Celiac Disease Support Group
Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...
My daughter was diagnosed with Celiac this past December. A few weeks ago we had her follow-up appointment with her Gastro doctor. He wants to do a repeat endoscopy to make sure everything has healed. She has only been on the diet a few months.
I really don't want to put her through that again unless I have to, she has anxiety issues. I asked the doctor if he could tell if she was better by a blood test and he said that would give him an idea, but the endoscopy would be more accurate. Well, I called to check the results of her blood test last week and he didn't test her levels!! I don't understand why. Maybe he thought we were 100% decided on doing the endoscopy.
I'd like a little advice. Has anyone done the repeat endoscopy or opted out and just had the blood test done? If we're following a gluten-free diet, what more can we do? Her symptoms have cleared up but can she have other issues that a repeat endo. would pick up on? Ultimately, we want to do what is best for our daughter and are not sure what that is right now.
I really don't want to put her through that again unless I have to, she has anxiety issues. I asked the doctor if he could tell if she was better by a blood test and he said that would give him an idea, but the endoscopy would be more accurate. Well, I called to check the results of her blood test last week and he didn't test her levels!! I don't understand why. Maybe he thought we were 100% decided on doing the endoscopy.
I'd like a little advice. Has anyone done the repeat endoscopy or opted out and just had the blood test done? If we're following a gluten-free diet, what more can we do? Her symptoms have cleared up but can she have other issues that a repeat endo. would pick up on? Ultimately, we want to do what is best for our daughter and are not sure what that is right now.
I wouldn't do it. I'd tell the doc you want to hold off until you have any issues and would like to check her blood levels. Many docs diagnose straight from blood levels + symptoms. I had an endoscopy only because everything (even the gene tests, blood tests, etc) was negative. Endoscopy was positive. If all your daughter has is celiac, i don't see a reason to ever get another biopsy. Every surgical procedure has risks. What would be the benefits with either result of the biopsy? I can't think of anything worthwhile. I stopped eating gluten for about 6 months when the doc decided to do a biopsy just to be sure. I thought OH NO, and ate a bunch of gluten for 3 weeks which probably didn't do much. They did find the 'beginnings' of celiac and said I definitely had it. When i told them how long I'd been off & back on it, they said that it was probably getting better & still healing, and not just starting as they initially thought just from looking at the biopsy.
If you are doing a GF diet, then I would not put the kid back under. When my oldest seemed to be having issues, we took her in and had a blood test done, which showed she had been G-poisoned.
Frankly we can tell between her saying her tummy hurts, the smell of her pooh, and the way she acts.
IMO I would not do it.
BTW - my 1 year will be going under soon, to verify blood and genetic test. she is looking very positive. the biopsy will confirm.