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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    The biopsy may not even be accurate. Four weeks on gluten may not be long enough.
  2. Cara in Boston
    I'm pretty sure I have it. Tested positive with blood test and it looks like my 5 year old has it too. My second blood test and biopsy came back negative - not sure if the 10 days gluten free caused this. I suppose I don't really NEED an "official" diagnosis but I want one so my (somewhat skeptical) family will take this seriously and get themselves tested...
  3. Cara in Boston
    I went gluten free for only 10 days (had to resume to do more testing) and I had the headache for DAYS. It was the same headache I had when I gave up caffeine - nothing would make it go away. Hang in there. Cara
  4. Cara in Boston
    We are in the middle of the process right now with my 5 year old. I am finding the process to be SLOW and frustrating, but I guess everyone just wants to make certain the diagnosis is correct if we are going to change a young child's diet for the rest of his/her life. We went to PCP in December, got first blood test results in January, (positive only...
  5. Cara in Boston
    Thanks for your help. I CAN'T WAIT to start him on a gluten free diet. We just really want to make sure we are done with the testing before we do. The new doctor mentioned he may still need an endoscopy and that could be delayed for up to a month! We'll see what she thinks after seeing these new numbers. Now that I have it in my head that he is sick...
  6. Cara in Boston
    We were very impressed with our new doctor. She seems to really know her stuff. She needs to review the results of the first doctor's blood test before moving forward. I just got a copy of the tests today and I continue to be confused. He is testing negative on all the IgA stuff but still got a positive on the DGP IgG. These are the numbers: DGP...
  7. Cara in Boston
    With the delay of 7 months, you can do both. Start the gluten-free diet now and give it a few months to see if it helps. At that point, you would still have time to do a gluten challenge (3 months) before the biopsy if you decide you want to continue with testing. By then, you may already have your answer. Make the appointment, you can always cancel...
  8. Cara in Boston
    Thanks for the input. One of the reasons we are happy we are able to take him to Children's Hospital is because I couldn't really get GI doctor #1 to answer any of my questions or take me seriously. I would imagine any parent of a 5 year old would have TONS of questions. I am hoping that with the switch, we get some more clear answers. They specialize...
  9. Cara in Boston
    Be strong! I know for me, if I went off the diet in front of family (they are skeptical to begin with) they would think that it is totally ok and they would't bother planning special meals that include gluten-free foods in the future. They would just assume it is a lifestyle choice, not a required change. You can do it. Cara
  10. Cara in Boston
    Can anyone make any sense of these numbers: 5 year old boy, not many symptoms. Had 2 weeks of stomachaches and marked behavior change back in November. Aches seem to be gone, mood swings and bad behavior still here. He really has no other symptoms other than very vague ones (dark circles under eyes, nosebleeds, excema on upper arms, etc.) Primary...
  11. Cara in Boston
    Thanks - I just thought of another (somewhat related) question. When I went (briefly) gluten free I felt horrible. My symptoms were worse and I had a headache. I'm guessing that was withdrawal. I only went 10 days then doctor wanted me to go back on gluten for testing. I never felt better, but a week later, had no symptoms at all. Then, they were...
  12. Cara in Boston
    We are STILL in the middle of testing. Both my son (5) and I had positive blood tests months ago. I am now on a three month gluten challenge and son has MD apt. tomorrow where we will hopefully get some more information. Whatever happens, when the testing is over, we will be trying out the gluten free diet. This board has been so helpful so far, I...
  13. Cara in Boston
    My chewing gum had gluten. I also found that some of the medications in our cabinet contain gluten - mostly the Children's liquid, flavored, stuff. I just check everything on line or call the manufacturer. If it is a processed food and does not say "gluten free" on it, I check it. Cara
  14. Cara in Boston
    We are in a similar situation. My 5 year old tested positive more than a month ago and it has been KILLING me to continue to feed him gluten while we wait for the next appointment (thankfully it is next week). I just wanted to suggest you get the other family members tested NOW so you can start the process with them as well. In our house, I tested positive...
  15. Cara in Boston
    I don't remember a single thing from my procedure. Barely remember my husband picking me up and taking me home. I was done at noon and don't really remember much until after about 3:00 PM (I think I'm very sensitive to the seditive). My doctor called with the results one week later. Glad my husband took the day off because I would not have remembered...
  16. Cara in Boston
    I am kind of new at this . . . we are still in the testing phase. Here's why we are going through with testing for my 5 year old son (even though we will go gluten free either way when we are done.) His blood test already shows he is reacting to gluten. 1. He is eating gluten now, has been his whole life, we are used to his (very few) symptoms. If...
  17. Cara in Boston
    I went from a positive blood test ("No doubt you have Celiac Disease") to a negative blood test and negative biopsy after going gluten free for 10 days. My doctor said he has never seen anyone heal that fast, but still thinks I may have it. I am back on gluten for three months to re-test and see what is up. I want to try to get an accurate diagnosis...
  18. Cara in Boston
    Yes, I plan to go gluten free after testing no matter what the results. I am pretty confident the tests will be positive again. I feel like the actual diagnosis is important - especially if it motivates my skeptical family (mother and sibs) to have themselves tested - they won't if it is just a "hunch". If I test negative again, I'll just do whatever...
  19. Cara in Boston
    I was only gluten-free for about 10 days (gluten-"light" about a month before that), not even long enough to see if I felt better. Actually felt a bit worse because of headaches, etc. Tested positive on blood test several weeks before, then negative on blood test and endoscopy (after 10 days gluten-free) Doctor wants me to come back in three months...
  20. Cara in Boston
    I'm no expert - haven't even been diagnosed yet (positive blood test, negative blood test, negative endoscopy, waiting for biopsy results) but if you are finished with the testing and just waiting for the results, why not try the gluten free diet to see if it helps? If your test is positive, you'll have to start it anyway, and if it is negative, you can...
  21. Cara in Boston
    Glad your daughter is feeling better. I don't know much about celiac disease because I am still in the middle of testing. I just wanted to share my story because I wish I HADN'T gone gluten-free so soon. I had the blood test done and was found to be POSITIVE. The doctor was certain, without a doubt, that I had it. She referred me to a specialist...
  22. Cara in Boston
    I've been very focused on Celiac Disease for the past couple of months because it looks like my son and I may both have it. He has only had blood tests, so we are not that far along with him. I had a (very) positive blood test, then a negative one (after 10 days gluten-free) and a negative biopsy (also after 10 days gluten-free). I am now supposed to eat...
  23. Cara in Boston
    Here's my (ongoing) story. Couple of months ago, my son (5) was having stomach aches and we had noticed a dramatic change in behavior. His doctor gave him a blood test for celiac and he tested positive on a couple of them, but not all. He also was tested for the gene and he has one. We are still waiting on the next steps for him. He is still eating gluten...
  24. Cara in Boston
    I am going through the testing process now for both myself and my 5 year old son. Since our primary care doctor is with Mass General, that is where we started. I was getting frustrated with both the long delays in between testing and my son's doctor simply not answering any of my questions. It takes forever just to get someone to call me back. Here's his...
  25. Cara in Boston
    I am fairly new to this but it is my understanding that ALL first degree relatives of someone diagnosed with celiac disease need to be screened for it (even with no symptoms at all). You need a new doctor. Ours was the opposite. My son tested positive with very few symptoms (a week of complaining of stomach aches and a noticible change in behavior) and...
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