Biopsy Results Are In.....

[Sierra's Mommy]

Hello:

For those of you who are familiar with our story (newly diagnosed by blood test 6 yr. old), I wanted to post an update. The Dr. called with the results of the biopsy and it was confirmed that Sierra does have Celiac. While we are relieved to have some answers and begin the road back to full health (she is still pretty sick--especially since Mom let her have ice cream last night at a birthday party), we are also experiencing the myriad of emotions you all went through--sadness, anger confusion, etc.

However, as mentioned, we are now focusing on healing her--and of course, getting the rest of us tested. Our case probably set the record for fastest diagnosis. It was less than two weeks ago when I brought Sierra in to her ped for diarrhea and gassiness. I asked about Celiac, based upon my own web searches about her symptoms. Of course, the ped's reply was, "Oh, I don't think so. We normally catch that in toddlerhood." I pushed for a blood test, and she agreed. The blood test came back positive. We then scheduled an appointment with the Ped GI. For seven weeks out. I pushed it to four weeks out, and then when I saw how sick she was--unable to even go to school, due to diarrhea and fatigue, I demanded an earlier consult. I grabbed a cancellation appointment and got in that very afternoon. The Ped GI said, "Oh, I don't think this is Celiac. It usually doesn't suddenly start with watery diarrhea." She ordered a biopsy anyway, and I demanded again that it be done sooner, rather than later. It was set for the next day. After the biopsy, the GI said, "Things looked good. However, I won't say for certain that she doesn't have Celiac until I hear back about the biopsy". Three days later, we have received the confirmed diagnosis.

I share this story as an example to other parents, who are intimidated by Dr.'s and the whole topic. Arm yourself with knowledge and trust your instincts! We are our children's best advocates. No one else has a better knowledge of their symptoms, their distress--or cares more about their future, than us.

I look forward to being an active member of these boards, and I look forward to learning from all of the wisdom available to me through other's postings. Thanks in advance for your continued support!

Proud-to-be....Sierra's Mommy

[lizard00]

I am so happy to hear that you have your confirmation now and you can start getting your little girl healthy. (It's always strange saying that...)

Unfortunately, your story is too common, but it just goes to show that as parents, we do know our children better and when we know something is wrong, it pays to keep pushing. Thank you for sharing your story, and I do hope you stick around. This site is a great source of information!!

[Tallforagirl]

  Sierra said:

I share this story as an example to other parents, who are intimidated by Dr.'s and the whole topic. Arm yourself with knowledge and trust your instincts! We are our children's best advocates. No one else has a better knowledge of their symptoms, their distress--or cares more about their future, than us.

Good for you for pushing the issue, and I'm glad it resulted in you getting a diagnosis.

How bizzare, to say celiac disease does not start with diarrhea, or if the child is not a toddler then it can't be celiac disease!! Hopefully those doctors who dismissed your suspicions have learned a lesson seeing their dismissiveness was proved to be unfounded.

Hope Sierra feels better very soon.

[Lisa]

You're a super mom, with great instincts. Excellent work!

[happygirl]

  Momma Goose said:

You're a super mom, with great instincts. Excellent work!

I agree 100%.

I am always amazed by mother's instincts....good for you for being your child's advocate!!

Let us know what we can do to make the transition easier. I'm looking forward to having you on the board!

Some good info: Open Original Shared Link

[caek-is-a-lie]

You're a good mom and I bet it's a huge relief to know for sure that it's Celiac. I remember when my niece was so sick--starving to death--and they didn't know what it was. they'd fight all the time...amongst themselves, with the doctors... They were so terrified for her but once they found it it was Celiac for sure, everything got so much better for my family. I hope things get better for your family too. Celiac is certainly not the end of the world when you get the diet down pat. It's always such a relief knowing what it is...then you can take control and do something about it.