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mcarbone

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mcarbone Rookie
mcarbone
Posted

Im looking for other families or a support group who have children in Northwest Suburbs of Chicago. Anyone out there?

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MaryJones2 Enthusiast
MaryJones2
Posted

There is a R.O.C.K. (raising our celiac kids) chapter in Chicago. Here's the list:

https://www.celiac.com/articles/563/1/ROCK-...roup/Page1.html

kbdy Apprentice
kbdy
Posted
Im looking for other families or a support group who have children in Northwest Suburbs of Chicago. Anyone out there?

I'm in the far NW burbs & have not found anything close by. There used to be one in Rockford, but I'm pretty sure it's now defunct.

LMK if you find something, my dd would be so excited to find someone else that has celiac!

mcarbone Rookie
mcarbone
Posted
  • Author

Im in Hawthorn Woods, my daughter is 2 1/2. Maybe we could start one.

I'm in the far NW burbs & have not found anything close by. There used to be one in Rockford, but I'm pretty sure it's now defunct.

LMK if you find something, my dd would be so excited to find someone else that has celiac!

  • 2 months later...
kbdy Apprentice
kbdy
Posted
Im in Hawthorn Woods, my daughter is 2 1/2. Maybe we could start one.

I'd love to find something. I have no idea on how to start one, but would be willing to help!

mouse Enthusiast
mouse
Posted

last year a member here, posted that there was one in McHenry. The reason I noticed is that we used to live near Mchenry, before we retired to AZ. You might try looking on this website under McHenry. I am not good at that or I would search for you. Good Luck. You can also look for a Whole Foods as they many times know the Celiac groups in the area.

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    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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