'm feeling like...
  24. Cara in Boston
    My son was diagnosed at age 6. He was an average/picky eater and within weeks he completely changed. He will eat/try anything. He even LOVES food he used to complain about (same recipe, different kid?) It is not like he slowly grew out of it, it was seemingly overnight. He is the best eater in the house now.
  25. Cara in Boston
    Haven't tried the Betty Crocker cake mix or cookie mix, but the CHOCOLATE BROWNIES are fantastic. Waaaaayyy better then the gluten-free brownie mix from Trader Joe's. They are as good (or better) than regular brownies. Cara
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