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averyevansmom

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Everything posted by averyevansmom

  1. averyevansmom
    Thanks everyone so much for your insight. The results can be so confusing to interpret. I have put in a call to the nurse at Enterolab. Hopefully I get a call back soon. My son has been gluten free since mid January. He had an upper endo (biopsy) as well as colonoscopy done early January. At that time his iron levels were critically low (8) normal range being...
  2. averyevansmom
    It's been a while since my last post. Just got my son's results. Does anyone have any insight? Does it mean what I think it means? That I haven't been fighting the doc's all this time for nothing? Thanks for anyone's help in advance. Becky Gluten Sensitivity Gene Test HLA-DQB1 Molecular analysis, Allele 1 0603 HLA-DQB1 Molecular analysis...
  3. averyevansmom
    Will he react to tiny amounts of whey or something else that he never reacted to before? I think it may have been the huge amount of broccoli he had last week. He had it three days in a row and he has a huge bowl off it with supper. I've not let him have it since and he had two normal bm's yesterday. I also have not given him his iron (feel rotten about that...
  4. averyevansmom
    Does anyone's children have bouts of unexplained D (pasty not loose-watery) after being on the diet for a while? He was doing so well. Is this common or a fluke. I know or am pretty certain he has not been glutened. I've been keeping a food journal, but he's been having D off and on the past week week and a half. I'm starting to think maybe I'm barking up...
  5. averyevansmom
    My husband remembers giving it to him last week and then again last night. He's just been kinda off all weekend. I never liked the idea of the protein anyway, he's only 3. I know my husband probably only put a small amount in his rice milk, but I wonder if it was enough for a reaction. He just gets such a kick out of it. He's not allergic to milk, but we...
  6. averyevansmom
    I have an unusual queation. My husband will take the kids downstairs to the gym when he worksout and the kids think they workout as well. When they come up, my husband makes his protein shake, well of course the kids want one. He makes then a small one of course. My question being, since my son cannot handle any dairy other than hard cheese, and this is ...
  7. averyevansmom
    Everyone here is so awesome! Thanks a bunch. I received a response from the RN at Enterolab. I guess Dr. Fine is out of state. She was very heartfelt and helpful with her answers. My response to people from now on will just have to be to pi** off if they don't get it or don't want to. I think the biggest hurdle were my in-laws. They're set in their ways and...
  8. averyevansmom
    I've been driving myself nuts with all this. I guess my biggest worry is what people are going to think. I guess I have to get over that. I've also read about the gene theory. I try to read as much as possible and sometimes there's so much contradiction. It's hard to figure it all out. I've read that inflammation in the duodenum (small intestine) is found...
  9. averyevansmom
    Hi Robbin and thank you I am considering the enterolab test. However I am curious as to why they can't "diagnose". I sent an email to them asking this question tonight. In the meantime, if anyone has the answer for me I'd appreciate it. The diet is the only thing that has made my son feel better. Don't get me wrong, he has his ups and downs, and I can...
  10. averyevansmom
    My 3 yo had two gene tests run by his ped gi at Children's in Boston. Both were negative. The doctor said because they are both negative the likelyhood of Celiac is 0%. I've read there could still be a very small percentage that have celiac disease even after negative results. He said continue with the diet because it works but at this point we cannot officially...
  11. averyevansmom
    Very interesting, I'll have to look into that. I'll be calling the doc on Monday if they aren't gone. In the meantime I'm gonna have to pick up new vitamins for him since he takes one immediately after he takes his nasty liquid iron. I'll probably head up to Walmart after he gets out of his Jumping Beans class today. Lil Critters Gummi Vites? Okay, got it...
  12. averyevansmom
    Yeah, I guess I do need to call my doctor. If by Monday they are still hanging around, then I'll call. I have to reschedule my yearly anyway. Thanks guys. What a pain in the you know what. I'll have to pick up some of those gummi vites. I'm sure the kids will love them.
  13. averyevansmom
    These things are still hanging on and aren't going anywhere. They are so itchy and the big one hurts. What gives. It's been 8 days. Help.
  14. averyevansmom
    I've never had hives so that could be a possibility. Do you know how long they last? I've had these suckers for 8 days and counting and they show no signs of fading. They are so itchy and the big one kinda hurts.
  15. averyevansmom
    Thanks Jerseyangel for making me feel better. His iron level was 8 back in December and will hopefully be retested when we bring him back to Boston Children's on the 16th of this month. I have another question for you regarding myself. I'm the only family member who has followed the diet since it's inception. I took my daughter to Starbucks last week for...
  16. averyevansmom
    Jerseyangel, At this time my little guy (3yo) cannot have milk, ice cream or yogurt but can tolerate most other dairy such as cheeses. He's been gluten-free approximately 6-8 weeks. I'm assuming after you are gluten-free for a period of time you become more sensitive to gluten, even small amounts, am I wrong? I'm on hold with Centrum right now to find...
  17. averyevansmom
    I read their website last nigh that states none of their dressings are gluten-free so I called and the girl said they cannot say that they are all gluten free because they are all processed on the same lines. The lines are washed and sterilized either between, or processed at the end of the day, but there is still a risk of cross contamination so they cannot...
  18. averyevansmom
    It's weird beacause I've never had any real "problems". My son on the other hand was the sick one. I always thought my bathroom habits were the norm until I stopped eating gluten. Anyway, never had skin problems either. Not dry skin, excema, acne, nothing, then I eat a scone last wednesday and boom, all these red dots appear like magic almost overnight....
  19. averyevansmom
    It doesn't burn but it does itch. I ignore it but if something touches it, like my clothes rub against it hard enough, it will itch and I need to scratch. I figure I have about 10-15 of these little buggers that I can see. The one on my hip really puzzles me though.
  20. averyevansmom
    I took my daugher to Starbucks for a treat the other night since she does not have celiac disease. She does follow the gluten-free diet at home however. I had a scone and a Chai tea latte. Later that night I had an itch on my upper thigh just below my hip and there was this oblong shaped bumpy looking rashy thing. Nothing much in the middle. Then all these...
  21. averyevansmom
    Chrissy Funny, you must have been replying the same time I was. I thought inflammation was thought to be found with celiac. Thanks. Wanted to make sure it was something I didn't just make up. Evan (Bubba) had a nice BM tonight.Yeah. This a.m not so much, could've be residual yogurt in his system though. Do any of you or your kids have "normal" bm's every...
  22. averyevansmom
    Thank you Michael and Nisla Just spoke to the doctor and reiterated what the Hasbro doc told me after the biopsy and he thought it was interesting, especially the white lesions. I also asked if everything was non-positive, why was Evan responding so well to the diet. He was surprised to hear that. He said that was pretty much a confirmation. He was also...
  23. averyevansmom
    I heard from Children's yesterday via voice mail. They reviewed my sons biopsy slides and had the same findings of inflammation of the duodenum (small intenstine) as Hasbro. However, when I do speak to the Dr. I will mention that when the doctor performing the biopsy at Hasbro came out of the operating room, she told my husband and I that she saw 3 white...
  24. averyevansmom
    Becky6 Thanks for the encouragement. I went out last night and gluten challenged myself and have been sick all day so I think I really need to be checked out further. If not by my doctor then maybe by enterolab. I may ask him to do the gene testing to see if I carry it at the very least. Wednesday I'm taking the kids to the Mystic Acquarium and hoping...
  25. averyevansmom
    I took my son out for breakfast Thursday AND Friday like a fool. He only had eggs and fruit. He's had pasty poop ever since. I feel like such a sh*t. He was doing so great with only an accident here and there in 5 weeks. I feel like I should have really known much better. Becky
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