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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    My son was sick off and on for MONTHS and we were going crazy trying to find the source of gluten in our house. Finally, his GI did more blood tests and found them to be negative so we began to consider other causes. Turns out he had Lyme from a tick bite almost a year before. I happened to take a picture of the rash he got because it was odd. Since it...
  2. Cara in Boston
    I did the same thing as you when I was first diagnosed . . . got a bunch of gluten-free cookbooks from the library. The ingredient lists were crazy long and included all kinds of flours . . . it felt more like a science experiment than a recipe. I found many more "friendly" recipes in Paleo cookbooks and even Low Carb cookbooks . . . I use Pamela...
  3. Cara in Boston
    Just wanted to add two things: Everyone in the family needs to be tested. (That is how I found out I had it too.) My older son is supposed to be tested every two years, sooner if we see any symptoms. He had some weird tooth enamel issues and the doctor felt certain he would test positive but he was negative on both the blood tests and the endoscopy...
  4. Cara in Boston
    I have not seen gluten-free lasagna noodles but we have figured out a few alternatives. I ended up with what we call, "lasagna bake" . . . I make my regular lasagna filling, but layer it in the pan with cheese and gluten-free macaroni or other small pasta. Our favorite WAS Ancient Grains Quinoa pasta, but lately we've been trying the new gluten-free options...
  5. Cara in Boston
    There is a skin rash associated with gluten called dermatitis herpetiformis . . . google it and see if the pictures look familiar. Our primary care doctor did the initial screening. When two in the family had positive blood tests, she referred us to a GI. From there we got diagnosed. An allergist cannot diagnose Celiac. You may have an allergy...
  6. Cara in Boston
    We noticed changes right away - especially in mood and behavior - and then, over time, other things improved that we didn't even notice were problems. Increased appetite, better sleep, more energy, etc. He shot up three inches and his hair got thick and curly. Weird. He was diagnosed at age 5. I was so stressed in the first few weeks, trying to...
  7. Cara in Boston
    My son was negative on all tests except the IgG tests. He was not deficient in IgA. Our first doctor said he didn't have it because his IgA tests were fine and he was average height and weight and had no GI symptoms. However, he could not explain why my son had such high IgG numbers (lab error?) and by that time, I had also tested positive for celiac so...
  8. Cara in Boston
    Glad you have answers. Be sure to get everyone else in the family tested.
  9. Cara in Boston
    I wouldn't automatically assume you do not have celiac, but since you are going gluten free anyway, it doesn't really matter. My blood tests were positive (I was tested because I had symptoms for years and my son tested positive) so I went gluten free. In a short time period (2-3 weeks) my blood tests all came back negative. (no big surprise, I was...
  10. Cara in Boston
    Your second doctor is just plain wrong. A negative biopsy only means damage was not found . . . not that it is not there. There could be lots of reasons they didn't find damage. The biopsy only CONFIRMS a diagnosis of Celiac, it does not rule it out. There is no such thing as a "weak" positive. A positive blood test is a positive blood test....
  11. Cara in Boston
    How about a crock pot/slow cooker? I cook 2-3 meals a week in one and it couldn't be easier. Once you have some good recipes collected. Assemble everything in the morning, dinner is ready when you get home. Cara
  12. Cara in Boston
    We live in Boston and go to Cape Cod every summer for a couple of weeks. I am always surprised how many more options we have for safe dining . . . you'd think in a city as big as Boston there would be plenty. On the cape there are lots of grocery stores that carry everything we need, a fantastic seafood place that has gluten-free fried clams, a breakfast...
  13. Cara in Boston
    Our box has a variety of treats and snacks. Sometimes the class is having a "healthy" snack (like during testing, they hand out granola bars) so I make sure to have some snack foods available too. Our box has m&m's, snickers, skittles, doritos, pretzels, applesauce, KIND bars, and Lara bars. (The school is not nut-free). We also have GoPicnic meals...
  14. Cara in Boston
    My son had the genetic test and was found to have a "low probability" . . . this led the doctor to conclude that he DID NOT have celiac disease (no classic symptoms, target size/weight, positive and negative blood test results) His doctor could not explain the positive blood tests. Said it might be a "lab error." By that time, I had tested positive for...
  15. Cara in Boston
    I think I may have responded to another one of your posts, but I have experience with this as well. My son had ZERO classic symptoms. At age 5 his behavior took a sudden turn from "spirited" to horrible. We were having tantrums over the slightest frustration, tantrums that would go on forever. No consequences mattered, no rewards mattered, it was irrational...
  16. Cara in Boston
    When I was researching what to include in our 504 plan I came across several examples that included a "shelter-in-place" plan. Most schools have one for emergency situations, but they wouldn't necessarily include food that would be safe for your child. I didn't think too much about it (frankly, it sounded a bit excessive to me and I didn't want to look...
  17. Cara in Boston
    not super high in protein, but can she eat peanut butter? My older son loves peanut butter smoothies. I do plain or vanilla coconut milk, a frozen banana or two, a big scoop of peanut butter, sometimes I add some ground flax seed.
  18. Cara in Boston
    Sorry you are still waiting. From start to finish, our testing took almost 4 months. Since Joe's #1 symptom was ATROCIOUS behavior, it was a very long 4 months. I feel fortunate that he was diagnosed as a child. He seems to have a much better attitude about food in general. He would rather feel good than risk getting sick by trying a questionable...
  19. Cara in Boston
    My son (now 3rd grade) was diagnosed as a first grader. We've had only positive experiences with both his schools. I sent in a info sheet on Celiac Disease that included our "rules" for what he can eat. He is EXTREMELY responsible about what he eats so I don't have to worry about him "cheating" or saying something is safe just so he can eat it. After...
  20. Cara in Boston

    ARCHIVED Doctors In Boston

    Cara in Boston replied to AJC's topic in Doctors

    MGH has recently opened a Celiac Clinic so BIDMC is not the only choice in Boston. Here's a related link on some doctors at BIDMC: https://www.celiac.com/forums/topic/94726-celiac-specialists-in-boston/
  21. Cara in Boston
    We go to Boston Children's Hospital Celiac Center and I feel very fortunate we have access to such doctors. When we were first going through testing with my son at age 5 his results were confusing. Our first doctor would not order further tests because he had no symptoms, was tall, and only had positive blood tests on the IgG panels. By that time, I had...
  22. Cara in Boston
    A positive blood test is a positive blood test. Considering she also has several symptoms (my son had zero symptoms) it is pretty clear. That they didn't find anything on the biopsy just means the didn't FIND anything. Not that it was not there. I had a positive blood test and negative biopsy. All my symptoms cleared up by being gluten free....
  23. Cara in Boston
    My son was still positive after 6 months (diagnosed at age 5) and the doctor said "as long as it is going down, we are successful." He was negative at his one year test and has been since. I wouldn't worry too much about it. It WOULD NOT be going down if she was still eating gluten. My blood test were negative after just a few weeks being gluten free...
  24. Cara in Boston
    My doctor (Celiac Center at BIDMC here in Boston) said 3-6 MONTHS for a gluten challenge. It is different for everyone, some will show a measurable reaction before that, some won't. If you get a negative result don't assume it is because you DON'T have celiac disease. I gave up after 6 weeks and just decided to be gluten free. Cara
  25. Cara in Boston
    You need to get the full panel of blood tests before you assume you are negative. My son tested positive on all the IgG tests but negative on the IgA (even though his levels are fine). He also tested "negative" (low probability) on the genetic test. His biopsy was positive for celiac and his symptoms all vanished when he went gluten free. If he had...
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