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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    Positive blood work and a positive reaction to the gluten free diet should be enough to diagnose your daughter. A negative biopsy ONLY means that damage was not found. It does NOT mean you do not have celiac. Damage might not be found for lots of reasons: did not biopsy damaged spot, not enough damage to measure (yet), test results misinterpreted,...
  2. Cara in Boston
    If your child is mostly gluten free before testing - you are very likely to get negative tests on everything - even if there is a problem with gluten. Eating gluten a few days before the test is not likely to be enough. Doctors differ in what they think is "enough" but most agree you need to be eating gluten regularly for 3-6 months before attempting to...
  3. Cara in Boston
    My son will have physical symptoms for a couple of day, but unfortunately, the behavior can last a month. Tantrums at the drop of a hat (socks don't fit right, legos won't stay together, backpack zipper not fast enough, etc. etc.) It doesn't happen often (2X in 2 years) but it is horrible. I talked to his doctor about what to do when he is older....
  4. Cara in Boston
    It is pretty clear from your blood test that you have celiac disease. Your doctor could just diagnose you based on that alone - or that and your (hopefully) positive response to the diet. If not, is there a reason you need an "official" diagnosis? I wanted to be very, very certain when my son was being diagnosed because he was only 5 at the time...
  5. Cara in Boston
    The blood tests can confirm a diagnosis, but they really don't rule it out. Many are sensitive to gluten and it simply doesn't show on a blood test. My doctor said to consider the gluten free diet as the "final" test. If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better. It certainly...
  6. Cara in Boston
    Joint pain was never one of my symptoms before being diagnosed. But now (2 years later) if I accidentally get glutened (cross contamination? I never intentionally eat it) it is the first symptom to show up. All my joints ache for a couple of days. Has happened twice, both after eating out of the house (wedding and vacation) but sticking to gluten free...
  7. Cara in Boston
    I would find a "celiac savvy" pediatric GI first (try contacting the Celiac support group in your area first) . Testing kids is complicated and often done wrong. A first degree relative with celiac and elevated gliadin is a pretty good indicator that something is up. After my son tested positive, we took him to a GI who said he couldn't possibly have...
  8. Cara in Boston
    I sent in a letter letting other parents know that the best way to include Joe is to just send me an email and let me know what they are planning on bringing in so I can prepare a safe alternative for him. I let them know that simply avoiding gluten ingredients in a recipe is not enough and that his food must be prepared in a gluten free kitchen. There...
  9. Cara in Boston
    We use those mats too. My super-sensitive guy has not had a problem in two years at school. I wipe them down each night with kitchen cleaner (plastic side) and toss them in the wash every now and again if the fabric side gets soiled. The "allergy kids" at my son's school can also get a tray that has been washed in the industrial dishwasher to use so...
  10. Cara in Boston
    Many people infected with Lyme go months (or even years) without being diagnosed. They don't remember a tick bite, they didn't get (or didn't notice) the rash associated with it. Frequently they are misdiagnosed with other "syndromes" (chronic fatigue, fibromyalgia, etc.) and given meds to relieve the symptoms, but the illness is still there. I found the...
  11. Cara in Boston
    Have you been tested for Lyme Disease? My celiac son had a similar situation and I assumed that he was getting gluten from somewhere. After MONTHS of searching my kitchen, his blood tested fine so we knew we had to look somewhere else to find the cause of the problem. Turns out he had Lyme Disease from a tick bite that was almost a year old (at the time...
  12. Cara in Boston
    The genetic test may help or it could add to the confusion. My son (diagnosed with positive blood test and positive biopsy) had the genetic test done by his first GI . . . it showed he wasn't likely to have it and this made the doctor convinced he didn't have it (no GI symptoms either) so in our case, it made matters worse. The other blood tests could...
  13. Cara in Boston
    My son's only symptom was a drastic behavior change - he went from "average" 5 year old boy to absolutely horrible - tantrums over everything, sobbing for hours, just generally difficult to be around. We were at our wits end. He had a positive blood test (some but not all) and a NEGATIVE genetic test. This just added to the confusion. The GI doctor said...
  14. Cara in Boston
    Think of it this way, celiac damage was "not found" . . . it does not mean you don't have celiac. The damage could have been missed. Perhaps you are in the early stages and the damage is not yet measurable. There are lots of reasons for a "negative" biopsy. Unfortunately, some doctors won't give you a diagnosis without a positive biopsy. I had all...
  15. Cara in Boston
    You need to find out the ranges the lab uses to determine if your numbers are out of range (positive.) Also, a week of eating gluten is probably not enough, but it is different for everyone. My doctor told me to eat gluten for 6 months before being tested again. I gave up after 3 and my test was still negative. Since my original test was positive and...
  16. Cara in Boston
    My son was diagnosed at age 5. He complained for about a week of a stomach ache and it was gone before we even got in to see the doctor. He never had any GI issues at all. What we did notice (about a month before the complaining started) was a drastic change in behavior. Tantrums over nothing, just totally out of control. When I mentioned this to the...
  17. Cara in Boston
    It definitely sounds like celiac. The symptoms and the IgG test. But, I would really hesitate to change her diet until you see the specialist. Once you make the change, there is no way to do any more tests without going BACK to eating gluten and sometimes it is much harder after being gluten free. The symptoms can be worse. It took us almost 4 months...
  18. Cara in Boston
    The Udi's ones are good - not perfect, but better than anything else I have tried. If you are having trouble with them not being pliable, just warm them in the microwave between two slightly damp paper towels and they work MUCH better. This might work with other brands too. Cara
  19. Cara in Boston
    I have never heard of a test being falsely positive. The fact that she was still positive after being gluten free for a while is even more proof that she is reacting to gluten. Some doctors will diagnose based on reaction to the diet. Maybe you can get a doctor's note for school based on that alone. I agree that they need to find the test results...
  20. Cara in Boston
    After I tested positive (blood test) my doctor did an endoscopy and it was negative. I had already been gluten free for two weeks. Not sure if that skewed the results or if I just didn't have enough damage to measure at that point. I did, however, feel 100% better gluten free. He instructed me to go back on gluten for 6 months so he could retest. Not...
  21. Cara in Boston
    Since the biopsy has been done, you can start the gluten free diet while you are waiting for results. With your symptoms, I would give it a try no matter what the test results are . . . think of it as the "final" test. Keep in mind you may (temporarily) feel worse before you get better. No need to wait . . .
  22. Cara in Boston
    Really, the consequences can be really far-reaching - not just "digestive problems." Infertility, Lymphoma, Debilitating Arthritis, Anxiety, Depression, you don't know what you might develop or when it will happen. This is not something to take lightly. I don't know what it will take to get you to stop eating gluten (how about hair loss?) but really...
  23. Cara in Boston
    In the beginning, we talked personally to all the adults at the school who would come in contact with him. At the time, he was very shy. He would shake his head to turn down a food offer, but adults would keep asking him . . .thinking he was just being shy. I was actually surprised by how many times they would push food on him (not just at school, but...
  24. Cara in Boston
    Your parents and relatives may have celiac disease and simply have no outward symptoms like you. All first degree relatives should be tested. Many people have it and have no symptoms. It is not uncommon. The fact that it is more than a food sensitivity makes it important to stay away from gluten 100%. It is an autoimmune disease. If you continue...
  25. Cara in Boston
    If your biopsy is scheduled weeks away, see if you can get on the "on call" list. Kids need to cancel the procedure if they get a virus and have a fever or something. If your hospital does a call list, they can call you if something opens up sooner. It is hard to keep feeding your child something you know is harmful. Our diagnosis took 4 months from...
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