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Need Advice About Testing My Son, Feeling So Conflicted

megsybeth

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megsybeth Enthusiast
megsybeth
Posted

My son has had very small stature since two months, also weak teeth enamel, poor concentration, anemia. Motor delays. He has seen a couple GIs who are not celiac experts but did some blood testing. He had negative bloodwork at 18mo, 2.5 years and a few weeks ago at four. BUT he also started having more pronounced GI issues: distended belly, diarrhea, constipation. And I just tested positive on bloodwork.

My son was set to have a colonoscopy/endoscopy last week but I stupidly canceled. His GI had told me shes never seen a positive biopsy with negative blood work. This suggested to me that I dont want her doing the biopsy so I wanted to have a specialist do it. But of course he cant get into a specialist until the end of. Nov, and an endoscopy would probably be another month wait. So I just decided to take him off. gluten. This was a week ago.

Well the not so great GI has my son scheduled for an endoscopy/colonoscopy in two weeks. I was planning to cancel but Ive had a change of heart. He still has diarrhea. What if it's colitis or something? I know it could be dairy, lingering gluten issues, but I decided to pu t him back on gluten for the next two weeks. I hope Im doing the right thing. I cant change my mind again!

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mushroom Proficient
mushroom
Posted

I think you're doing the right thing, Mom, considering you yourself are celiac. The one week off gluten will probably not make a difference. You may get a positive or he may not yet have enough damage since he is young. Either way, I am sure you will give him a good 3-6 month gluten free trial after the EGD.

I am sure you know from what you have read on here that you should make sure that the doctor takes at least six biopsy samples to be sure of catching damaged areas. :)

GottaSki Mentor
GottaSki
Posted

This process is not easy.

Keep him on gluten until the endo is complete.

Ask how many samples of the small intestine your doctor plans to take and whether these samples will be taken regardless of visual signs of Celiac Disease.

Here's a great article that another member posted which explains what should be done. Read and bring a copy along to show the doctor if they are dismissive of the specific need of celiac samples.

Open Original Shared Link

Hang in there!

megsybeth Enthusiast
megsybeth
Posted
  • Author

Thanks. Mushroom :). I will tell her. Honestly I feel terrible about glutening my son but what reakky gets my goat is the money this mediocre GI will get from my insurance. But maybe I'm still a little crazy from my untreated celiac.

mushroom Proficient
mushroom
Posted

Thanks. Mushroom :). I will tell her. Honestly I feel terrible about glutening my son but what reakky gets my goat is the money this mediocre GI will get from my insurance. But maybe I'm still a little crazy from my untreated celiac.

Just maybe, she will see her first positive biopsy with negative blood, and she will become a better doc because of it :D and not just go around dismissing people. And I agree with Lisa, she has to take the samples regardless of what she "sees". :ph34r: since most celiac damage cannot be seen with the naked eye.

megsybeth Enthusiast
megsybeth
Posted
  • Author

Lisa, thanks for the article! And Mushroom, thanks for reminding me to stay positive. I need to remember that finding out at four would make my son really lucky compared to most of us.

GottaSki Mentor
GottaSki
Posted

Lisa, thanks for the article! And Mushroom, thanks for reminding me to stay positive. I need to remember that finding out at four would make my son really lucky compared to most of us.

You are welcome...but credit for the article goes to Mushroom too :)

She's right - stay positive :)

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