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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    My son's numbers barely budged after 6 months (mine were within normal range within weeks) so we "stepped it up" . . . no more "processed in a facility that handles wheat", no eating out - unless the place was 100% gluten free, added a placemat to his school lunch routine, etc. etc. At his 1 year check-up (just last month) there was a significant drop...
  2. Cara in Boston
    From what I understand, they test the overall total IgA to determine if the other IgA tests will be useful. The test itself does not indicate celiac disease, it just points doctors in the direction of which tests are needed. If a person is IgA deficient (and it looks like your son is) then all celiac tests linked to IgA are useless. They need to switch...
  3. Cara in Boston
    I totally understand you wanting to make sure it is not something else. You can go Gluten Free and still look for other causes. Being gluten free will not affect the outcome of any other tests (other than celiac/gluten intolerance) so you can do both at the same time. Try the diet (strict) for three months. Keep a log of symptoms (including behavior...
  4. Cara in Boston
    The range is there for a reason. You child is out of range - therefor it is a positive test result. Who cares if the idiot doctor has seen worse cases? Does he want you to wait until your child gets worse? A child SHOULD have lower numbers because (hopefully) they haven't been walking around for 10 years damaging their systems while doctors try to figure...
  5. Cara in Boston
    If you have celiac disease, all first degree relatives (children, siblings, parents) should be tested (regardless of symptoms) and second degree (aunts, uncles, cousins, etc.) should be tested if they have symptoms. My son and I were diagnosed. My other son tested negative, but had some tooth enamel issues. Our doctor (celiac specialist) did an endoscopy...
  6. Cara in Boston
    My blood test went from very positive to normal after being gluten free for only 10 days. My son was still positive after 6 months gluten free. It took him a full year to finally be in normal range. It is different for everyone. My doctor told me that you need to be eating a regular diet for 4-6 months before being tested - 2 weeks is absolutely not...
  7. Cara in Boston
    Welcome to the board and to the gluten free life - Not everyone gets withdrawal symptoms (I did, my son did not) but they don't last long. For me, the first 4-5 days were the worst (worst symptom was a terrible headache that would not quit) then it gradually got better and better until I started to feel great (1-2 weeks?). After that, each week that...
  8. Cara in Boston
    My son (now 7) showed that his levels went down slightly after 6 months, but the doctor felt it should have been more significant. We stepped up our gluten-free efforts (no more "processed in a facility . . ." and no more eating out. His 1 year tests showed everything in normal range. I guess it just takes time. cara
  9. Cara in Boston
    Not sure if this has been said or not, but with your daughter's positive blood test, EVERYONE in the family should get their blood tested regardless of symptoms. Do this before you change anyone's diet. Then you can decide, based on test results and symptoms (or lack of) who needs further testing (endoscopy) and who doesn't. And keep in mind that negative...
  10. Cara in Boston
    My son (5 at the time) had ZERO symptoms and his drastic change in behavior was the thing that brought us to the pediatrician. (Strangely, I had all the classic symptoms but had never considered Celiac Disease.) He went from being a well behaved boy (no angel, but certainly within manageable limits) to someone we hardly recognized. Tantrums lasting hours...
  11. Cara in Boston
    I don't know if it ever gets down to zero . . . just within "normal" range. However, wheat free doesn't mean gluten free . . . he could still be getting gluten in things like Rice Krispies (barley malt) or other things? My son has been gluten-free for over a year and his numbers are right in the middle of "normal". Cara
  12. Cara in Boston
    You may need a new doctor. The fact that they told you they can't test for gluten intolerance and that it is rare is a big red flag. My son (diagnosed at age 5) never got the skin rash (dh) - he never really had any of the "classic" symptoms but now, a year later, if he accidently gets "glutened" he develops a red, raw ring around his mouth. Looks like...
