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CeliacMommaX2 last won the day on March 8 2018

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  1. We have not yet encountered this, but since we are expecting a baby, we anticipate people wanting to bring food to us.  I have no problem turning people down when they ask, but I'm worried that someone will make us something "gluten free" in their contaminated kitchen and just come by.  Should I say "thank you" and not say anything or should I turn down their thoughtfulness?


    I'd love others' thoughts on this!  Thanks!

  2. When you fill out paperwork for medical, school, camp, etc info, do you list "gluten" as an allergy?  I want people to be aware and wonder if mis-informing people (by saying she has a gluten allergy) would keep my daughter safer in various environments.  I also wonder if I need to list wheat, barley, and rye specifically since there are still many people who don't know what gluten is...


  3. Hooray! It took two years to get it into the normal range, from over 16x the upper limit of normal at diagnosis. Both DGPs are normal now too. We were stuck at low-positive tTG for a long time.

    What finally did it was eliminating several GFCO-certified products that had detectable gluten at levels well under 20ppm. Once we did that, we got her tTG into the normal range within eight weeks. Phew, what a relief! And she is doing great - the difference in her mood with this last decrease in tTG is very noticeable. She's never been this happy in her entire life!

    What does "GFCO-certified" mean?  Thanks... I'm still new at this!

  4. My 3 year old has had diarrhea & has been complaining of an upset stomach with very little appetite for almost 4 days now.  The diarrhea the first day was the worst and now the diarrhea has gotten better, but is not gone and he's still complaining of an upset stomach and not eating much.  Is this just a stomach virus?  We were out of town just before this hit, so we were in a home that was not gluten free (yet I fed him all gluten-free foods-mostly things I packed from home).


    I'm just not sure what to look for in a gluten reaction for him. 


    Thanks for your help!

  5. I'm not sure if this is the best place to post this question since I do not have celiac myself.


    I have 2 children who have celiac, so I feel like the odds of another would be high (anyone know if that's the case?)  My husband and I both have tested negative (we have NOT done any genetic testing).  Our household is strictly gluten free now. 


    Is there any danger to me and the baby if I go ahead and remain gluten free for the pregnancy and post-partum time? 

    Is there any research on when to introduce gluten or can I just hold off on gluten until the baby is older and ready to do a gluten trial to test for celiac?


    Thank you!

  6. I'm trying to figure out what to make her cake with.  She wants a "vanilla" cake.  Should I use Pamela's "classic vanilla cake mix" or Betty Crocker's yellow gluten-free cake mix?  Or is there a good recipe out there that you'd recommend (she's also dairy free right now).  I just want her to have delicious cake for her first gluten-free birthday!


    Thank you for your help!

  7. I have always shopped for store brands for the most part (usually Meijer and some Target) and saw on Meijer's website that they have a list of gluten free store brand products, but of course a disclamer saying they cannot speak to the possibility of cross-contamination. 


    Is it safe to continue to buy store brands or do I need to switch to name brand companies on everything?


    I usually buy ketchup, chex, pasta sauce, cheese, applesauce, and juice in the Meijer brand.


    Thank you!

  8. How do I go about getting an appointment at a celiac center (University of Chicago or Mayo...).  Do we get a referral or just call and ask for an appointment?  Would we just get one appointment or would we need to ask for one for each kid?


    We have a diagnosis for my daughter and would just be interested in learning more and making sure we are doing everything we should as far as her healing goes and other possible food sensitivities.  My son (3) has positive blood work, but negative biopsy, so we'd be interested in if we should persue a diagnosis for him.  And we'd love to discuss what to do about our baby and possible gluten challenge in the future to see if she has celiac too. 




  9. We have found gluten exposure to impact continence. This was true for our super silly girl and is one of her accommodations at school...she gets irritable bladder issues that make her go frequently. It was also true for her younger brother when he was very young, as well as being true for myself.

    That sounds like what we're dealing with... Will it get better as she heals and is gluten free for longer? 

  10. Thank you for all of your wonderful replies!  I will be sure to keep a stash of meals & treats in our freezer.  Luckily we have a big chest freezer that's close to empty now that I've given away all of our "gluten food".  TIme to invest in a good cooler!  Any tips on snacks I could have on hand for them in the car that don't need refrigerated?


    I appreciate the reminder that they are "kids who have celiac disease" and not "celiacs".  That's a good reminder to treat them as my wonderful kids they have always been first.

  11. I think this may just be a venting post.... I hope that's okay. 


    We are just a month into my daughter (4 1/2)  being diagnosed and are exploring further if my son (3) has it too (+ blood work, - biopsy).  I'm terrified of going anywhere or doing anything.  I worry that my kids are going to accidently get gluten somehow and I have become a recluse!  I just want my daughter to be able to heal and for my kids to be healthy.  How long will it take before she is feeling better and for me to know how sensitive she might be? 

    I'm overwhelmed with cooking for kids who are picky eaters and are now gluten free too.  I keep having people telling me how great it is that restaurants have gluten free menus now and even the pizza place in town makes a gluten free pizza, but I don't think I can trust that and I don't know how to get people to understand it when I don't exactly understand it myself yet! 


    I'm glad I've found this forum.  I hope I can quicly grasp how to live life as a celiac for the sake of my children.  I just want them to thrive and live life to the fullest!

  12. Is it possible that a young child could have issues with "leaky gut"?  Or is this something that happens after years of being undiagnosed?


    My 4 year old (and possibly my 3 year old) was just diagnosed and I'm trying to figure out how I would know if other foods are a problem.  Should I automatically put her on an "elimination diet"?


    Thank you!

  13. I'm just curious what everyone's experiences have been with their children.  I have read a lot of blogs & books from an adult's point of view, but am curious what other parents' experiences have been in having their child diagnosed and how the kids did after going gluten free. 


    My daughter's main issue was constipation and we were battling encopresis issues when I asked to have her tested for celiac.  She tested positive with flying colors on both the blood work and biopsy.  My son tested positive on the bloodwork, but negative on the biopsy, so we are still trying to figure that one out.  It's been a month since our daughter went gluten free and I haven't really noticed any changes in her.   I wonder if it just takes longer and I need to be more patient.


    How did your child do after going gluten free?