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Mamato2boys

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Everything posted by Mamato2boys

  1. Mamato2boys
    Thanks for reading my post, and for being concerned enough to post back to me. If I did have Munchausen by Proxy, then I guess I'm in good company here, don't you think, since we all share such similar stories ? Shoo fly.
  2. Mamato2boys
    My ethnic background is Irish, French Canadian, Scottish, and Welsh. My DH is Pennsylvania Dutch and Irish (I'm not sure what else). We just recently found out our oldest son is gluten sensitive and has two genes predisposing him of that - one from me, one from DH. I was VERY surprised to find out we each have at least one GS gene.
  3. Mamato2boys
    Oh I didn't realize you could call and ask them questions. Thanks for that !
  4. Mamato2boys
    Vicky - I'm still stunned to hear how common it is for doctors to say that diarrhea is "normal" for some kids. Gimme a freakin' break !! I don't think I'll ever get used to that. It just seems so odd to me how rigid doctors are and how unwilling they are to think outside the box. If they can't find an answer that fits the medical model, then the issue that...
  5. Mamato2boys
    So...I read on another post that the subtype under "serologic equivalent" has specific meaning. Another poster had subtype 6, and someone said that meant they could have neurological problems with continued gluten exposure. This was Ryan's result: Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5) It went on to explain that he had two genes predisposing...
  6. Mamato2boys
    You may have seen my post that went over Ryan's whole history - Ryan used to cry whenever he knew it was time to change his diaper because it always hurt him so badly (that's when he was drinking soy milk and had the diaper rash from he** because of it). I'm so sorry your son goes through that too. Let me know what your test results are !
  7. Mamato2boys
    Oh Kristie.....what an absolutely HORRIFFIC story !!! I am so sorry you and your son had to go through that ! I'm really glad he's much better now - good for you for sticking to your guns !
  8. Mamato2boys
    We're getting close. In the next day or so he'll finish up the last of his Rice Dream, so I'll start him on the gluten-free Wild Oats rice milk and need to re-stock snacks and lunch ideas for Ryan. I found some hot dogs at Walmart that are organic and appear to be gluten-free by Applewood Farms. I also pack him gluten-free/DF Ian's chicken nuggets, safe whole...
  9. Mamato2boys
    That brought tears to my eyes. Thank you so much for that. I've very often questioned my sanity during this journey (and still do, sometimes). I was so afraid that if I DIDN'T fight and keep going, that Ryan would end up being very sick down the road. The guilt of that, knowing I could have possibly prevented it, would eat me up inside and haunt me to my...
  10. Mamato2boys
    This is a double-post, of sorts. I felt the need to talk about my (and my son's) experience with "well educated" doctors. The first sign that he might have a problem came at five months. He was exclusively breast fed up to that point, but I started having supply issues. Begrudingly, I sent a bottle of milk-based formula with him to his caregiver. After...
  11. Mamato2boys
    I've been dealing with this issue myself ever since I put Ryan in daycare at 1 year of age (as you know all too well). I feel your pain. I'm glad to hear that the teacher seems to be so open to helping you. Attitude among teachers in that regard seems to be improving as allergies are becoming more common. I've found that what helps them "get it" is when...
  12. Mamato2boys
    I think that WAS over a year ago, Vicky...in fact, I know it was. He was at his first daycare back then. Remember that horrible diaper rash he was having, and how he'd start to cry as soon as he knew his diaper was going to get changed because it was so painful for him ? I think even he remembers - to this day if he gets even the slightest diaper rash he...
  13. Mamato2boys
    Ahhhhh....so stupidity ISN'T just localized to our ped GI office ? "Diarrhea of infancy".....GIMME A FLIPPIN' BREAK !!! One of the benefits to my job (I monitor phone calls between physicians, among other things), is sometimes I get free advice, unbeknownst to them. I heard a call between a doctor and another of the GI's here at the university...
  14. Mamato2boys
    I've heard over and over that I should just let him do it when he's ready - which is what I've been doing. I just picture packing him up for college and asking him if he's sure he's packed enough pull-ups. Thanks for the advice. I'm sure you understand my frustration.
  15. Mamato2boys
    Maybe I'm grasping at straws here...I don't know how many of you have/had toddlers that were diagnosed with celiac's/gluten sensitivity. My oldest will be 3 in just a couple weeks, and absolutely positively WILL NOT potty train. His main gluten symptom is diarrhea/soft stools. He'll pee in the potty just fine - even standing to pee. This isn't regression...
  16. Mamato2boys
    I TOTALLY agree. I can't believe that would be acceptable to ANY doctor !
  17. Mamato2boys
    The other thing that really killed me is her "and the diet REALLY sucks" comment. Boy - I'd love to hear what she tells her patients who have "confirmed" cases of celiac's (in her mind). Excuse me ??? You weren't exactly giving me a lot of other options here ! I emailed the woman TWICE (we work for the same hospital) asking what direction we should go in...
  18. Mamato2boys
    "Toddler's diarrhea" ??? Sounds like a BS diagnosis if you ask me - about as bad as the "some kids never have normal stools and we don't know why" line I got.
  19. Mamato2boys
    Thank you all so much for the kind words and support ! I loved the "poop patrol" characterization ! LOL !! That's exactly how I feel oftentimes. In stark contrast to the GI, we have a wonderful pediatrician. He wasn't sure about EnteroLab simply because he really doesn't have much experience with them, but he definitely encouraged us to try the diet to...
  20. Mamato2boys
    I'll try to shorten this very long story as much as possible. My almost three year old son has a long history of allergies to eggs & milk. He also has a very long history of chronic diarrhea - basically starting when he was about a year old. His growth has always been just fine, and he's always met or exceeded milestones. I gave up on allergists who claimed...
  21. Mamato2boys
    As an update - I spoke with my son's pediatrician and told him I was considering trying an elimination diet in the near future. I'm currently 36 weeks pregnant, so it may have to wait until after the baby's born. At any rate, I asked if he would be willing to document my findings so the daycare could "legitimately" allow me to custom-make a special diet for...
  22. Mamato2boys
    Vicky, I can't believe I didn't think of that angle - just trying the diet and then getting his pedi to document for me. Talk about overlooking the glaringly obvious !! You are so right - I think he would be more than happy to help out with that. I am so fortunate to have a true gem for a pediatrician ! I'm literally sitting here with my mouth open because...
  23. Mamato2boys
    Right - and that's the thing - things he "should" react to, he doesn't seem to, and things he "shouldn't" react to (in other words, hasn't in the past) he'll occasionally seem to react to. I'm suspecting he's having delayed reactions - but exactly to what, I'm not sure of.
  24. Mamato2boys
    You're not being obnoxious at all - I really appreciate your input, as well as everyone else's. I know that you're right about "positive" foods not necessarily giving your problems. One food he tested positive for was peanuts and he's never had a problem with those or any other nut. That always confused me, so I'm glad you mentioned that. So if...
  25. Mamato2boys
    I just wanted to add that there are a couple reasons I'm not going right to an elimination diet (though I think trying that does make absolute sense): 1. He's in daycare and although I do have some control over his diet, I don't have the kind of control that I could have if I didn't have to work full-time. He eats some of their food, and some food...
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