Need For Biopsy?
Posted 02 June 2004 - 02:28 PM
Posted 02 June 2004 - 06:35 PM
Posted 02 June 2004 - 07:51 PM
Posted 03 June 2004 - 03:05 AM
Posted 03 June 2004 - 01:13 PM
Posted 03 June 2004 - 05:36 PM
I was just recently diagnosed, through a biopsy. I live in Asia (Cambodia) and the biopsy was done at a first-rate hospital in Thailand. I had been having gastro problems since 1998, and finally the last year it just got so much worse that my GP in Thailand decided I should have a biopsy - not having any idea that I might be celiac. Most doctors in Asia, though, are not so familiar with celiac, as it mainly affects those of European descent. Just in case, though, I decided to go on the gluten-free diet, after the results came and they said it "might" be celiac. Lo and behold, ALL of the symptoms I'd been having on and off for 8 years disappeared within about 3 weeks!
Just to be sure, though, I brought the biopsy slides with me here to the US when I came to visit family a few weeks ago. I saw a doctor here, and he said that biopsy is the MAIN way they test here, that blood tests can be inconclusive (false negative or false positive). He sent my biopsy slides to the lab, and sure enough, 100% positive for celiac. So I haven't even bothered to have the blood test.
The biopsy wasn't pleasant, but it wasn't the end of the world, either. Unless it's a religious matter, or she's very, very young, I would say better to try it. But that's just my opinion. I'm still learning all I can about my new diagnosis!
Posted 03 June 2004 - 06:10 PM
Posted 04 June 2004 - 04:42 PM
Thanks for all the input. I am so new to all this. I have realized the doctor only had antigliadin test results in hand. I know a "panel" was done. Now I will contact her original doctor and get the complete test results. So I know if the other tests were negative/positive or not done at all. Since I had to call and suggest the tests be done, it is hard to tell. I had logged her diet and saw extreme flare-ups in diarrhea when she ate pasta, noodles. Then realized when the problem began, she was eating whole-wheat cereal every morning. I found the wheat connection. I fear too soon -- as in the biopsy may not show the damage they are searching for.
My daughter will be 3 in September; so she is young and would be sedated for the biopsy. Everyone has said it isn't bad, but there are risks. Thanks again. I will post next week when I know more.
I can't imagine how hard it would be to go through this before the internet and easily being able to communicate with great people like yourselves, all over the world.
Posted 07 July 2004 - 11:19 PM
Posted 08 July 2004 - 05:48 PM
Our 3 1/2 year old daughter just had an endoscopy done 3 weeks ago. I was hesitant at first and came here to ask questions and got a lot of good advice and questions I could ask such as:
Could she have some numbing cream for where the IV would go?(they used some, I just had to make sure to remind them)
Could I be in the room during the procedure?(we were allowed and it was interesting to see inside her stomach and see samples taken on TV screens)
Could I hold her in recovery?(I got to get right on her bed as soon as they were done and hold her)
Yes, it was very hard in the beginning of the procedure. But I was glad to hear the results a week later so I knew how much damage had been done. The doctor said her villi were as flat as pancakes.
Posted 07 August 2004 - 05:20 AM
Hey, we can eat like normal people! (I hoped) We had Friday night spaghetti again (I'm a runner - it's nearly a ritual). Then we had Saturday afternoon loose stools. We ate pancakes Sunday morning - Sunday evening - messy, messy! So, we decided to avoid those foods (maybe she eats too much of them too fast, does chew enough, something) but not all gluten since the doctor said it is not her problem. Well, that worked pretty well for a week if constipation is a comparably good thing. Now for the past 5 days, loose stools, not diarrhea in the sense of more frequent but very loose. I have not allowed her to have juice all week - the doctor thought I just give her too much juice.
I am so frustrated. I had come to terms with the idea of gluten-free; we almost skipped the biopsy and tried gluten-free anyway, But no, we went with the medical "wisdom" -- he is a pediatric GI at the children's hospital. I thought, "he knows more than I do". In a long phone discussion, he convinced me that the don't have stool tests-they aren't accurate, lots of people have anti-gliadin antibody in their blodd as she did without Celiac, (she did not have Ttg antibody) that going gluten-free might be sentencing my daughter to a tough diet needlessly, that we might miss something else that they would find in the biopsy. Now, over a $1000 out of pocket, not to mention what it costs insurance, a tough decision for us to have the biopsy, and we are right back where we were.
I see the connection in her diet. I am glad to see we are not alone, I found other posts of people with negative biopsies, but diagnosed or self-diagnosed, Celiacs. We are going on vacation in 2 days, coming home Gluten-Free.
Posted 07 August 2004 - 07:08 AM
Guest_~wAvE WeT sAnD~_*
Posted 07 August 2004 - 07:21 AM
I just wanted to say that a false negative doesn't mean all hope is lost. I realize my GI was pretty reasonable, but of course, some doctors have told the patients with which I've interacted her that a negative endoscopy is inconclusive.
If your daughter has the antibodies, she's got celiac disease. Getting a second opinion is a good decision on your part, but I can understand why you would be apprehensive when it comes to sedating a young child.
Before I was diagnosed ADD, my pediatrician (sp? I'm tired right now) gave me an EGG (a test that monitors brain wave activity during sleep). Whoever was trying to perform the test kept telling me to close my eyes. Being four years old at the time, I didn't understand why. "Why is she telling me to close my eyes?" I thought. "I'm not tired."
Afterward, this same pediatrician ordered an MRI. My parents kept me up all night long and made me watch countless Sesame Street videos and Mary Poppins. I still didn't become tired, so when I went to the hospital, I was drugged, probably with a sedative similar to the one I was given for my endoscopy. I was awake until after the procedure was done, then I slept for hours and wet my pants in the car.
What I'm saying here is that I'm not sure drugging growing, young bodies is a healthy idea. Did you say your daughter had a stool test already? Because that seems a lot safer for her.
By the same token, the endoscopy was safe for whomever has the 3 1/2 year old. So I can't say it would be right or wrong to go either route, but I'm definitely skeptical about the effects of sedatives on young children.
I hope you and your daughter stay happy and healthy, and that you make the right decision for the two of you, whatever that may be.
Just my two cents!!!
Posted 07 August 2004 - 09:10 AM
Posted 22 August 2004 - 07:40 AM
It took only a few days for her stools to become firm and stay that way.
Her sleep patterns have improved from waking 2-3 times a night and having trouble getting back to sleep. By midweek, she was waking once a night and returning to sleep easily. The past two nights, she has slept through the night. I can't say when that has happened two nights in a row - not in the past year!
I am hoping for improvement in some behavioral issues. I think her moodiness and screaming episodes are lessening but the change isn't as obvious as the stool and sleep improvement.
Meanwhile the bills for the endoscopy/biopsy are starting to roll in - what a waste of money that turned out to be!
She is doing so much better. I am keeping a food diary to see if any other foods give her trouble.
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