What symptoms were you or your child having before being diagnosed?
Ever since Sarah was a toddler she had a big belly and would usually have a lot of problems going to the bathroom. I asked about her belly at her two year old appointment and was told it was just a toddler belly and she would grow out of it. My husband was the one that was really concerned. Than one day when she was three, she was standing in her pajamas and she looked 9 months pregnant, that's how big her belly would get most the time, and my husband said you need to call tomorrow that's not normal.
She also was having a hard time going to the bathroom...she would hold it in and kept going a little in her pants....it was awful!! I thought I was the worst potty trainer ever! So we took her in the next week and got a new doctor and she asked how long her belly had been distended and I told her for over a year but they had said she would grow out on it. She ran all the test and it came back that she had a marker for celiac. We went to one GI and he did her endoscopy and said she had damage, but only a little so he didn't want to give her that diagnosis for life.... Yet his paperwork said she had celiac.
So needless to say we got a scones opinion and her new GI is amazing!! She said that it said on the former GI's paper that she had it. She reran her levels just to be sure and sure enough she was diagnosed with celiac. I was so happy I have an answer to all her issues at least. My little girl is awesome about it. She always looks do he gf or gluten free sign on her food :)
Any other family members diagnosed with celiac disease?
Not yet but she has three younger brothers. One was tested at two and came back negative...but I am going to test the two oldest boys again.
How has your life or your child's life changed since being diagnosed?
It's a tough road and a constant learning experience. I know at some point she will be on her own more having to make her own food decisions so I'm trying to give her the knowledge I can. I also eat gluten free, as well as my dad because we think we have a gluten intolerance. My blood work came back negative for celiac but since going gluten free I feel a lot better. It is nice that here is so much out there that is gluten free now!
Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?
This is a tough one because I even feel like some old school GI doctors only look for the "normal" symptoms. Like my daughter was growing fine but yet she still had celiac. I think having more media coverage of the actually disease and not just the dad diet part of it. I think when shows cover it hey have to be careful what they say and get their facts right! And bloggers do a great job of getting the word out, that's who I turned to when my daughter first for diagnosed :)
Thank you Mom for sharing Sarah's story. This goes to show that doctors STILL NEED to be educated on celiac disease. Unfortunately, there are so many cases like this. A "little damage" is enough proof...it may just mean you caught it before it got to "severe damage". Sarah, I'm so happy you are feeling better! You and Jack would get along just fine - he loves climbing trees too!
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