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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    A positive is a positive. My son was only positive on the IgG tests and negative on all IgA tests (even though he was not deficient). I was the opposite. He has extensive intestinal damage. I had no damage at all. He had zero GI symptoms, I had mostly GI symptoms. We both have Celiac and our symptoms went away when we went gluten free. It is...
  2. Cara in Boston
    You could also have NCGI (non Celiac gluten intolerance). Same symptoms, negative blood tests. Why not try eating gluten free and see if you improve. Give it time (6-8 weeks) and don't cheat. If you improve, you'll have your answer. Given the negative blood tests, it is not likely they will test you further, so changing your diet is fine.
  3. Cara in Boston
    I was not diagnosed (nor did I have any symptoms) until my second pregnancy. At about 4 months, I developed GI symptoms, insomnia, etc. I just attributed it to being pregnant. The symptoms continued and new ones developed. Over 5 years, I saw doctors for various problems (neurologist for dizzy spells and numbness; cardiologist for heart palpitations,...
  4. Cara in Boston
    Did the doctor diagnose you with anything? It sounds like diverticulitis. Usually treated with 10 days of antibiotics. Infection can improve, but if it isn't 100% cleared, it can flare up again. I just had a flare up that didn't improve after 10 days on meds. Ended up in the hospital for 5 days of IV antibiotics. This condition is not related to Celiac...
  5. Cara in Boston
    We've tried them several times and each time, we get sick. It's a shame because we really liked having this easy option. Didn't Canada just rule that Cheerios CAN NO LONGER be labeled gluten-free there? We also stay away from other products that rely on some "system" to remove gluten (like some gluten-free beers). Just stick with things that have...
  6. Cara in Boston
    We love Vernors and bring it home when we visit Michigan. I hoard it in the basement for any stomach issues that pop up. My son and I (both Celiac) have never had a problem with it. Instead of gatoraide, consider coconut water to replenish fluids and electrolytes. Does a better job and no chemicals or dyes. Not coconut milk . Coconut water. They sell...
  7. Cara in Boston
    I just had one done last week. I called the CT place in advance and the first person I spoke to didn't know the answer. She told me not to worry though, because I could have juice instead if needed. (This made no sense to me, but whatever). On the morning of my appointment, I called first and again, someone told me she didn't know the ingredients, but...
  8. Cara in Boston
    The biopsy can only confirm Celiac, it can't rule it out. A negative biopsy does not mean she does not have Celiac . . . it only means damage was not found. Maybe there is no measurable damage (yet). Maybe it was missed. It does not mean no Celiac. Your daughter has a positive blood test and Celiac symptoms. The next "test" is to see if her symptoms...
  9. Cara in Boston
    We just went to Legal for lunch today (near Aquarium) and I had a great conversation with the staff. I learned that ALL their fried foods are gluten-free because the recipe (chickpea flour) was so good, they were able to replace it for all the battered food so that they could eliminate the wait for the dedicated gluten-free fryer. They have so many requests...
  10. Cara in Boston
    We live in Boston. There are no 100% gluten free places, but there are a couple of places we feel very safe - my son is very sensitive and needs precautions taken to prevent cross contamination. When at MGH, we usually walk up the street to Whole Foods for a treat. Lunch or dinner at Legal Seafood (you can even get gluten-free fried calimari!). For a...
  11. Cara in Boston
    A drastic change in behavior is what led us to the doctor in the first place. My then 5 year old suddenly went from being a "typical" boy (no angel) to having terrible melt downs over seemingly insignificant things (wrong toy in happy meal, legos didn't fit together, socks were too hard to put on . . .) He was angry all the time and his tantrums included...
  12. Cara in Boston
    At my son's last birthday, we just skipped the cake in favor of an ice cream sundae bar . . . my son thought it was great. Several ice cream flavors, several sauce choices, several sprinkles/toppings. Everyone loved it and we didn't miss the cake at all. If he must have cake, we usually use a mix (Betty Crocker Gluten Free) and then add to it. There...
  13. Cara in Boston
    I know, I know . . . and he knows too. I think he is willing to give it a try, but he wants to finish any kind of testing first (and sort of thinks he is done testing for celiac disease) . . . He is worried he will put it all on gluten and it will be something else and he will never figure it out until it is too late (or something like that) He also thinks...
  14. Cara in Boston
    Thanks so much for all the info. My brother actually came across this post while poking around on the web looking for information. He thought it was funny when he realized it was about him. He is in Boise and I am in Boston. Just an update . . . Neurologist looked over MRI images and said they look fine - no need to test spinal fluid as he saw...
  15. Cara in Boston
    Neither of you got the full panel so neither of you can rule out celiac. Also, even a week of being gluten free can make the blood tests less reliable. Cara
  16. Cara in Boston
    My brother is in the process of undergoing various tests because of some weird symptoms. All his symptoms seems sort of vaguely autoimmune and since my son and I have celiac, I urged him to test for that first. His blood test came back negative, but they only did the total IgA and DGP IgA? Nothing with IgG . . . Anyway, his total IgA was high, which was...
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