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Celiac Disease Segment On "moms On The Move"


TriticusToxicum

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TriticusToxicum Explorer

I was flipping through the channels tonight (Wednesday) and I heard the magic word "gluten". I stopped to see what I was missing, and it was a whole segment on Celiac Disease on this show I've never heard of "Moms on the Move" on PAX... sort of a feel good moms save the world show. They interview a woman who saw 22 doctors before being diagnosed. Check it out Open Original Shared Link.

It was a pretty good segment.


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mouse Enthusiast

Thank you for sharing this Richard. It was a good article. I read it, instead of listening - he he.

jaten Enthusiast

Nice!

Good Housekeeping did an article a few months back. I think it featured Alice Bast as well.

Thank you for sharing!

TriticusToxicum Explorer

Here's a link to the featured guests' website. It mentions that celiac disease will get a mention in BOTH Fortune and Money magazines!

Open Original Shared Link

Fortune and Money magazines to feature celiac disease

"This is a tremendous opportunity to raise awareness for celiac disease! Time Warner has approached NFCA asking us to work on a joint project for celiac disease for two of their publications, FORTUNE and MONEY magazines.

From time to time, FORTUNE and MONEY include special information features on a specific topic. We are pleased and proud to say that their special sections for the November 13th issue of FORTUNE and the December issue of MONEY will be about celiac disease.

Quite naturally, they have asked us for some direction in securing sponsors for advertisements and supporting text. It is unlikely that the Time Warner sales contacts will know about celiac disease or understand why this section is so important. Our goal is to steer these Time Warner sales folks to the right department or to someone will advocate that an ad be placed in this Special Section.

NFCA is reaching out to the celiac community for any help you can give us by forwarding this information to potential corporate sponsors and/or offering to make introductions. The one-page description of the benefits of advertising in this Special Section of FORTUNE and MONEY shown below gives more information about the program. "

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    • Samanthaeileen1
      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
      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
      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
      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. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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