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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    For many, Celiac Disease is triggered by some sort of stress on the body. It can be an illness, an emotional event, or even a pregnancy. I had ZERO symptoms before the birth of my second child. 5 years later, HE was diagnosed with celiac disease. I tested positive as well. All my symptoms went away when I started the diet. Try to get tested BEFORE...
  2. Cara in Boston
    You can be gluten intolerant and all the tests will be negative. The most important test is to try the diet yourself. Try to do it for 3 months and take it very, very seriously (no cheating). Sometimes it takes a while to notice that you are feeling better. I found that keeping a journal (just a calendar will do) and tracking your symptoms helps. Then...
  3. Cara in Boston
    Testing negative a year or two ago does not mean you don't have Celiac Disease now. It can be triggered at any time. Your symptoms sure sound like celiac or gluten intolerance.
  4. Cara in Boston
    My son's only symptom was a drastic and sudden behavior change. Otherwise he appeared perfectly healthy. Taller than average, fantastic eater, zero GI issues (ever, even as a baby). Mysterious things that improved (besides his behavior) after going gluten free: sleeps better, no dark circles under his eyes, more verbal and outgoing, more patience. His...
  5. Cara in Boston
    Good for you. Now that he is done with all the tests, you can go 100% gluten free with him while you wait for results. DON'T give up if the tests are negative. The "final" test is the diet. If he responds positively to it, you know what you need to do. Cara
  6. Cara in Boston
    This would annoy me. There are PLENTY of things this teacher could be doing for this unit that would not exclude your child. (The stickers are a great idea) If they are making the dough in the classroom, there will be flour residue on everything (including your child) for weeks. Rather than have you out shopping for alternatives, she should be looking...
  7. Cara in Boston
    The constipation alone is enough to request testing. Also, you don't have to have a diagnosis to figure out you are sensitive to gluten, just tell your doctor that you are and you are concerned that your child might be too. My son's ONLY symptom was behavior. He went from being a normal 5 year old (no angel) to suddenly having huge tantrums over nothing...
  8. Cara in Boston
    I've been trading candy for legos for years now and it works great. We keep enough to have 1 or 2 treats a day for about a week and that is it. They don't mind at all since they usually end up getting something they want even more (Legos.) Since one is now gluten free, we spend some time sorting and trading (and looking stuff up) so that all the treats...
  9. Cara in Boston
    Why didn't the GI run a full celiac panel again? Find out what blood tests you had originally - there is a very good chance you didn't get all the testing done and your original doctor is wrong. Also, you can have negative blood tests and still have celiac disease. An endoscopy may show damage. It may not. After you are done with testing try the...
  10. Cara in Boston
    Yes! Please get everyone in the family tested - especially before you make any diet changes. Also, a negative biopsy simply means DAMAGE WAS NOT FOUND, not necessarily that your child is negative for celiac. With her symptoms and positive blood test, it is likely that she has celiac. A diagnosis of gluten intolerance is ok because the treatment is the...
  11. Cara in Boston
    The whole purpose of having a blood test panel is becaue everyone's immune system is different. With several tests given, if even one is positive, you should consider that celiac is likely. What was your doctors explanation for the positive test? We had a similar situation. My son (5 at the time) got the blood panel. All the IgA tests were normal...
  12. Cara in Boston
    Good for you for noticing the possible signs and taking action. My younger son was diagnosed at age 5. He was already tall for his age, so we really didn't notice that over several months, he fell off his growth curve. He was tested for celiac based on a dramatic change in behavior. He really had no other symptoms (we were just lucky to get a really...
  13. Cara in Boston
    When I met with the nutritionist when we were first diagnosed, she said to start out with "common sense" (no gluten ingredients, new toaster, etc.) and see how it goes. If the symptoms and antibodies are still high, go to the "next level" (no eating out unless it is specifically gluten-free, no "processed in a factory with wheat", etc.) The final level...
  14. Cara in Boston
    I think the younger you are when you are developing your future eating habits, the better. My younger son (7) and I were both diagnosed at the same time. I had a MUCH harder time dealing with the "loss" then he did. I would stress (for him) about every play date and birthday party because I didn't want him to feel left out or different. After a short...
  15. Cara in Boston
    One of my boys and I have celiac. My other son (now 10) was tested at the time of our diagnosis (2 years ago) and was found to be negative. He had no symptoms, but his teeth seemed to be streaky and discolored. Our doctor at the celiac clinic at Children's Hospital decided to do an endoscopy even though his blood tests were all normal. It was negative...
  16. Cara in Boston
    Yeah, looks like he didn't get the full panel or the most current tests. Even if he had, and they were still negative, I would ask for an endoscopy. Another "test" of course, is the gluten free diet. If you go that route, be sure your doctor is open to giving him a diagnosis based on a positive response to the diet - not all will. I felt much better...
  17. Cara in Boston
    Do you know which blood tests were done? My son tested negative on most of the tests, and positive on only the IgG tests. His first doctor said he couldn't have it because the most common test (TTG IgA) was negative and he had no "classic" symptoms. By this time, I had tested positive too, so I knew to keep looking. We found a celiac specialist who did...
  18. Cara in Boston
    I was loopy for several hours after the procedure and in no way would have been able to go out to eat. My husband picked me up and dragged me to the car. I made him stop at McDonalds on the way home and scarfed down a Big Mac (which I never really ate before this, so it was weird.) Then I went home and slept/watched TV on and off for a few hours before...
  19. Cara in Boston
    When we traveled, I brought most of the food for me and my youngest son. Husband took older son out to dinner and we ate in our hotel room. I packed lots of easy, "snacky" meals (crackers and hummus, crackers and tuna, crackers and peanut butter) plus lots of fruit, etc. When we had a fridge, I also bought a bag of salad and veggies to add to it. The...
  20. Cara in Boston
    We love Ancient Grains Quinoa Pasta. The entire family eats it (even though only two of us NEED to) and no one complains. I found the rice pasta to be mushy. The quinoa pasta is even good the next day. Cara
  21. Cara in Boston
    Make sure you got the gluten free rice krispies. Kelloggs makes two kinds. The regular ones have malt and are NOT gluten free. At first we started out buying all the gluten-free processed food (in a panic!) but now - almost two years later - we mostly buy naturally gluten free foods. It is less expensive and better for you. It seems overwhelming now...
  22. Cara in Boston
    After my son had a positive biopsy, I got tested too. My blood test was positive and my biopsy negative. The doctor couldn't "officially" diagnose me with celiac disease since the biopsy was negative but diagnosed me with "gluten intolerance" instead. Whatever. I most certainly have celiac disease. All my classic symptoms went away when I started eating...
  23. Cara in Boston
    I had a positive blood test and negative biopsy. My doctor "officially" diagnosed me with "gluten intolerance". Whatever. My son was diagnosed by biopsy. I asked his doctor what she thought about my confusing results and she just laughed. "Of course you have it. You have symptoms, you tested positive, you feel better gluten free, celiac is in your family...
  24. Cara in Boston
    It sounds overwhelming at first, but after a while, you get used to it. I have yet to find a favorite food that I can't recreate in a gluten free form. Yes, it takes more time and planning, but your continued good health is worth it. IBS would be unacceptable to me too . . . keep looking for the cause, not just a label for your symptoms. All first...
  25. Cara in Boston
    I was diagnosed with GERD and put on PPI "for life" . . . two years later, after my son was diagnosed with Celiac, I tested positive for celiac disease too. One week gluten free and I was off all medication. Read up on the meds - they were never intended to be used long term, especially in children (although doctors routinely prescribe them for months...
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