  13. Cara in Boston
    Pregnancy can be a trigger for celiac disease. If you still have the rash, I believe they can do a biopsy on that for a diagnosis. But, with your positive blood tests, you already have your answer. The GI will probably want to do an endoscopy. Whatever the results of that, you should go gluten free after the test based on your blood tests alone. DO...
  14. Cara in Boston
    And, since everyone is different, 6 weeks may not be long enough to show up on tests. My doctor said 3-6 MONTHS. Cara
  15. Cara in Boston
    I think we need a new acronym for this board. So often I want to reply to posts with : YDIAI (Your doctor is an idiot) because I can hardly believe what I read. False positives on celiac blood tests are RARE. You are more likely to be overweight than underweight at the time of celiac diagnosis. Your endoscopy can be negative and you may still...
  16. Cara in Boston
    headaches and balance issues are also common symptoms of celiac and/or gluten intolerance. Looks like you have more than enough symptoms to justify getting the full panel of blood tests and possibly an endoscopy. Even if the tests are negative, the final test is giving the diet a try. Best of luck to you. Cara
  17. Cara in Boston
    Keep in mind too, if you are sensitive to gluten, your symptoms can change - and usually get more severe - after you have been gluten free. I had tons of symptoms that all went away when I went gluten free. Now if I accidently consume gluten, they all come back (worse then before) with the addition of severe joint pain - a symptom I never had before...
  18. Cara in Boston
    My son was put in early intervention at age 2 because of speech delays. He did fine. Started Kindergarten with no problem. He did have other "issues" that people noticed - and encouraged us to have him evaluated for autism. (Overly sensitive to smell, touch, etc., no eye contact, repeated himself often, hand flapping when agitated, extremely bright...
  19. Cara in Boston
    My son and I are both gluten free and since my husband comes from a large, Irish family, we usually have several events a month. Since my son is very, very sensitive, he can't eat anything made in a "regular" kitchen, even if they try to do it gluten free. I bought us each the "Zojirushi Classic Bento Vacuum Lunch Jar" (online at Amazon) and it is perfect...
  20. Cara in Boston
    Find out what blood tests were done. If your doctor is looking for celiac with a colonoscopy, he/she probably didn't do all the blood tests either. I'm going to bet you have not had sufficient testing done to rule out celiac disease (blood test and endoscopy). Her symptoms could all be caused by gluten intolerance. As soon as you are done testing...
  21. Cara in Boston
    Feeling worse at first is totally normal (and not very motivating). You are experiencing withdrawal. I had all my usual symptoms plus a giant headache that simply wouldn't go away no matter what. After about a week, the headache stopped and I gradually started feeling better. By two weeks I was amazed at my energy level, stopped taking my ppi (2x a...
  22. Cara in Boston
    I went gluten free a year ago and felt immediately better. Just recently I went grain free (gained some weight eating all those gluten-free processed products) and feel EVEN BETTER. I'm not super strict (like reading labels for hidden corn) but avoid most grains on a regular basis. The new weight is slowly coming off and I don't miss the starchy food at...
  23. Cara in Boston
    Yes, anxiety and panic attacks can be caused by gluten intolerance. You have celiac disease. It does not go away. It does not matter that no one else in the family has it (or knows that they have it) You do and you have to stop eating gluten immediately. No need for further blood tests. It probably just took a long time to cause enough damage after...
  24. Cara in Boston
    My 7 year old and I are gluten free. I was sad for him at first, and thought it would be hard, but he is handling it like a champ. It has been one year now and he has changed from my pickiest eater to the best eater in the house. It is not as hard as I expected to keep up with birthday parties and classroom celebrations. I try to prepare him for disappointments...
  25. Cara in Boston
    I know, I know . . . and he knows too. I think he is willing to give it a try, but he wants to finish any kind of testing first (and sort of thinks he is done testing for celiac disease) . . . He is worried he will put it all on gluten and it will be something else and he will never figure it out until it is too late (or something like that) He also thinks...
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