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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    If it is just one night, I would do it. If it is a week (or even a few days) I would be too nervous . . . unless I could go along as a chaperone. You could easily pack enough food for a day or two so that she wouldn't have to worry at all about cc. Check out the lunch kits from GoPicnic. I use them as inspiration and assemble my own for me and my son...
  2. Cara in Boston
    My doctor formally diagnosed me with "gluten intolerance" since my biopsy was negative. That is fine with me. With my son's positive biopsy, I know it is more likely to be actual celiac and I know to be on the lookout for related autoimmune conditions. Since the treatment is the same, I don't see the point of further testing. I will need to have periodic...
  3. Cara in Boston
    She has symptoms, a family history, and a positive blood test. Even if the biopsy is negative, I would go gluten free as soon as the procedure is over. For peace of mind, have them take a blood sample for the additional tests at the same time as the endoscopy so you can go gluten free as soon as possible. Again, don't assume she doesn't have it if the...
  4. Cara in Boston
    I like the Betty Crocker mixes and I think the "Cake Doctor" book is great. The more stuff you add, the more you can't tell there is anything different. I found that the cake mix seemed like a smaller amount than a regular box of mix . . . makes less cupcakes than you would expect. Now I just double it if I want to make a layer cake or a sheet cake....
  5. Cara in Boston
    My son was diagnosed last year at age 6. First, we went crazy and bought TONS of gluten-free food - things we don't even normally have in the house (cookies, junky cereal, etc.) - that didn't really work. Most of it didn't even taste that good, but if it said "GLUTEN FREE", I bought it. Then, we concentrated on just the things that he LOVES and...
  6. Cara in Boston
    My son is one of the people who tested positive ONLY on the IgG tests. His IgA tests were all normal and his total IgA levels were fine. His genetic test indicated a "low" probability of celiac. The first GI said he didn't have celiac. We took him to Children's Hospital for a second opinion and he was found positive on the biopsy. I would go for the...
  7. Cara in Boston
    I would urge you to get a copy of the test results so you can see if the proper tests were done (often the entire celiac panel is NOT done). Keep you child on gluten if you are going to seek a second opinion. Our first Pediatric GI said my son does NOT have celiac based on his genetic test (so just ignore his odd blood tests?) When I pressed him further...
  8. Cara in Boston
    I just want to say you are not alone. The behavior you describe is my son (also 7) EXACTLY! He is the best kid in the world on good days, but those are overshadowed by the bad. Tantrums over the smallest things, he hates us, wishes he was never born, everybody is mean to him, etc. He has also started throwing things and knocking over things. Consequences...
  9. Cara in Boston
    Unfortunately, the doctor in ATL, no matter how good, will not be able to do more thorough testing since you son is already gluten free. But, the rash certainly sounds like it could be DH (not sure, I don't have any experience with this) and if it is, a biopsy can be done on the blisters and THAT could give you a positive diagnosis. In the meantime...
  10. Cara in Boston
    I'm no doctor, but it looks like he DID have a positive blood test (gliadin antibody) when first tested. If he had a positive TTG also, it is likely he has celiac disease - or at the very least is gluten intolerant. My son had negative blood tests and positive biopsy. (He had/has almost no symptoms other than behavior and mood changes) I had all the...
  11. Cara in Boston
    Maybe someone with more experience can chime in, but it looks like you got ONE of the 5-8 tests they usually give for celiac disease. The one you got is the most unreliable because they didn't check to see if he makes enough IgA in the first place (total IgA). My son, age 7 (diagnosed by biopsy) was negative on all IgA tests and only showed "inconclusive...
  12. Cara in Boston
    The antibiotics shouldn't change the biopsy results. However, our hospital wouldn't do the procedure if a child had a fever or other symptoms of illness. They would re-schedule. I only know this because we were on the "stand-by" list to take an appointment if someone else got re-scheduled. Hope you can get it cleared up in time. Cara
  13. Cara in Boston
    When you say, "they did all the blood work" . . . are you certain they tested (correctly) for Celiac? You should get a copy and look for the specific tests and make sure they were all done. The symptoms certainly sound like celiac and often, blood tests are falsely negative in young children. If he is doing better on the GFD, you may already have your...
