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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    We have been going through the testing process since December when he tested positive on some, but not all, of the blood tests. He has very few (almost none) symptoms. The original complaint of stomach pain has been gone for several months and the horrible behavior that started at about the same time seems to finally be gone. In just the past week we have...
  2. Cara in Boston
    I am terrible at planning ahead so at the beginning of the week I make little bags of snacks (ziploc sandwich sized bags) and keep them ready to grab as I walk out the door. I use the snack size bags to keep things separate. So far, the best combination (keeps me full) is: pretzels (Snyders makes gluten-free ones that are good and not expensive) nuts...
  3. Cara in Boston
    Behavior (defient tantrums, meltdowns over the slightest frustration, etc.) is what brought us to the pediatrician in the first place. After he tested positive, I learned he had more symptoms (frequent bloody noses, random joint pain, etc.) that I never really thought were a big deal. My son is 6. Cara
  4. Cara in Boston
    I think it has to do with all the products that are jumping on the bandwagon and putting gluten-free on their packages to entice people into thinking they are somehow healthier when they are not. (Fruity Pebbles?) Many people are just ignorant and think that "gluten FREE" somehow means better for you or less calories, etc. People who do not need to eat...
  5. Cara in Boston
    I read the "5 years" thing too. I actually think you will end up having a LOWER risk because (and this is only after being gluten-free for 10 days, no expert here) you diet is likely to be MUCH healthier than the average person. Avoiding gluten helped me avoid a lot of crappy, processed food that I shouldn't be eating anyway. My gluten-free diet had...
  6. Cara in Boston
    I'm pretty new at this and there are many on this list who are far more knowledgable. I'm sure you will get lots of good advice. Your symptoms sound very much like you could be gluten intolerant and/or have celiac disease. You may find that after going on a strict gluten-free diet you feel much, much better. But once you go on the diet, most of the...
  7. Cara in Boston
    What about the test from Enterolab? Again I don't know much about them, but I think they are done on a stool sample - not invasive.
  8. Cara in Boston
    I didn't realize you were pregnant. If I were in your situation (pregnant and wondering if I was gluten sensitive) I would definitely start the diet right away. You can always do a gluten challenge if you find that you want to try testing at a later date, but after going gluten free you may already have your answer. Do what you need to do to be healthy...
  9. Cara in Boston
    I guess it doesn't really matter what the test says in May, I'll go gluten free anyway because I believe it will help. I've only had symptoms for about 5 years and they are pretty mild (compared to what I read here) so another few months should be do-able. If I had a firm diagnosis, my mother and siblings would be more likely to take it seriously and...
  10. Cara in Boston
    I don't think I'll be much help because we are still waiting final tests. But I can confirm that the results can be all over the place. My son tested positive on the IgG and the TTG IgG but negative on all the IgA tests (even though he makes enough, it was still negative.) On his second round of tests he was positive for the DGP IgG, but negative for...
  11. Cara in Boston
    Our doctor (a celiac specialist) thinks my son (6) has celiac based on his blood tests - he only tested positive on the IgG tests and completely within range on all the IgA tests. He goes in for an endoscopy next week but we already know he is at the very least, gluten intolerant. Not sure why they didn't do the IgG tests. Did they do a total IgA test...
  12. Cara in Boston
    My son (just turned 6) has tested positive twice on the blood test but only for the IgG. He also has one of the genetic markers for Celiac. His doctor has confirmed that based on his blood tests hs is (at least) gluten intolerant and is continuing to check him for Celiac (endoscopy next week) If his endoscopy is negative it could be because he doesn...
  13. Cara in Boston
    I don't understand why he won't do the blood tests? Aren't you supposed to do the less invasive stuff FIRST, and the endoscopy as the final test? You MD sounds like a jerk (and maybe not well informed.) Maybe I misunderstood what you wrote - it just doesn't make any sense. Cara
  14. Cara in Boston
    Don't forget to sort out your medicine cabinet too. Don't wait until you need something and find that it has gluten in it. Cara
  15. Cara in Boston
    I really want a clear diagnosis because that, and only that, will convince my family to get tested as well. Also, I feel like it would be important (more credible?) to have it included in my medical record so if I develop symptoms of some other, related condition, any doctor would know my complete and accurate history. That being said, I am almost at...
  16. Cara in Boston
    I had a very positive blood test. Went gluten-free to see if it worked (I know, everything I read said not to, but I couldn't resist). When I went to see the GI I had only been 10 days gluten-free. He ordered an endoscopy and took more blood - said 10 days would not make a difference. Went home and ate wheat for 2 days. Blood test and endoscopy were...
  17. Cara in Boston
    This has been helpful to read. I wish they had a sedative for the moms . . . We go in two weeks. My son (just turned 6) is sort of excited to go because he saw Children's Hospital on "Fetch with Ruff Ruffman" (PBS Kid's show) and wants to be in a hospital room where he can dial, "F.O.O.D." on the phone and get jello. We also read "Eating Gluten Free...
  18. Cara in Boston
    My son's third grade class just took the MCAS tests and they were handed granola bars (not gluten-free but nut-free) and bananas during the test to keep up their "energy". (how long is this test?) Luckily, he is not the kid with the problem, it is his younger brother. Occasionaly he will come home with his lunch box full because the teacher ordered pizzas...
  19. Cara in Boston
    Really? No one? Has anyone had their doctor tell them a shorter time for the gluten challenge? Different books I have read say "several weeks", "a couple of months" and "three month minimum." I can't imagine my little 10 day trial of being gluten free would take so long to reverse. Really, I'm just being hopeful that things will happen much quicker...
  20. Cara in Boston
    I would caution you against going gluten free before the tests are done. I have all the symptoms (well, not all, but plenty). I tested positive on my original blood test. In the time I was waiting to meet with the GI doctor, I tried going gluten-free to see if my symptoms resolved (really, who can resist?) When I saw the GI doctor, he did another blood...
  21. Cara in Boston
    Denise - Hang in there. Our original blood test was waaaaaayy back in November. Every new step seems to have about a month of waiting in between. Right now we are just waiting (estimated 2 weeks) for the "scheduler" to call us to schedule the endoscopy. Once we get the call, the wait is expected to be another month. I feel like such a bad mom...
  22. Cara in Boston
    I just wanted to add, our doctor reviewed all of my son's test results (positive on only the IgG tests) and is still concerned. His symptoms have basically resolved (except for behavior) so I don't know what to think. The next step is an endoscopy. The MD said that since he has enough IgA (you daughter didn't seem to have a total IgA test done?) she...
  23. Cara in Boston
    I can't believe it is mid-March and I am still posting on the Pre-Diagnosis list. I was certain (and told by MD) that I have it . . . Anyway, here's my question for today: I tested very positive on the initial blood test (for IgA and TTG IgA). By the time I got in to see the GI (at an actual Celiac Center) I had already been somewhat "gluten light...
  24. Cara in Boston
    I had really bad headaches (well, actually it was just one headache that lasted days) too. They were gone by day 10. They were exactly like the headaches I got when I kicked my diet coke habit a few years ago. I found that chocolate (lots) helped in the first two weeks of being gluten free (and strangly, I still lost about 5 pounds) Good luck. It...
  25. Cara in Boston
    It is my understanding that all first degree relatives should be screened no matter what. Screening should continue every two or three years as it can crop up at any time. Second degree relatives (aunts, uncles, cousins, etc.) should be told so they can get screened if they have any symptoms or unresolved medical issues. I tested positive after my son...
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