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Going To See Biopsy Surgeon
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6 posts in this topic

I am new here...my 23 month old son has recently been diagnosed with borderline celiac disease through blood work. Joseph is giong to the surgeon Friday to set up a time to have his biopsy of his small intestine done. I am scared and my head is spinning :unsure: I have no idea where to turn with all this and I am on information overload.

My family and my husband's family are NO help...they think that we are crazy trying to find a cause to our son's chronic diarrhea. After 23 months I knew something was not right and I curse myself for waiting so long to find out what the cause was. I feel so guilty for poisoning my son's system with gluten.

I am hoping to find support and answers here, we are just at a loss and only have eachother to talk to. We just really need questions for the surgeon and lots of prayers that things go well.

Thanks, hope I find the support I desperately want here...

Tina

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Hi Tina,

We do the best we can for our kids and I know you feel bad about not knowing what was making your son sick but it's not your fault so don't beat yourself up over it. Now that you know he will get better! And isn't it good to know that a diet change not medicine will make him better.

Take care,

Lisa :)

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Ask the dooctor how many samples he will take. Two or three is not enough. Ten or more is good.

Does he believe you have to have flattnened villi to have celiac? Experts in celiac now believe that even mildly damaged villi should be considered celiac, not just gluten intolerance.

richard

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First, don't feel guilty. You can't bc you will make yourself crazy...and then confirm your family's thoughts! And we wouldn't want them to be right, right?!

That said, you go and you get your answers. My son was diagnosed in June at 2 1/2 years old, and he was down to 23 lbs.

The endoscopy is no big deal, and in fact your son will not even remember it. The worst part is the anesthesia/IV...but after that it's smooth sailing. My son even woke up and wanted McDonald's and then proceeded to run me ragged for the rest of the day instead of "laying low" as I'd hoped he would!

Definitely make sure the doc takes multiple samples from different spots in the intestine...one area may not be affected at all, while others are. This is a tricky disease!

Bridget

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Hey Tina, I hope you are getting the answers you are looking for, you will be in my thoughts and prayers. talk to you soon!!! Your friend, Stacy!

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First, don't feel guilty. You can't bc you will make yourself crazy...and then confirm your family's thoughts! And we wouldn't want them to be right, right?!

That said, you go and you get your answers. My son was diagnosed in June at 2 1/2 years old, and he was down to 23 lbs.

The endoscopy is no big deal, and in fact your son will not even remember it. The worst part is the anesthesia/IV...but after that it's smooth sailing. My son even woke up and wanted McDonald's and then proceeded to run me ragged for the rest of the day instead of "laying low" as I'd hoped he would!

Definitely make sure the doc takes multiple samples from different spots in the intestine...one area may not be affected at all, while others are. This is a tricky disease!

Bridget

Thank you all. I will make sure to ask the surgeon to take from several places in the intestine. First I will ask what his intensions are before I tell him what to do..I know alot less than him since I do not have MD behind my name.

My Joseph weighs about 24 pounds...he eats everything in sight and does not gain an ounce. People just used to tell me it was okay because he was so active, but I am finding out that is not the case. The little guy would eat me out of house and home! He has a really bad diaper last night, now he has really bad diaper rash...just want to move on the next step and get rid of the diarrhea. But for now it is gluten, gluten, gluten to make sure that biopsy gives us the proper report.

Thanks again, I will try not to beat myself up too much, I just feel like I failed my son by not trying to get an answer sooner.

Tina

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    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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