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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    Our school is nut free (not to the extent of yours) so lots of our favorite snacks are out. However, it is just one meal a day. I send his lunchbox full of fruits, yogurt, mini kebabs made from ham and cheese, meatballs, veggies and dip, hummus, hard boiled eggs, etc. Mostly foods that are naturally gluten free AND nut free. Since I bake with mostly almond...
  2. Cara in Boston
    If you go gluten free before the tests are done, and then you get a negative test, you will NEVER know if it is accurate or not. If you get a positive, you are lucky. Ds's blood was still testing positive after 6 months of being gluten free. My tests went from positive to negative after just 10 days. It is different for everyone. If you are going...
  3. Cara in Boston
    My 9 year old is three years into the diet and let me tell you, it does get easier. It is just a way of life. We barely even think about it now because it is second nature. At the time of his diagnosis, I tested positive as well, so we are gluten free together. It really helped to have the whole house gluten free. My husband and older son still eat gluten...
  4. Cara in Boston
    I thought all my symptoms were due to "getting old" . . . after being diagnosed (got tested only because my son was diagnosed) and going gluten free, no more aches and pains, daily headaches, brain fog, fatigue, etc. It was like I turned back time 10-15 years. Joint pain was not one of my major symptoms then, but now, if I accidentally ingest gluten...
  5. Cara in Boston
    slow growth is only one of the many, many, many possible symptoms. Your doctor is just plain wrong assuming that your child does not have celiac because this symptom is not present. We had the same first experience - first MD would not even do follow up tests on my son because he "wasn't sick" and looked "perfectly healthy" despite positive blood tests...
  6. Cara in Boston
    My son was 6 when diagnosed. We didn't notice his slow growth because he started out taller than average so he always seemed tall. In the year leading up to his diagnosis (when we first started noticing symptoms) he was off his growth curve, even though he was still average height. It took us 4 months to finish testing, even though I knew we were on...
  7. Cara in Boston
    We found the pre-packaged "lunches" from GoPicnic to be great for travel. They are shelf stable, small, and light. We had no problem getting them through airport security. Check them out, they have several gluten free options. My son even keeps a few at school and one in his backpack for "emergencies." You can also get cards to print in different...
  8. Cara in Boston
    Since the blood test for Celiac is a series of tests, maybe you were positive on some, but not all. Maybe the second lab did not do the full panel and therefore did not see the full picture. Of the 5 tests commonly given, my son and I had opposite results. Where he was negative, I was positive. Where I was negative, he was positive. We both have celiac...
  9. Cara in Boston
    We didn't have any problems with it either. I just had him strip down when he got home and take a long, hot shower. Don't forget to clean/trim fingernails either.
  10. Cara in Boston
    Yes, like the previous poster said, this test is just to see if your daughter has sufficient IgA levels to use the other tests. High or low (or average, in your case) does not indicate Celiac at all. If your daughter was low, then the following Celiac tests that rely on Iga (tTg IgA, DGP IgA, etc.) could return a false negative . . . which is why doctors...
  11. Cara in Boston
    a knowledgeable doctor would not have run blood tests on a person who has been gluten free for three weeks. None of those test results are valid. You had a positive biopsy and a positive response to the diet. You have celiac disease. The genetic test is NOT diagnostic. Some people with the common genes do not develop celiac disease . . . some people...
  12. Cara in Boston
    My guess is that you are not 100% gluten free. You are eating like a person who is avoiding gluten, but believe it is not entirely avoidable. It is. There are steps you can take - including packing your own food if necessary - to be 100% gluten free. When traveling, I eat in my room (food that I have packed) and then just get a salad or just drinks...
  13. Cara in Boston
    Yes - just repeating what has already been said. All first degree relatives of a person with confirmed Celiac Disease need to be tested every two years, regardless of symptoms. Test sooner if symptoms are present.
  14. Cara in Boston
    Clearly, your daughter has celiac disease. Every blood test is positive. You need a new doctor. Even if you take matters into your own hands and start the diet, she will still need follow up celiac care from a doctor who is informed and knowledgable. Ask YOUR doctor to refer you to another pediatrician. Doesn't even have to be a GI specialist at this...
  15. Cara in Boston
    I would develop a 504 plan even though you don't anticipate needing any accommodations. That way, if she gets glutened and misses several days of school, she will be able to make up the work. Also, my older son's school (middle school) has some pretty strict bathroom policies that would not work for my younger son (with Celiac). A 504 plan on file would...
  16. Cara in Boston
    Why wouldn't you get her tested?
  17. Cara in Boston
    In reading about the gluten free diet for me and my youngest son (both diagnosed with Celiac) there does seem to be a link to ADHD and Autism . . . but the best results come from implementing a gluten-free and Casein Free combination. I got the impression from several books that just gluten free alone is not what has been shown to produce positive behavior...
  18. Cara in Boston
    Buy a couple of GoPicnic meals (several varieties are gluten free) to have on hand. Keep one in her school locker, one in the car, etc. These are easy to grab if she is going to be out of the house for a day. I send them with my son if he is going over to someone's house . . . just in case. I buy them at Target when they are on sale. Open Original...
  19. Cara in Boston
    We had tacos for dinner every night for a week when my son and I were diagnosed. After a while, we figured out that most of what we normally ate was either naturally gluten-free or could easily be modified. At first I ran out and bought everything that had "gluten free" on the label. I put on 15 pounds in a month eating so much junk food. (And lots...
  20. Cara in Boston
    Yeah, I have a young-adult relative who clearly should be gluten free yet she claims she couldn't possibly "live" that way. When I looked back at how I "lived" before going gluten free (anxiety all the time, ) I only wish I had found out earlier (years earlier). My social life was seriously hindered by me wanting to stay close to home "just in case")
  21. Cara in Boston
    I was going to say the same thing. When my son was in the process of being tested, he had conflicting blood tests and we had a long wait for the endoscopy. HIs doctor planned on having him try the diet after the test even if it was negative. She considers a patient's reaction to the diet to be yet another test that can inform the doctor of what is going...
  22. Cara in Boston
    Looks like you have your answer. After more time gluten free, you may notice other (positive) changes that you didn't even know were symptoms. Better sleep, more energy, etc. My son's hair turned thick and curly after about 6 months. I'm in year three now and this year - NO MOSQUITO BITES. I had read that this might happen but after a couple...
  23. Cara in Boston
    Here's what is in our 504 plan for Joe. He is entering 4th grade. I just recently added the shelter in place part (after the ice storm in Atlanta stranded kids at school overnight . . . could happen here I guess). When he reaches middle school age, we will request he not share a locker (no chance of someone else's crumbs being around) but I can't think...
  24. Cara in Boston
    A positive biopsy will confirm the diagnosis of Celiac Disease. It will also give the doctors a "starting point" to monitor the damage and the healing once she starts the diet. Be aware that a negative biopsy does not mean she does not have celiac. It just means no damage was found. It could have been missed (human error) or perhaps there is not yet...
  25. Cara in Boston
    What does "growing right" mean? Obviously there is something wrong and he needs to see a GI specialist. My son was diagnosed at age 6 and was above-average for height and average weight. He was "growing right." Make sure you got the complete blood panel. My son was negative on three of the five tests . . . if they don't give them all, you could miss...
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