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Cause For Celebration!

Rebecca's mom

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Rebecca's mom Rookie
Rebecca's mom
Posted

Hi all,

I don't usually "start" posts, but I just had to share this with people who would understand. Our youngest daughter was diagnosed 1 year ago with Celiac Disease. Her tTG number was >100, as was her anti-gliadin number. She had Borderline Stage IV damage to her intestines. She had NO symptoms - none. The only reason that her celiac disease was "caught" is that she has the most awesome pediatrician.

You see, Rebecca has Down syndrome. Her pediatrician has a step-daughter who also has Down syndrome, and her mother had recently been diagnosed with celiac disease. After their daughter started to have the same symptoms, they had her tested, and she also had celiac disease. Since her dad wanted to know if he needed to do anything different for a child with DS who has celiac disease, he started researching it, and discovered that people with DS have a 1-in-8 chance of developing celiac disease in their lifetime.

Because this pediatrician has a special place in his heart for kids with Down syndrome, he has about 30-40 kids with DS in his practice. He took it upon himself to screen each of them when they came in for their well-child checkup. That is how we found out that Rebecca has Celiac Disease.

Well, we had another blood test run a couple of weeks ago at Rebecca's latest well-child checkup, and I am thrilled to report that her tTG number has gone down to 6!!!!!!!!!! We thank God each and every day that this wonderful pediatrician literally saved our little girl's life. She is doing so well, and we know that a gluten-free diet has a LOT to do with that.

Anyway, I just wanted to share our happy news with all of you. I appreciate you taking the time to listen -

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jerseyangel Proficient
jerseyangel
Posted

Oh Teresa, what a great story!! I'm so happy that Rebecca is healing and that her Celiac Disease was caught. What an amazing doctor. :D

Thanks for sharing!

Rebecca's mom Rookie
Rebecca's mom
Posted
  • Author

Thanks so much! Yes, "Dr. Frank" is a pretty special guy. Thanks to his decision to test his DS patients, not only have we been able to educate a lot of families in our local Down syndrome group, we have been able to "catch" a lot of children who aren't in our doctor's practice who might not have been tested otherwise. We have also had several parents (mostly moms) who have read about the symptoms, gone in for testing, and discovered that THEY have Celiac Disease!

I keep telling everyone who will listen that "A kid with Down syndrome saved my life", because as a direct result of Rebecca's diagnosis, I started on a GFD. I tested negative for celiac disease, but I had a rash that had been hanging on for 3 years - it cleared up almost immediately. It turns out that I had DH all this time - it didn't ever itch, so my dermatologist never thought to test it! I recently found out that I am the parent who passed along the Celiac gene to our daughter.....

In the past year, I have lost almost 40 pounds without even trying. I have been fighting my weight for most of my adult life, and for the first time, I KNOW that I am going to lose most, if not all, of it, and keep it off for good. If it hadn't been for our daughter coming into our lives 8 years ago, none of this would have happened. We have been so incredibly blessed!

Jestgar Rising Star
Jestgar
Posted

What a great story. It feels good to know that there are good things in the world, too. Thank you for sharing that.

ang1e0251 Contributor
ang1e0251
Posted

Thank you for sharing your insperational story! My husband works with mentally handicapped some of whom have Down's. Because of my diet he knows exactly what to do for them. It's such good knowledge to have that your child had no symptoms and still was positive for celiac disease. It justifies the testing for family members. I get no response when I tell my family to be tested. Maybe her story will move them.

RollingAlong Explorer
RollingAlong
Posted

What a wonderful story. I wonder if each of our doctors knows how many celiacs are in their practices - and statistically, how many they should have.

happygirl Collaborator
happygirl
Posted

This may be one of my absolute favorite posts that I have ever read on this board. I'm happy you took the time to "start" the thread and share your wonderful story. Your daughter is lucky to have you as her mom.

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Gfresh404 Enthusiast
Gfresh404
Posted

That's awesome! I love to hear stories about good doctors since you always hear so many stories about how awful doctors are.

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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