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kenyonsmommy

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Everything posted by kenyonsmommy

  1. kenyonsmommy

    Happy birthday and may God bless you today!

  2. kenyonsmommy
    I had to have another blood test, where he checked for other antibodies. I'm not sure what exactly, but he told me it was negative for celiac. He did alot of research to figure out what to do, as I was the first patient he has had with Selective IgA deficiency, and my son was his first pediatric celiac patient, he had some adults, but no children. He was...
  3. kenyonsmommy
    It concerns me that part of a test could come back positive yet they would still say negative results. I was tested last year, as was my father, after my son was diagnosed. Both came back as "negative". I have the same dr as my son, and since he was so proactive in diagnosing my son, I have to trust him on the bloodwork. He did find that I have selective...
  4. kenyonsmommy
    I already know he is gluten intolerant, he was diagnosed last year by blood and biopsy. I think he will have to have a biopsy of the DH. The rash has now gotten worse, the blisters are larger and are cover his groin, mostly on his testicles. He has not been itching them and does not complian about them, but they look awful. I asked for a referral to the...
  5. kenyonsmommy
    My son just had his three year old check up, where they retested his blood for IgA. Its been 7 months since his diagnosis. The post card came back that his level was 1.0, which they marked with a big red smiley face and circled "were within normal limits". Does anyone know what normal limits are? I was surprised that they came back low, because recently...
  6. kenyonsmommy
    My son is almost three and has been gluten-free for almost 5 months. It took almost a month for them to look normal. He still goes back and forth between really bad smelly mushy poop to solid normal poop. This is probably because mistakes are made every once in a while, we just had an issue with sherbet, which he loves, but it seems Perry's has malt flavoring...
  7. kenyonsmommy
    I forgot to mention that they also have gluten-free pasta dinners during those hours too. For anyone familiar with the area, it is on route 96 going east about a mile past eastview mall on the right. I'm hoping they get enough business to continue, It has been a big deal for us to be able to order pizza again!
  8. kenyonsmommy
    For anyone near Rochester, Ny, there is a pizza place in Victor called Leonardo's that is now making gluten-free pizza . The owners have a child who is on a gluten-free diet so they created a pizza that is pretty good, I've tried it and its amost like regular pizza. It comes as a small for about 10 bucks. They only sell it on Fri and Sat nights from 4...
  9. kenyonsmommy
    I recently learned that our insurance company, preferred care, will reimburse us up to 2,500.00 a year for my sons gluten free foods. i confirmed this with preferred care and now my doctor is calling them to verify that he does have celiac. Has anyone used this before? I'm wondering what guidelines they will have for the food, if anyone has had problems...
  10. kenyonsmommy
    Glad to hear you both made it through, I know it was difficult. Hope you get good news with your results!
  11. kenyonsmommy
    Thats great, thanks!!
  12. kenyonsmommy
    anybody know anything about Friendly's ice cream?
  13. kenyonsmommy
    I was told that the new boxes of Trix are gluten free, what ever that means. I saw some different looking boxes big lots one day, these boxes did not look like the one I bought, they were not as coloful I guess. We dont eat cocoa puffs, but I did find the Dora the explorer cinnamon stars today that are gluten-free as well. they were pretty good. I'd get...
  14. kenyonsmommy
    I can tell you that my son, who started having symptoms in December 05 and was finally diagnosed in May, was MISERABLE. He had been a very happy kid, easy going and turned inot a very unhappy child. he cried all the time over everything. When he turned two this January, I thought maybe it had something to do with just being two, but I have a 5 year old...
  15. kenyonsmommy
    It is absolutely not wrong for you to want to know what is wrong with your son and how much damage has been done to his body. In the long term, the more knowledge you have, the better you can help him. The whole procedure did not take that long, and I swear he had no knowledge of it, other than he got a toy afterwards. Bring some very chilled juice, or...
  16. kenyonsmommy
    My daughter, who is not celiac, just "graduated" from preschool last week and at the school party I spoke with her teacher about when we send our son, who is celiac, to school in about a year. She told me that she would keep a small bin in the back with a variety of snacks that I could bring in, then she would just match up as best she could to what the...
  17. kenyonsmommy
    My son is 2 and had his first endoscopy in April. He had his at Strong Hospital in Rochester, NY, which is a pretty good place. They let me go back with him to the operating room, and I held his hand while they gave him the gas. He was out in seconds. they put the IV in after that. I cried the most when I saw him lying there, he just looked so helpless...
  18. kenyonsmommy
    I have, I actually bought the trix cereal, but I can not seem to find the dora cereal. he tried the Trix, he is extremely picky, and he has eaten a few bites. getting him to try something new is very hard, myself, husband and daughter all sat down one evening and had a bowl of trix with my son. he ate it, but I just wish I could give him a better variety...
  19. kenyonsmommy
    That really stinks... I got so excited over a cereal. Who knew this would be my source of excitement these days. I guess the moral of the day for me would be if it looks to good to be true, it really is. Thanks for the clarification.
  20. kenyonsmommy
    I was looking at the ingredients on some mainstream cereals today and a few, such as captain crunch superman edt. did not list wheat or gluten as an allergy. If it lists malt, would not this be considered a hidden gluten? Are the manufacturers supposed to take into account those hidden sources such as malt, natural/artifical flavorings? I also looked...
  21. kenyonsmommy
    The oncologist told us it was a loop? but that it would work itself out. It was in his large intestine. He has gained significant weight and does not seem to be in any pain. I will ask his ped about that though, that is very interesting info, thanks.
  22. kenyonsmommy
    I ahve a very similar story to yours my son was 28months when he was diagnosed, he started vomiting and losing weight at 23 months, all of the sudden. I had him in the dr about every week, for a few eeks, while my regular ped was on vacation, the other drs told me he had a stomach bug. so after almost 6 weeks of this, my own dr gave my son a reflux med...
  23. kenyonsmommy
    We just had a party today at my house for my father. So......today I made glutne free cupcakes and regular cupcakes. I made my own frosting, just the butter cream kind. I kept two of the gluten-free cupcakes for my son and froze the rest. I also froze some of the frosting, I made sure I frosted his first, then I put some on a ziplock bag before I frosted...
  24. kenyonsmommy
    yeah, he learned the "I dont like you" already from his 5 year old sister, but he screws it up and says "I don't like me mommy". I'm glad to hear I am not alone in the "making things worse" department, but you are right, I was just happy that he was still alive. Two weeks before he had his biopsy, they did a CAT scan because the Ped GI thought he...
  25. kenyonsmommy
    I'll have to read up on this, thanks for the info. It s been hard trying to muddle through this just on internet power alone. I want, but I know I will not get, someone to just come to my house and say "OK, this is what you have to do, what to change, what to eat, etc. I love my doctor,but After the diagnosis, the doctors were pretty much not helpful....
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