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MacieMay

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Everything posted by MacieMay

  1. MacieMay
    Those are negatives at the end. Thanks for the feedback.
  2. MacieMay
    Yes those are negatives. Thanks for the insight!
  3. MacieMay
    i would like to see if these new tests are an option for my daughter. does anyone know the name of them? What would I ask for? Thanks!!
  4. MacieMay
    These are my daughters gene testing results.... DQ2-,DQ8- It states... CELIAC RISK GENES NOT DETECTED! This was done through our GI Dr at Childrens Hospital Boston. Does this mean there is NO WAY she could be celiac or ever become celiac? That is what her Dr. told me.
  5. MacieMay
  6. MacieMay
    I think it sounds like your son is OK. My daughter (22 months)is not Celiac but glutent intolerant. She would get the WORSE diaper rashes and she would literally poop 6 - 8 times a day. She would cry in her sleep. Her belly would get distended and she was lactose intolerant. Just to name of few of her symptoms. Once we took gluten and lactose away it...
  7. MacieMay
    Skylark... How do you know that a simple gluten intolerance wouldn't cause tooth enamel defects, anemia and "failure to thrive"? I think i've read on here that a gluten-intolerance can cause the same symptoms as Celiac minus the villi destruction. I've been reading and reading and trying to get some answers as to what was happening with my daughter. She...
  8. MacieMay
    That's about when my daughters problems started (9 mos). Looking back at some old labs she had a low IGG and was border line Vitamin D deficient and now that I think about it she had one positive ANA. I don't know what the low IGG means I would have to look it up. Her labs stabilized pretty quickly once going gluten-free. I would have to agree with...
  9. MacieMay
    I'm sorry your husband has been laid off! I hope you win the lottery!! This sounds familar as to what we had going on, minus the tooth enamel loss. She is too little. We have been stickly gluten-free since Sept. she was 20 months. We were on and off gluten all summer because of the celiac testing. That was terrible!! Her blood work wouldn't be...
  10. MacieMay
    I don't know?? Some Dr.'s don't believe in going to outside testing. What about a Nurse Practioner? Is there any in the Pedi's practice? WE see the NP a lot!! I LOVE their approach. They are trained to treat holistically not just treat symptoms (like Dr's). It usually doesn't take as long to get an appointment either. Maybe if you can get in with...
  11. MacieMay
    Have you talked to her Pedi about the testing? If he does not beleive in the enterolab testing then maybe you could get him/her to run another gene panel ( a blood test is a blood test) and based on symptoms and positive genes testing he could diagnose her with Celiac. I don't recommend putting her back on gluten when she is doing so well and is so...
  12. MacieMay
    You say she has been found to be Glutent Intolerant not Celiac? Did her testing come back negative for Celiac? The reason I ask is because I have a toddler that has been diagnosed Glutent Intolerant (all of her Celiac testing came back negative, including gene testing). According to GI there is no way she can or will be Celiac. This makes me think that...
  13. MacieMay
    Is Namaste a gluten-free muffin mix? I've never heard of it. My daughter is pretty picky and has been terrible lately. I'm not sure I could get her to eat a muffin, no matter what it taste like. Did you try it?
  14. MacieMay
    Hi there, I was wondering if you've ever had your lesions biopsied? If so, what were the results? Thanks!
  15. MacieMay
    Has he had a MRI?
  16. MacieMay
    HI Norahsmommy, I didn't get a chance to read the above links but... I believe that my daughter can outgrow her gluten intolerance she is 22months. That's only if the tests prove to be right and she doesn't have undiagnosed Celiac. I plan on re-introducing it slowly when she 3 to see what happens. A cousin of mine had a gluten-intolerance when...
  17. MacieMay
    I have picky gluten-free toddler too. I feel your pain. She loves the Sam Mills corn pasta. We've tried the other pastas, even the tinkyada, we didn't like them. Rice and beans, rice and taco seasoned ground meat (chicken and beef). She LOVES tator tots and I make my own baked potatoe wedges (we call them our FF). Right now, at dinner she...
  18. MacieMay

    ARCHIVED New Here

    MacieMay replied to drgoogle's topic in Dermatitis Herpetiformis

    Oh Man!! Will you please share the results of your skin biopsy. I would ask for a copy of it. I've been trying to figure out this rash my 21 month old had that I SWEAR was a systemic reaction to gluten. She had it biopsied and it came back something different then DH and they ruled it out. But the thing is we went gluten-free the day she had the biopsy...
  19. MacieMay
    I have heard good things about a naturopath in No. Andover. Is that anywhere near you? I don't have personal experience but I've heard she is wonderful. She is right on 114 across from Merrimac college. You could do a google search. good luck!
  20. MacieMay
  21. MacieMay
    I have a similar story too. My daughter is 22 months now. She had the EXACT same symptoms going on when she was that age. I finally put it together when she went on whole milk and things got 100 times worse. She was lactose intolerant too. We did ALL testing (allergy, endoscopy, Celiac panel, and Gene) everything was negative. It is real hard to...
  22. MacieMay
    Hi Jaybee, I had heart palps but I have no issues with food. Mine were definitely stress related. I do not have them anymore. Do you think you could just be feeling them when you sit down to eat because that is when you are paying attention to them? When I had them I would have them throughout the day but only notice them at times when I slowed down...
  23. MacieMay
  24. MacieMay
    I should add... I don't think that any 4 year old is going to get, it is "OK to be different" they are not mature enough. 4 year olds are all about here and now. If that makes sense. I think its a great lesson but one she might not get until she is older. I bet if you could get your oldest or maybe even your husband to make some gluten-free food choices...
  25. MacieMay
    This is sad!! What a bummer!! In our house, we are ALL eating Gluten-free. I have an 21 month old (gluten-intolerant), a 6 year old and an 8 year old. My older girls can still eat pizza and macaroni and cheese at school or when we go out to eat. They adjusted fine with that. How do you explain to a toddler that she can't eat something that everyone...
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