  14. Cara in Boston
    Hi Jessica - Welcome. The first couple of weeks are difficult - you have to begin to really think about the food you are eating. But the good news is that in a couple of weeks you will start to feel great - it will be noticeable and you will realize that giving up gluten is completely and totally worth the hassle. After a few more weeks, it is no...
  15. Cara in Boston
    My son was diagnosed at age 6 and his only symptom (we thought) was an extreme change in behavior. Zero GI symptoms, no complaints, etc. He was tall for his age, so I never noticed that his growth slowed down. But, after being diagnosed and going gluten free, he shot up several inches in the first month. He was back on his original growth curve. You...
  16. Cara in Boston
    I'm no doctor, but blunting of the villi IS CELIAC. The blood tests - especially in young children - are not accurate and frequently show a false positive. The fact that he felt better gluten free should make it perfectly clear. Glad you have your pediatrician on your side and good for you for not just assuming that the doctor is right. Our first GI said...
  17. Cara in Boston
    Welcome - The only tip I can add is to take this time before your appointment to read all you can about Celiac Disease so that you will be well informed. Just in case you get an idiot doctor who does not know enough about it or who hasn't had a single patient with it . . . the better informed you are, the better you will be able to understand what is...
  18. Cara in Boston
    My son and I went gluten free a year ago. He was fine. I had about 2 weeks of feeling MUCH worse (irritable, headache, tired, etc.). Doctor said there is a group of people who will experience withdrawal symptoms when gluten is removed. I guess I was one of them. After that, it got a little better each day. . . . and then I just felt good - every day...
  19. Cara in Boston
    We use crushed cereal (chex, gluten-free Rice Krispees, etc.) all the time instead of Panko. It does taste different - maybe sweeter? I also use crushed gluten-free Pretzels . . . sometimes I mix the two for a balance. I bought a mini food processor just to make crumbs - it was inexpensive and works great. You can make a whole bunch and freeze it to use...
  20. Cara in Boston
    Your symptoms sound very much like you could have Celiac Disease or Gluten Intolerance. If you feel better avoiding gluten, then avoid gluten. You do not need permission from a doctor to follow the gluten-free diet and if you are somehow wrong, the diet is not unhealthy, so no harm done. However, if you want to pursue getting tested, you need to resume...
  21. Cara in Boston
    My son's levels didn't go down after 6 months. We thought we had mastered the diet, but now we are not so sure. His symptoms are almost 100% behavioral so it is difficult to tell sometimes if he is just being bad, or if he is being gluten-bad . . . The MD told us to "step it up" a bit - no more gluten-free foods that have been "processed in a facility...
  22. Cara in Boston
    Measure her. Not only did my son feel so much better (and he was so pleasant to be around) but he shot up several inches within weeks of being gluten free. He was so impressed when he saw how fast the marks on the wall changed. Cara
  23. Cara in Boston
    My doctor said 4-6 MONTHS of eating a "regular" amount of gluten daily before going for testing - this was after a short time being gluten free (2 weeks). I'm afraid you would be wasting your money if you tried to get tested after just a couple of weeks. (and perhaps your doctor is not as knowledgeable as you would like to think.) If you already know...
  24. Cara in Boston
    My son gets dark circles under his eyes when he has been glutened . . . he also tends to get a rash around his mouth - looks like very chapped lips - but it comes on suddenly and takes days to heal. His only real symptom of celiac disease is a marked change in behavior - we get tantrums, frustration, anger, mood swings, etc. It all lasts about a week. ...
  25. Cara in Boston
    I was surprised how many adults simply don't listen to a child when they say "no thank you" . . . My son (7) had a bracelet that he wore in the beginning. He is very shy. He would shake his head no when offered food but (strangely) people would persist - insist even - that he have a treat. With the bracelet, he could just show it and that would usually...
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