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Cara in Boston

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Cara in Boston last won the day on May 6 2012

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  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Looking for recommendations for places to eat with 2 in our group diagnosed with Celiac. My son is very sensitive, so we are looking for places that not only have gluten free menus, but are also trained to avoid cross contamination and other problems. There seems to be lots of places that say they can accommodate the gluten free diet, but we've had problems...
  12. Things like this happen more often than you would think. I have this included in my son's 504 plan at school: "Staff will be aware of food “bullying” and notify administration and parents if it occurs or is reported. Reported incidents will be handled in accordance with the BPS Anti-bullying policies." I would have zero patience for any kind of ...
  13. A negative biopsy does not mean you DON'T have Celiac. It only means damage was not found. This could happen for several reasons, the most common is they just happened to biopsy a spot that did not have damage. It is often missed. You also might not have enough damage to show up yet. Some doctors wait until you do to give a diagnosis. This is crazy...
  14. Please have her tested for Celiac now that she is currently back on Gluten. At age 5 my son's behavior went from "normal" (he was a handful, no doubt, but nothing unusual) to super-sensitive-tantrums-at-any-time . . . he was irrational, no amount of redirection or even threats of punishment seemed to matter. The tantrums were over things like not being...
  15. Read up on the Paleo diet. I lost weight while consuming slightly more calories. Once I eliminated grains and added more fat, that seemed to do the trick. Plus, I found that I felt GREAT. Not starving all the time. I made sure I had protein and fat at every meal (avocado, nuts, olive oil, etc.) and everything improved (medical numbers, skin, hair, energy...
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