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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    My son had an abrupt behavior change . . . he was no angel to begin with, but suddenly he was having huge tantrums over nothing (the lego piece won't fit!) and meltdowns over the tiniest frustration (putting on shoes). He suddenly hated homework (previously rushed home to do it) and things like that. He complained for about 3 days of a stomach ache - at...
  2. Cara in Boston
    I'm pretty sure I read somewhere that your symptoms can seemingly disappear for months or years, but the damage is still being done (internally) and you are still at a higher risk of developing associated autoimmune disorders. I was reading specifically about teenagers/young adults. People diagnosed as kids, then they cheat (must be hard to be gluten-free...
  3. Cara in Boston
    Even if the results are within range, she didn't have all the tests so celiac disease cannot be ruled out. Had we not had the entire blood panel, it would have been missed in my son (5 at the time). All his IgA tests were perfectly normal. It was his IgG tests that were elevated. First doctor (Pediatric GI at very respected Boston hospital) said he DID...
  4. Cara in Boston
    Your symptoms certainly could be celiac. Also, it is sometimes hard to pinpoint trigger foods since the reaction can happen hours or days after you eat something. For me, the most significant clue was that I never had ANY problems until after my second child was born. After that it was one weird symptom after another (headaches, GI issues, joint pain...
  5. Cara in Boston
    My brother is in the process of undergoing various tests because of some weird symptoms. All his symptoms seems sort of vaguely autoimmune and since my son and I have celiac, I urged him to test for that first. His blood test came back negative, but they only did the total IgA and DGP IgA? Nothing with IgG . . . Anyway, his total IgA was high, which was...
  6. Cara in Boston
    Just wanted to repeat: KEEP EATING GLUTEN until your testing is done. Even a short time gluten free can change test results.
  7. Cara in Boston
    Just wanted to add that my son (7) was negative on all the IgA tests (but not total IgA - that was sufficient) but positive on the IgG tests. His biopsy was positive. I had positive blood tests and negative biopsy. My doctor diagnosed me with "gluten intolerance" instead of celiac because of the negative biopsy. My son's doctor (who seems more knowledgeable...
  8. Cara in Boston
    Also find out about how many patients with Celiac does he/she treat? How many did he/she diagnose? Our first (bad) doctor said he rarely finds kids who have celiac - this is at a major hospital in Boston. (really?) He said my son did not have it based on his conflicting blood tests (some were negative, some were positive), lack of symptoms (almost...
  9. Cara in Boston
    Hang in there. I felt better then ever within a few weeks. Months later, it was even better! Now (one year) I am almost back to how I was 10 years ago . . . But strangely, old habits are hard to break. I still worry about being out all day when I don't know where the bathrooms are! Even though this is no longer a problem, I spent so much time worrying...
  10. Cara in Boston
    Great that she is on the road to good health. Don't forget to get the whole family tested - even if no one else has symptoms. Cara
  11. Cara in Boston
    Not sure what other people do but our nutritionist told us to start with the least restrictions (No gluten ingredients) and see how that works. If we were still having problems, we would then move to the next level - no gluten ingredients and NOT processed on shared lines. After that, I'm not sure - maybe only whole foods and no processed foods at all?...
  12. Cara in Boston
    My doctor told me I needed to eat 2 slices of bread for 3-6 months - and this was after only 2 weeks of eating gluten free. I only made it 4 months and even then, my biopsy was negative. This was after having a high positive on the blood test. Since my son was diagnosed with celiac, I didn't see a reason to continue to eat more gluten just to try to get...
  13. Cara in Boston
    My son's doctor explained it to me like this: if you have a positive (blood test, biopsy, response to diet) you should be gluten free. All the tests have flaws. My son had negative IgA tests and a positive biopsy (and little or now symptoms) - he has celiac. I had positive blood and negative biopsy - my doctor diagnosed me with "gluten intolerance...
  14. Cara in Boston
    Make sure your B12 is gluten free - I made that mistake and seriously thought I had been misdiagnosed because all my symptoms came suddenly back. I have numbness in my hands and feet. I have been gluten-free for a year now and this is still an issue for me . . . much less frequently, but it still happens - unlike my other symptoms that are gone completely...
  15. Cara in Boston
    Look up the Paleo diet and give it a try. It is grain free and very low in carbs but high in fat. I have been sort of following it (but I include dairy and sometimes beans) for a few weeks now and I have found that switching from high carb/low fat diet to higher fat/low carb has solved the problem for me. I am no longer hungry between meals, I eat less...
  16. Cara in Boston
    Kitty - I could have written your post. My doctor kept sending me to specialists (neurologist, cardiologist, GI) , but since they were all different, no one looked at all the symptoms as a whole. It wasn't until my son was tested (his only symptom was behavior) that I even learned about celiac disease. When the whole family got tested after son was...
  17. Cara in Boston
    Yeah, what she said. You don't look for celiac with a colonoscopy, so the doctor must be looking for something else - which means going gluten free is PERFECTLY FINE at this point. The blood tests were positive, your child should be gluten free ASAP. Even if the biopsy is negative, she has tested positive for celiac. There are lots of reasons it does...
  18. Cara in Boston
    When I went gluten-free, the first 3-4 days were WORSE than usual . . . I felt terrible. All my regular symptoms, plus fatigue and a headache that would not stop. Found out later that it was probably due to gluten withdrawal. It did feel exactly like when I gave up caffeine. After about a week, I noticed I felt remarkably better . . . better than I had...
  19. Cara in Boston
    Just want to add - you really didn't get adequate testing to even say you tested negative. They only did one test. My son tested negative on the TTgIgA test too (and all IgA tests) but was found to have extensive intestinal damage. He is doing GREAT gluten free. The doctor that administered the test clearly does not understand Celiac Disease. Your...
  20. Cara in Boston
    Please have him continue to eat gluten until you see the GI - otherwise he will not be able to be tested for Celiac Disease. The symptoms you describe (even the weird hives) along with the family history, all point to celiac or gluten intolerance. The fact that he feels better gluten free makes it pretty clear. Also, an illness (stomach bug) or other...
  21. Cara in Boston
    Not sure why your doctor has asked you to go gluten free PRIOR to doing a biopsy as doing so will render the test results inaccurate. Your body could completely heal in one month and your endoscopy will appear negative but you may actually have celiac. You would then need to resume eating gluten (even if it makes you sick) for 3-6 months to even attempt...
  22. Cara in Boston
    I agree and would even go so far as finding a new doctor - one who has experience with celiac disease. Positive blood test, intestinal damage, . . . what is he waiting for? More damage? that just doesn't make sense. You caught it early. It does not go away, it only gets worse if you continue to eat gluten. Cara
  23. Cara in Boston
    I went through 5 years of seeing various doctors and none could figure out my strange symptoms. I had classic IBS symptoms, but also dizzy spells, numbness in my hands and feet, and heart palpitations (so I was seeing three different types of doctors and they were not communicating with each other.) When my son was diagnosed with Celiac and I started reading...
  24. Cara in Boston
    It sounds like he has all the symptoms of celiac disease and a family history of autoimmune conditions - I would actually be surprised if the tests came back negative. The lactose intolerance can be caused by celiac damage, so that could be a symptom too. I would finish the testing (blood tests and biopsy) then give the gluten-free diet a try for...
  25. Cara in Boston
    Keep eating gluten until after the biopsy! The process is frustrating enough . . . you don't want to alter the results by starting too soon. As soon as the biopsy is done, start the diet. Take the time in between to prepare your kitchen and shop for good, healthy food so you will be ready, but keep eating gluten until then. Even if the biopsy is negative...
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