Jump to content

Cara in Boston

Advanced Members
 View Profile  See their activity

  • Posts

    679

  • Joined

  • Last visited

  • Days Won

    1

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

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
    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. Cara in Boston
    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. Cara in Boston
    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. Cara in Boston
    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. Cara in Boston
    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...
  16. Cara in Boston
    Since it sounds like testing (for celiac) is complete, you can go ahead and start him on the diet. If the test results come back inconclusive (biopsy can only confirm celiac, not rule it out) you can continue the diet for 3 months to see if it helps. Not sure what his symptoms were, but if you see improvement on the diet, you will have another clue as to...
  17. Cara in Boston
    I do think it would be great to have an actual, concrete diagnosis. However, there is a chance you could go through all the pain and suffering and the biopsy could STILL be negative and that will not rule out celiac. It just means the damage was not found, NOT that she doesn't have it. The doctor could miss it, the gluten challenge might not have been...
  18. Cara in Boston
    Thanks for the suggestions so far. We will be staying close to the museums and stuff - taking the train, so we won't have a car to travel too far.
  19. Cara in Boston
    Bringing the kids for a visit on spring break in April. Last time we were there, no one was diagnosed. This time 2 of the 4 of us are gluten free. We plan on getting a hotel with a kitchenette so we can cook breakfast and pack a lunch, but we'd like to eat out a couple of times too. However, the thought of being sick while traveling, or having symptoms...
  20. Cara in Boston
    I think what you are doing is great, however, you will not get the full experience because you will have no reaction when the waiter, menu, kitchen staff, manager, etc. is wrong. Our extended family is constantly rolling their eyes when we decline dinner invitations because they just don't get it. If the place has a gluten free menu, why don't we just enjoy...
  21. Cara in Boston
    Our frustrations are pretty simple. We have 4 in the family, 2 diagnosed with celiac disease (10 year old and me, the mom). We live in Boston where we seem to have some choices for eating out. However, for the kid, he can go to several places and get a cheeseburger (99, 5 Napkin Burger, etc.) but none of them can cook french fries safely. Who wants...
  22. Cara in Boston
    It is not uncommon for people's symptoms to change over time and for them to be more intense after being gluten free. The longer you are gluten free, the more sensitive you become and the more intense your symptoms become. My son had ZERO symptoms (except for a behavior change) when he was diagnosed three years ago. Now he gets stomach pain and vomits...
  23. Cara in Boston
    She has symptoms, so she should be checked. First degree relatives of people diagnosed with Celiac Disease should be tested every three years - regardless of symptoms - and sooner if symptoms present. My "regular" kid gets tested every couple of years, but every I admit, I tend to think "CELIAC!" every time he has a bad day . . . he is getting tired...
  24. Cara in Boston
    My son was only positive on some of the blood tests, perfectly normal on the others, so if you were not given the complete panel of tests, it could be missed. Also, some people (esp. kids) never have a positive blood test. It is possible to have negative tests and still have celiac. Another thing to consider is non celiac gluten sensitivity. Same symptoms...
  25. Cara in Boston
    Wheat flour can stay airborne for hours and eventually settles on everything. My son is so sensitive to cross-contamination, I don't bake with wheat flour in our home at all and we rarely eat out, even if a "gluten free" menu is available. If there is flour in the kitchen, the risk is too high. I would not have my child be in the classroom where cooking...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.