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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    Yes, our school switched to the hand sanitizer INSTEAD of regular washing so I had to make sure the I had actual hand washing (with soap and running water) in his health plan. Felt silly spelling it out, but it needed to be clear. Also - check to see if you can leave gluten-free cupcakes (Whole Foods sells frozen ones that are pretty and delicious) in...
  2. Cara in Boston
    Also find out if they make their own playdough and/or bake often in the kitchen space. Flour can remain airborne for hours and eventually settle on every surface posing a risk for cross-contamination. Keep reminding your child to keep her hands away from her mouth and always wash with soap and running water before eating. (Some schools have kids just...
  3. Cara in Boston
    My blood test went from positive to negative after 12 days of being gluten free. My son's blood was still testing positive after 6 months gluten free. It is different for everyone. Did you feel better when you were gluten free? Cara
  4. Cara in Boston
    I think it was irresponsible of your doctor to suggest the diet before at least trying the tests. If he has been sick for this long, there is probably some damage that would show up in a biopsy. I am wondering if YOU were properly tested. IBS is a frequent, incorrect diagnosis for people with celiac disease. It is genetic. Many doctors differ on...
  5. Cara in Boston
    I bet you will see a HUGE improvement in behavior once you are able to get her gluten free. I was amazed. It makes it so much easier to be very, very strict with the diet when you see how much even a little gluten effects so many different things. Good luck - Cara
  6. Cara in Boston
    You have celiac disease in the family and your daughter has very clear symptoms. You are so lucky to have a doctor that sounds like he actually knows a little something about it (blood tests can be falsely negative, continue eating gluten until testing is done, etc.) My son had ZERO symptoms until we noticed a sudden change in behavior. He was taller...
  7. Cara in Boston
    More celiacs are overweight at the time of diagnosis. Being underweight due to malabsorption IS a symptom of celiac, but not the most common. If you don't need a formal diagnosis (for school, insurance, etc.) don't bother making yourself sick in order to be tested. Don't bother spending additional money to find out an answer you already know. However...
  8. Cara in Boston
    We were recently at a wedding as a family and I brought dinner for both me and my younger son. I was worried about the awkward moment when the food was served, but it was no big deal. No one hardly noticed. I did make our meals match as much as possible. I let the bride know in advance - saved them $300 by not having two additional plates served that...
  9. Cara in Boston
    Your list sounds like classic Celiac Disease. Bring your list with you to the doctor. It may also be helpful to find out more about your family history. While we had no (diagnosed) celiac in our family, I came across lots of aunts and uncles with other autoimmune disorders as well as GI "issues". Bring a list of any family members suffering from related...
  10. Cara in Boston
    Your biopsy sounds like a description of celiac disease. Were your blood tests taken after you went gluten free? Even a few days can alter the results. My son had negative blood test on the most common tests (TTG Ig A and DGP IgA) but he had a positive endoscopy and clearly has celiac disease. Sometimes the blood tests can be negative and you can...
  11. Cara in Boston
    My son was diagnosed at age 5 and had zero symptoms. At a doctor's visit I mentioned that we were suddenly struggling with terrible behavior - like nothing we had ever seen - and she tested him for celiac. Off gluten he is is our funny, sweet, boy. When accidently glutened, he is horrible. Tantrums at the slightest frustration, screams and yells at...
  12. Cara in Boston
    I have read (and been told by my son's doctor) that the symptoms can come and go - especially in children. She said sometimes they can seemingly disappear for months at a time - especially in teenagers. People often think they have "outgrown" their sensitivity. The symptoms may be gone, but the damage is continuing. For us, we see symptoms days later...
  13. Cara in Boston
    It sounds like you may have had a blood screening for Celiac Disease and you tested positive. celiac disease is much more serious than a "gluten sensitivity" in that cheating on the diet is NOT an option. (If you were just intolerant, you could cheat and just suffer the uncomfortable consequences) With celiac disease, you have an autoimmune condition...
  14. Cara in Boston
    Thanks for sharing and welcome to the group. You are so lucky you live near a celiac center. My brother in Boise has been told numerous times he doesn't have an issue with gluten since he doesn't have a positive TTG test and no GI symptoms. They'd rather spend thousands of dollars doing MRIs on his brain to find out why he has dizzy spells and numbness...
  15. Cara in Boston
    You have celiac disease. You are so lucky you have a doctor who understands that the disease can be present - causing damage - without any symptoms at all. Finding out before you have symptoms or before you develop an associated AI condition will surely save you years and years of discomfort and possibly irreversible damage. I imagine it will be...
  16. Cara in Boston
    You certainly sound like a candidate for celiac. Do not try the gluten free diet until AFTER you have been tested by your doctor. Once you eliminate gluten from your diet, all tests will come back negative. Depending on your situation, you may not need a doctor's diagnosis. I needed one for my son since he was only 5 at the time . . . he has years and...
  17. Cara in Boston
    Being gluten free will not cause you to be allergic - you either are or you aren't. However, once you are gluten free, you may become more sensitive to even smaller and smaller amounts. Your symptoms may change (develop new ones) and may become more severe. The longer you are gluten free, the more sensitive you may become. We also find Pamela's Pancake...
  18. Cara in Boston
    I hear you. I think people are just trying to be helpful. Really, before we were diagnosed, I'm sure I couldn't imagine never eating wheat again. What annoys me most is, "Oh, Applebees (or Dominos, or Olive Garden, etc. etc.) has a gluten free menu! You'll be fine! They don't understand that due to cross contamination most of those places with gluten...
  19. Cara in Boston
    After a year of being gluten free, my family has started eating much more paleo and everyone is benefitting (even the non-celiacs). I could never have done it before - I would have missed my pizza, bagels, and flour tortillas - but since we had already given up those things, the transition has not been hard. Yes, there are gluten-free alternatives to...
  20. Cara in Boston
    My husband keeps nagging me to go out to eat. We tried it a few times in the beginning but didn't have good luck. I just accept the fact that no matter how careful I am about what I eat, I can't expect the random cook, server, table cleaner, etc. in a restaurant to have the same standards. Even if they have a gluten-free menu, it does not mean everyone...
  21. Cara in Boston
    Before going gluten free I would buy a bottle of Advil about once a month. I went gluten free in March 2011 and have not needed to buy any since then - still have half a bottle left. I get occasional headaches (usually sinus related) now and then, but nowhere near what was "normal" for me in the past. I was also diagnosed with GERD - supposedly from...
  22. Cara in Boston
    An allergy test will not tell you if you have celiac disease or a gluten intolerance. You may want to ask for a Celiac panel at the same time as your allergy tests. Cara
  23. Cara in Boston
    I doubt 4 weeks would be long enough - although it is different for everyone. My doctor told me 4-6 MONTHS (I did not last that long.) The only thing you would need to be eating gluten for is to be tested for Celiac. You already KNOW you have an issue with gluten so I'm not sure why, after 6 years, you need to be tested for it. If there is a concern...
  24. Cara in Boston
    I had zero symptoms until I was pregnant with my second child. Suddenly I had "bathroom issues" (as my husband call them), gassy, headaches, etc. I thought it was just a pregnancy thing and that it would all go away once I had the baby. All during his preschool years I was at the doctor with some odd complaint - usually convinced I was dying of something...
  25. 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...
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