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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    I have a feeling that people on this list have a lot of different lunch bags. We have the snack-sized "packit" and while it does keep things very cold, it sweats too much and gets everything else in the backpack damp/wet. How do you keep it dry? It is not one of my favorites. My other favorite food storage/transport item is the Mr. Bento by Zogirushi...
  2. Cara in Boston
    The size is a little awkward and we didn't love it until I bought new food containers. When zipped, the lunchbox is squarish . . . like a 6 inch cube of space. (visualize a tall, square tissue box) The square containers from Fit N Fresh work great, as does the square set from Rubbermaid Lunch Blox. Our older, rectangular containers just didn't work. Neither...
  3. Cara in Boston
    We've been using a "wrap-n-mat" in my son's lunchbox for a couple of years and that worked well to provide him with a clean surface for his lunch while at school (can't count on the tables being clean since they are just wiped down with a damp rag between classes). But half-way through third grade, my son didn't want to use them anymore. Taking the extra...
  4. Cara in Boston
    What would lead your doctor to think he does not have celiac? He had symptoms. His symptoms improved when gluten was eliminated. His blood test is positive. What more does your doctor want? The "lets wait until there is measurable damage even though you know you feel better gluten free" does not make any sense to me. The test ranges are there...
  5. Cara in Boston
    My younger son and I are gluten free. Older son and husband are not. I only cook/bake gluten free and our kitchen is mostly gluten-free. We do keep bread products, crackers, and cereal in a different area for the two "regulars". The older son eats whatever he wants when he is out of the house. We have a system for keeping gluten crumbs to a minimum...
  6. Cara in Boston
    Schar makes a little cheese cracker that is pretty good. Slightly larger than goldfish but similar in flavor. They are diamond shaped. We've only seen them (for a couple of years) at our Rite Aid pharmacy (weird) and even though our grocery store carries lots of Schar products, they don't carry the cheese crackers. https://www.glutenfreemall.com/images...
  7. Cara in Boston
    Just first degree relatives should be tested right away. Your daughter could have inherited it from her father, so your twin does not necessarily need to be tested. In our family, my younger son and I are positive, my husband and other son are negative. It is very clear that celiac (undiagnosed) runs in my husband's family (none of them will get tested...
  8. Cara in Boston
    I am so happy she is diagnosed and can finally start to feel better. If you stick to the diet 100% (start as soon as the biopsy is done) she will be amazed at how much better she feels. Do not feel guilty about missing the signs. For months, my husband and I just thought our 5 year old had turned into a total brat and it was somehow our fault. We never...
  9. Cara in Boston
    Not sure if they can tell how long you have had it. I know my symptoms all started with my second pregnancy. Any stress on the body can trigger celiac and pregnancy is certainly a stress. Coincidently, it is my second son that also has celiac. Don't forget that all your first degree relatives need to be tested as well - even if they don't have any...
  10. Cara in Boston
    If you have been diagnosed with Celiac, all your first degree relatives (children, parents, siblings) should be tested - even if they have no symptoms at all. Your kids should be tested every two years . . . sooner if they begin to display symptoms. Celiac can develop at any time so a negative test a few years ago does not mean you don't have it now. ...
  11. Cara in Boston
    Perhaps you don't need to bring it from home. I know our Children's Hospital is in a busy neighborhood with plenty of stores within walking distance. You could zip out while the procedure is being done and pick something up to put in the freezer. Or pack those push-up things unfrozen and put them in the freezer when you arrive. They should be solid in...
  12. Cara in Boston
    Keep in mind that if the biopsy is negative, it only means that damage was not found . . .NOT that your child does not have Celiac. It can confirm a celiac diagnosis but cannot rule it out. If you have completed all medical tests, (which are not 100% reliable in children) you should try the diet anyway and consider it the "final" test. If after 3 months...
  13. Cara in Boston
    Glad you have some answers and can now focus on getting her healthy. Anxiety was one of my major symptoms. I thought it was just caused by me having such weird/scary symptoms and the doctors never found anything wrong . . . I began to think I was going crazy. It definitely went away after being gluten free, however it was more gradual than immediate. ...
  14. Cara in Boston
    In our house 2 have celiac and 2 do not. I only cook gluten free (so my kitchen and all baking utensils are safe) but my older son and husband still eat gluten when they are out of the house. The only "gluten" food we keep in the house is bread . . . in a separate bin and they have to make their sandwiches on a specific tray to catch all the crumbs. Wait...
  15. Cara in Boston
    I would not even trust this doctor to do the endoscopy (NOT COLONOSCOPY) to diagnose you as she clearly does not know anything about Celiac. Wrong test in the first place and you will not have any damage after being gluten free for 2 years. After I was gluten free for two weeks, my doctor wanted me to eat gluten for 6 months before undergoing an endoscopy...
  16. Cara in Boston
    My youngest had it done at age 6. I was a nervous wreck - had to send my husband with him. He actually had a great time. The staff at Children's was wonderful. He got to play video games and joke around with the doctors and nurses. He doesn't remember anything after picking a "flavor" for the gas. He was up and about within an hour and seemed to have...
  17. Cara in Boston
    My doctor said six MONTHS, so I know the answer can vary. It is different for different people. My blood test went from positive to negative within two weeks of being gluten free. My son was still testing positive after 6 months of being gluten free.
  18. Cara in Boston
    Do not change your diet until you know you are done with testing. Even a "trial" diet can cause blood tests to be negative for months.
  19. Cara in Boston
    I made my husband take him because I was a nervous wreck. It turned out to be no big deal. Hardest part of the day was him skipping breakfast. They put him under before the IV so all he remembers is playing video games, hanging out with the fun doctors and waking up to ice cream. He was PERFECTLY fine within an hour of the procedure. When I had mine...
  20. Cara in Boston
    Any change is hard until you get the hang of it. We have been gluten-free for almost three years now and it is like second nature. I do recall, in the first few weeks, we were eating tacos about 3 times a week because I didn't think I could come up with any gluten-free meal ideas. Seems silly now. You, your husband, and your other children need to...
  21. Cara in Boston
    Some of the GoPIcnic choices have only a few things in them that my kids like . . . and it is usually the dessert that they don't like. You can also put together your own "meals" using those disposable food storage containers from Glad and Rubbermaid. We buy the same hummus or meat sticks that GoPicnic have and add our own stuff. Schar crackers usually...
  22. Cara in Boston
    Some people like to have the endoscopy done even though they know their child has celiac disease based on the blood tests. This gives them a starting point for future healing . . . something to compare future endoscopy results with. That being said, we've been gluten free for three years. He gets regular blood tests and we watch him for symptoms. Since...
  23. Cara in Boston
    Our 6th month check up was still positive but since it was lower than the original test our doctor was not at all concerned. As long as it is going down. If she wasn't gluten free it wouldn't be going down and the symptoms would not be gone. I'm sure you are doing a great job.
  24. Cara in Boston
    I pack a ton of shelf-stable snacks when we travel so that things that don't get eaten don't spoil. We like the GoGoSqueeze applesauce, fruit leather, KIND bars, Lara Bars, Glutino breakfast bars, etc. Individual packs of gluten-free pretzels (Snyders), schar crackers, individual packets of hummus, stuff like that. I always bring a few GoPicnic lunches...
  25. Cara in Boston
    If you can find a good dermatologist with experience with celiac, I think they can biopsy the DH rash and give you a diagnosis based on that. (Not sure about that as this is not a symptom we experience.) Bottom line, it is very likely your son has an issue with gluten based on his symptoms and family history. Even if it is another autoimmune issue,...
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