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melikamaui

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Everything posted by melikamaui

  1. melikamaui
    I know that it's impossible to make someone do what they don't want to do, but I thought maybe some of you might have advice in regards to getting reluctant family members to test for celiac disease. I'm pretty certain I can pin point how celiac disease came down through the last 3 generations. Both of my sons have it, and I know that I got it from...
  2. melikamaui
    That's good advice Laura. Thanks!
  3. melikamaui
    I agree with the others. Why suffer? I had to make the same choice. My son is a diagnosed celiac, and my first test was negative. A year later (just last week) I had the genetic test done, and it was positive for DQ2. That was enough for me and my doctor. I have so many symptoms and have suffered for years. I improve on the gluten-free diet, my son...
  4. melikamaui
    Our local Ruby's restaurant now carries Udi's gluten-free burger buns. I had one and it was pretty good!
  5. melikamaui
    I'm a vegetarian. I do eat eggs, but no meat, dairy or soy. I make a lot of green smoothies (veggies and fruits together with flax seeds, coconut and dulse). I also make a lot of rice and beans. We do eat gluten-free bread which contain eggs, and make sandwiches with those. Here's what I ate yesterday... Breakfast - gluten-free waffles with fruit...
  6. melikamaui
    I agree with you. My son has celiac disease and I know he has a much harder road ahead of him because of that. However, I think for the general public an umbrella term would be helpful. I have friends who suddenly became terrified of hurting my son because of his diagnosis. Sometimes I think the word "disease" really scares people. A blanket term like...
  7. melikamaui
    That's very helpful, thanks!
  8. melikamaui
    DQ2 heterozygous, Increased Risk 10X, Relative Risk HIGH What do/does the other risk alleles mean? I don't understand that part at all. Thanks for any help! Melika
  9. melikamaui
    Are the blood antibody tests the tests that you need to be on the gluten challenge for? If so, no. We can't do a challenge with him, he is crazy sensitive. He got cc'd awhile ago (still haven't figured out how) and he was really sick for 8 days. He lost 2 pounds from diarrhea and vomiting. Our doctor agreed that a gluten challenge isn't necessary with...
  10. melikamaui
    I think I get it now. Kareng, would you mind looking at my son's genetic test results posted in the Pre-Diagnosis forum? Can you tell from looking at it if he has more than one gene? Thanks so much, Melika
  11. melikamaui
    So far my youngest son is the only person in our family to test positive for Celiac Disease. He, so far, is the only one to carry the genes. I had a test a year ago that came back negative, and am currently awaiting results of a new genetic test for myself as well as my oldest son. So my question is - If my husband and I are both negative for the celiac...
  12. melikamaui
    I think either way you're fine. Gluten intolerance is very serious. I think people tend to hear the word "disease" and take it more seriously, but gluten intolerance is serious as well. My first test results came back negative, but my son has celiac disease. I have been referring to myself as "gluten intolerant" while explaining to people that my son...
  13. melikamaui
    Anyone? Bueller?...
  14. melikamaui
    My son is also a vomiter. He does get diarrhea along with the vomiting as well though. I'm sorry about what you are going through with your daughter. You're in the right place here. Everyone here totally understands. Best of luck on the test results! Melika
  15. melikamaui
    I took him to his doctor to make sure it wasn't a bug. She was pretty convinced it wasn't. He's doing much better off dairy. Though you are right, dairy is another HUGE category of food to avoid. It has complicated our already complicated lives!
  16. melikamaui
    Can anyone help me figure out this genetic panel? These are my son's results. I know he has a very high chance of having celiac disease, and his doctor believes that he does in fact have it, she diagnosed him already. I'd just like to know what each of these things stand for. Thanks for any help. 002.5 (HLA OOA1*05:00B1"(201) and other non-risk...
  17. melikamaui
    I had jury duty last month. I brought some water, fruit, homemade trail mix, a hard boiled egg, and some gluten-free pasta in a tupperware-type container. It lasted me all day and thankfully after that my jury service was done! Melika
  18. melikamaui
    It scares me that a doctor would even consider a gluten challenge on a diagnosed celiac. The fact that he thinks this is "okay" upsets me even further. If I were you, I'd start looking for a new doc.
  19. melikamaui
    It was my understanding that NO Sunspire products are gluten free. I called the company and they said they cannot guarantee that any of their products are safe for anyone on a gluten free diet. I was really bummed because we loved Sundrops!
  20. melikamaui
    Thanks everyone. We were doing zero processed foods for awhile and nothing changed. Just yesterday I let the boys pick out some gluten-free treats from Whole Foods that we used to have all the time. (Cookies, cereal, etc) I guess I'll see if he worsens or improves.
  21. melikamaui
    I'm in the U.S. And I did decided to just completely take him off dairy and see if he improves. I took him to his doc today and she agreed. It's so nice to have a doctor who *gets* celiac disease. She really understands what we are going through and is gluten-free herself!
  22. melikamaui
    I've been wondering about this. My hubbie and I have not been tested yet. Does one of us HAVE to carry the gene because our son has celiac disease? Or could it come from somewhere else in the family, ie a grandmother or other relative?
  23. melikamaui
    Ditto! It's not worth the risk. Not at all. Finding gluten-free dog food that my puppies actually like has been a chore, but even they have to sacrifice for the greater good. If they eat something glutenous and then lick my son??? No way. My house. My family. My dogs. My rules. NO GLUTEN.
  24. melikamaui
    Thanks for the advice! And thanks for the compliments on my "baby". He's my 6 year old celiac now. Looking at this picture just makes me so happy I just had to use it. Melika
  25. melikamaui
    I'm dealing with similar issues. My MIL seems to think that this is something my son will outgrow. She keeps telling us to have "a positive attitude and this won't be forever". I want to bang my head on the nearest hard surface! YES, it will be forever. A positive attitude is great but it will not change that. I want to send a book or two to them...
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