Good News - Happy Ending

[Benshell]

6 months ago my daughter was diagnosed with celiac based on blood tests. She didn't really have a lot of the "typical" symptoms...she had only gained 1 lb in 9 months and was having tummy aches frequently, so her endocrinologist had included a celiac panel with her normal thyroid bloodwork (she was born without a thyroid and been on synthroid since birth). After the gastro dr gave us the news, we were shocked as she had been growing and thriving with no stomach distress and well, some of the terrible stories I've heard of on this site (I'm amazed at the stregnth you parents show when dealing with these things). We even re-ran the blood work to make sure and her IGA was at about 167 and she was testing positive.

Now my husband and myself decided AGAINST the endoscopy/biopsy, despite the dr's request. However the dr did say, while its the "gold standard", he doubted he wouldn't find damage and the outcome would be the gluten free diet anyway. So we decided to skip the procedure and go gluten-free full on. I have to tell you that I was extremely deligent with research and we had NO slip ups in 6 months. There was one when I was bed-ridden with surgery and my husband prepared her lunch and by accident forgot to put tin foil down in the toaster oven when toasting her bread. My daughter got a rash for about 4 days, extreme moodiness, plus it threw her thryoid levels off because the medicine wasn't getting absorbed properly. Trust be, that was incentive enough for me to recover fast!!!

For the good news...after 6 months of being Gluten Free, she is now testing NEGATIVE, her IGA is at 1. Her thyoid medicine has been cut down by about 25% because more of the med is being absorbed since she's healed up. The gastro dr was AMAZED at her results as he expects to see the #'s go down, but not back to completely NORMAL in 6 months . Plus, he talked to my daughter directly (not just me) and told her how proud he was of her for sticking to the gluten-free diet, asked her about her favorite gluten-free foods, was there anything about the diet she didn't like, etc... He is such a positive dr (Dr. Berizen out of Westchester Medical if anyone is interested).

I just wanted to relate this story for all of you struggling and wondering if there is a light at the end of the tunnel. FOr any parents who wonder weather to have an endoscopy or not (please remember I think my daughter's case was a very simple case). Just please stay positive, give the gluten-free diet your best (yes its overwhelming in the beginning, but now its so easy). Restaurants have been so accommodating to us and LOVE seeing my daughter. Yes, celiac can be hard, but its almost become some what of a blessing...we're all eating healthier and its forced by 6 year old to learn a lot more about her body and eating than most other kids (how many 6 year olds read the ingredients on boxes!!!).

Stay positive, feel free to contact me with questions.

Michele in NY

[TrillumHunter]

This is a great story! Thanks for sharing with everyone.

[mommida]

That is great news!

I just wish everyone could hear the positives of the gluten free diet at the same time as the diagnoses.

We do have some awful stories here, but it's what makes this a bonding place! Celiac strangers on the internet can understand the situation better than our spouses, parents, siblings, in-laws, "friends" (like you need to search further for an enemy), or just strangers you happen to meet on any given day.

[macocha]

thanks for sharing - wonderful!