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seezee

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Everything posted by seezee

  1. seezee
    For flour I really like Domata Living Flour. I order online and have found it in Health food stores. You can pretty much sub it one-to-one with wheat flour For McDonald's my daughter only eats the ice cream sundae. For meals -- what works best is meat, vegetable, potato, rice, we aren't so crazy about ready made gluten-free products. My family...
  2. seezee
  3. seezee
    You may want to follow up on the celiac with a pediatric GI specialist. They would be the ones to make an official diagnosis. Usually, the followup to a positive celiac blood panel is to one of these. I'm not sure where you live but you may want to try to see a GI specialist who is an expert in celiac. In our case, my daughter was 10 when she was diagnosed...
  4. seezee
    Some things we do. I found a gluten-free flour that I can substitute 1-1 for wheat flour and I can't tell the difference. It takes trying a bunch, but it's worth it. (I couldn't cope with recipes that have 6 types of flour and then xantham gum.) My family bought me a stand mixer which means I can make cookie dough in five minutes. I always make a...
  5. seezee
    Lots of regular candy is gluten free. It keeps pretty well. Different companies have different policies on how they provide that information, but checking out most companies websites will give you the information you need. If you are in Boston, I suggest joining the Childrens Hospital Boston celiac support group. They send a big welcome basket / care package...
  6. seezee
    We go to Children's Hospital Boston and they have been great. Be sure to get a GI doctor who specializes in celiac. We see Dr. Dascha Weir there and she is really nice. If the bloodwork is positive it's unlikely to be something else.
  7. seezee
    She was 10 and had a positive blood test and biopsy. The doctor did the blood test as a family screening (my nephew has it) and because her weight did not increase from her 9-year check up to her 10-year check up even though she grew several inches. Other than being alarmingly thin and somewhat tired she didn't seem to have many other symptoms. At the time...
  8. seezee
    I think if it is affecting his ability to focus on school than it's OK for you to insist that the accommodations he requires be in place. If that means a 504 then that's what it means. My daughter was diagnosed about a year and a half ago and at first I felt really uncomfortable demanding/insisting. I am a pretty polite, soft-spoken person, but teachers...
  9. seezee
    when my daughter was diagnosed through a family screening her pediatrician said that in many cases in her practice she has seen that many people who originally said that they have no symptoms will feel much better and find out they actually did looking back
  10. seezee
    Is it a public school? You may want to think about an individual health plan or 504 plan. We had terrible problems last year with our private school in making sure that the classroom desks were cleaned. We ended up leaving and so far this year things have gone extremely well. An internet search for 'celiac 504' leads to lots of resources. My daughter is now...
  11. seezee
    We had the same trouble - nutritionist and doctor said this is frequent occurrence for kids new to the diet. You replace most grains with rice. My daughter takes fiber supplement and milk of magnesia when she asks for it. It's starting to get better but it messed up her colon and that takes a very long time to get better.
  12. seezee
    You might want to check for Lyme disease too. My dad was in horrible pain that they could find no cause for with that. He ended up in the hospital for two months. We had a neighbor who had horrible knee pain from Lyme too. I think it's a blood test. (Daughter has celiac which is why I read posts) s
  13. seezee
    Is it possible for you to send the biopsy and lab tests to another GI doctor who specializes in celiac. I found that some doctors aren't too knowledgeable. There are a number of celiac disease centers at hospitals around the country. It seems that you could possibly send the lab work there or maybe talk to someone else. I can't quite get the logic of making...
  14. seezee
    We use mixes for bread usually gluten-free pantry but there are about a dozen different ones. I think there are some good recipe books too that you can check out. Most of the mixes I get online because it's about half as much as in the market. I suggest trying them out first if you have a whole foods nearby and then getting them in bulk online.
  15. seezee
    If you think a video might be helpful there are some good ones here: Open Original Shared Link This is a good video from the Mayo clinic: These are some resources I found on cross contamination which is the hardest part for people to "get" Open Original Shared Link Open Original Shared Link Open Original Shared Link with...
  16. seezee
    yes - Open Original Shared Link
  17. seezee
    I read that celiac is more common in Downs Open Original Shared Link Maybe given the other symptoms it could make sense to do further testing or try a gluten-free diet.
  18. seezee
    10 days seems long to get results. It seems they can take a quick look for preliminary results. It seems like a reasonable request. Surgeons etc. don't always realize how hard this is. I think in their point of view this is routine and don't understand how extremely stressful this can be.
  19. seezee
    When we did the endoscopy/biospy we got in due to a cancellation a month before our scheduled appointment. My daughter was ten at the time. Everyone was super nice to her and gave her lots of praise and attention. We went first thing in the morning. She was pretty anxious and we were allowed to stay with her until the anesthesia kicked in. The doctor was...
  20. seezee
    Whole foods offers a gluten-free tour and they told me that I can return anything I don't like.
  21. seezee
    I guess you should listen to the doctor if he thinks you should take him off gluten for a couple of weeks. The convention is that you continue to eat gluten until they complete all the tests, but if he is vomiting like that maybe it's more urgent. You can ask the pediatrician for the test results and post them here too. There seem to be people who can tell...
  22. seezee
    My daughter has a friend whose mother (Jessica) owns a pizza/Italian restaurant. Jessica says people often ask if they can provide gluten-free foods and pizza, but they aren't too sure how to do that safely because they have a small kitchen and worry about x-contamination. Are there any resources for this I can send to her? Are there other good resources...
  23. seezee
    Most little kids put their hands in their mouths all the time, so I just avoid hair and skin products with wheat, rye, barley or oats. Although, things that you rinse off like shampoo at the gym which we use after swimming, I don't worry about so much. As a side note, a few months ago I went to the beauty store to look for gluten free hair care products...
  24. seezee
    If you are looking for flour to make really good cookies, cakes, and muffins, I have tried a bunch and really like one called Domata, Open Original Shared Link - they sell it at the Natural Food Exchange in Reading (I think I saw you live in Massachusetts) - they have a few other brands there that I haven't tried since I stopped at that one. I also like...
  25. seezee
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