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carecare

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Everything posted by carecare

  1. carecare
    Good luck next week. We are in a similar boat. Though, do you know if your tests were the deamidated gliadin IgG and IgA...because that will make a difference from what I've read/heard. If it was then it's more specific and higher chances of actually being celiac if the IgG is positive...like your son has. My son was high IgG deamidated gliadin only....
  2. carecare
    Thank you both. I know I hurt for them more than they probably hurt themselves. Tough being a Mamma. I asked the dr about genetic testing. Wasn't too keen on his response. He said "Well, in your case with your family history I am certain you would come up with the gene for celiac." So he didn't see a point in testing for the gene because it's not...
  3. carecare
    Doing the gluten challenge until their endoscopies on December 16th even though the dr said to start gluten 4-6 wks before. I just felt it should be longer (from what I've read so many people saying on the forums). Day one was yesterday (we've been gluten free since the beginning of August). Both boys ages almost 10 and 12 woke up feeling "yucky" and slept...
  4. carecare
    I met with the Ped. GI doctor today. He of course wouldn't say yes your son has celiac. Still the gold standard is the biopsy. I asked about genetic testing and yes they do it but he said with my family history he's certain it would come back with our family having the gene so he wasn't so apt to do it. After talking to him though I am leaning on the...
  5. carecare
    I agree....great responses and it has made me reevaluate how I have done things in this household (or should I say have not). Taking a box out and filling it with a lot of items that this gluten free household should not be using. Thanks for the kick in the butt! Glad to hear you have figured out how to keep your son as healthy as can be! CC
  6. carecare
    We had a busy day and I decided to take my son to his first restaurant since going gluten free at the end of July. We went to Happy Joes where they make a gluten free pizza. It was actually really good. Unfortunately, I was the one who got sick that night...and spent the evening in the bathroom. Two days later my son had some mouth sores but he also ate...
  7. carecare
    Thanks all for you replies. I appreciate them all . I'm going to visit her this weekend so I will have a good talk about what she should do next. I think a call to the kitchen staff or the dietician there at the school is in order. I'm sure they'll require a doctor's note so I'm going to convince her to get more testing a couple months down the road....
  8. carecare
    My friend's 12 yr old has dealt with pretty bad eczema over the years. He is severely allergic to peanuts and milk and other things but hasn't figured out what the reason for his eczema is. She's wondering if maybe doing a trial of gluten free could help him. If it was the gluten causing him to break out does anyone have an idea of how long it might possibly...
  9. carecare
    Yep, you are correct. I received a call from them today. They told me that because they don't test for gluten they can't say "gluten free" on the label but I was told they don't have any ingredients for which contain gluten so it would be gluten free...unless of course there was some cross contamination issues. He told me though that they take great care...
  10. carecare
    First I emailed them last week asking about their TruuMoo whole chocolate milk. Today I got this response: Although we do not have any gluten containing ingredients, we source some of our ingredients from Third Party Suppliers and they do notify us that their ingredients are Gluten-Free; however, this is based on information from our ingredient suppliers...
  11. carecare
    My daughter is not diagnosed...but I wish she was. She knows gluten bothers her...and while at home was eating a gluten light diet...except for the month of August I would say she was gluten free because we became a gluten free household....as my 11 yr old son had a positive blood test for which made me start gluten-free immediately...which resulted in his...
  12. carecare
    Best of luck! Yes, I hope he takes off growing too. My 11 yr old almost 12 had a "weak" positive as the pediatrician put it...and wants us to see the ped. gastro. Anyway, I decided to remove gluten immediately and he too has seen improvement...3 wks into it and he's muscle pain free. I did notice changes in his bowels too...as I think he was going more...
  13. carecare
    Do you know what celiac blood test you had done? Did you have a print out for yourself? I had never heard of false positives on the blood test...or if there was it was extremely rare. Did you have the deamidated gliadin IgG and IgA? I'm just curious. My son had a positive deamidated IgG...but the other two markers were negative. I decided to take him...
  14. carecare
    Does anyone have a good list of gluten free candies handy? I hadn't even thought about Halloween...something I'll have to be doing from now on. CC
  15. carecare
    My 11 yr old son tested positive on his blood test 3 wks ago. His deamidate IGg was high but his tissue transglutemate was negative. I decided to start a gluten free diet with him immediately and not wait the possible 2-3 months for a biopsy. I couldn't see putting him through pain every day to tell us something we already know. I am soooo happy I did...
  16. carecare
    I feel your pain. It was something we asked the colleges my daughter applied to last year. She just started college last week. She has not been diagnosed but knows gluten bothers her. Eating at home she was basically on a gluten light diet because she knew too much made her sick. I had blood work done a couple weeks ago...but should have known it probably...
  17. carecare
    Strange that you mention this. I have been gluten light for months but completely gluten free the last couple weeks. I was out of town with family and had heavy gluten intake our first day away. The next morning I woke up with left ear pain...like an ear infection pain deep inside. It was off and on that day...especially when I'd eat something. I also...
  18. carecare
    Really good article explaining the gene testing. Thanks. According to the article men are more likely to still get celiac even without the genetic markers. Interesting.
  19. carecare
    pain*in*my*gut...I've seen over and over people saying that even if you don't have the genes that say you might be predisposed to celiac you could still have it. I am sure there was someone on another thread that didn't have the genes but tested positive for celiac. The genes might just help you come to a better conclusion and understanding if you actually...
  20. carecare
    I have chosen not to do biopsies on my kids. It was considered...but in the end I could not foresee putting my 11 yr old through another 2 or more months of suffering (to wait stop eating gluten until a biopsy was done) when it could end now. I am very content with my decision because within days his mouth sores disappeared and his muscle pain is getting...
  21. carecare
    I'm really shocked that after your diagnosis that your ped. wasn't on board with testing him. Time to find another ped! It's commonly known that all first degree relatives should be automatically tested. I recently brought my 11 yr old son in to specifically get the celiac blood test because my husband is an undiagnosed celiac/gluten intolerant person...
  22. carecare
    Took my husband a good 6 months for his diarrhea to totally clear up. He knew it was less frequent but was still having bouts of it. Every time he'd think maybe he was glutened but he really wasn't. It just took that long for him to heal. His stomach pain/indigestion went away immediately going gluten free so he knew he had improved despite the D. The...
  23. carecare
    Thanks Everyone. The thing is he has grown some....just not consistantly on the growth chart. I was looking he went from 51% for his height to 43% and for his weight went from 35% to 16% (according to the dr sheets I found from appointment in the past..the 16% was from January)...and he hasn't gained any weight since January....which I feel isn't good....
  24. carecare
    You are so right....I was really actually reading it wrong. I guess most people would read it like I did though. Very misleading the way it was explained.
  25. carecare
    Open Original Shared Link Doesn't this just sound wrong? Everything I've read and researched seems to say you can't have any gluten what so ever if you are celiac. The leading dr at University of Chicago Celiac Disease Center says celiacs can have up to 10 mg of gluten a day safely. It doesn't come across as correct for everyone.
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