Need For Biopsy?

[CarolynM]

With positive antibody results and of course, symptoms, what is the need for biopsy? My husband is very reluctant to allow a biopsy on our daughter. I do not know enough to explain this to him, and he was unable to come to the doctor appointment. Thanks

Carolyn

[flagbabyds]

The only reason i can think of is if you want to help out in the research for the new pill you need to be biopsy diagnosed. i guess if you want a complete answer you could do it, but sometimes there are false negatives and then you will still be sick. my sister had a negative biopsy but out herself on the diet anyway and feels so much better. the best test for celiac is the dietary and if you feel better on the diet then you have it if you still feel sick after like 3 years then you probably don't but still the diet is easier on everyones stomach, bread is hard to digest, so that's about all i have to say

[MySuicidalTurtle]

Well, my doctor said there was no need to the biopsy since the blood work on me said celiacs and the diet works. So, if she is going on the diet and better I too don't see the need for the procedure. If she isn't better then I would get it done.

Kristina

[CarolynM]

Thank you both for your replies. The doctor says it is the way to diagnose Celiacs. Could the presence of antigliadin mean anything else? I mean "normal" people do not have an antibody to wheat, right? Doesn't that mean she is gluten-intolerant? Anyone else have ideas?

[kalo]

If it were my child I probably wouldn't want to do the biopsy either. Although someone here said there kids had it and it was no big deal. With the stool test from enterolabs I wouldn't even think of a biopsy. The stool test supposedly eleminates the need for biopsy. You could check them out. Hugs, Carol B

[KarenR]

Hi there,

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!

Good luck,

Karen

[dana-g]

After I was diagnosed, our kids, ages nine and 11 were blood-tested. Their tests indicated biopsies were in order. I was not thrilled, but we had them done at a very reputable children's hospital (CHOC in Orange Co., CA) under sedation and they were FINE...they got Gatorade in the recovery room and that was all they cared about! But, my nine-year-old had a headache from the anesthesia for a good 48 hours, although gratefully he ended up not having celiac disease. My daughter does have it. My concern with biopsies is that you can get a false negative if they don't take tissue from the damaged areas. The doctor said my son's intestine looked normal, while my daughter's was "glistening", i.e. had flattened villi. He could tell just by looking at their intestines that my boy didn't have it and my daughter did. It's really important to have a doctor who is very experienced with celiac disease. My own first doctor only had a couple of celiac disease patients, which made me think he was underdiagnosing the disease, so I switched to somebody who specializes in celiac disease. (I actually ran down the list of docs from my insurance company and called them, asking if they saw a lot of celiac disease patients, until I found one who did.) If your bloodwork is overwhelmingly positive, you have to ask yourself what difference it would make to you to A: confirm it with a biopsy or B:possibly get a false negative. You could still always try the "poor man's test" and go gluten-free for six months and see if your symptoms subside. That would be the best confirmation of all. The diet is a pain in the neck at first, but what have you got to lose? There is plenty of support waiting for you right here!

[CarolynM]

Me Again!

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.

[CarolynM]

Not sure that anyone will see this post now, but here goes! We went through with the biopsy. It went well, a bit trying when she was coming out of anesthesia. We are now waiting for diagnosis, biopsy results. The doctor doesn't think it is Celiacs. I think it is gluten intolerance of some degree. I really hope something is found with the biopsy, Celiacs, parasites, something! (yes, she was checked for parasites by stool test previously) Again thanks for being here!

[karen149]

Hi,

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.

[CarolynM]

Update for everyone! We got our results a few weeks ago and the biopsy was negative! I should have felt relief or joy but I didn't. He found nothing - so normal, he didn't even want to see her for a follow-up. I hoped he was right; she had been doing better - of course, we had cut way back on gluten-containing foods. I thought maybe whatever it was had resolved itself.

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.

[flagbabyds]

Well, if she feels better on the gluten-free diet and has high blood tests then she almost for sure has it, the diet improvement is a test in it self! Put her back on the diet and if she feels better keep her on the diet, if she doesn't then go back to the doctor for more testing.

[Guest ~wAvE WeT sAnD~]

Hey all!

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!!!

Take care,

[kalo]

Hi Carolyn. Sorry about what you are going through. Please go to enterolabs.com and read his theory on negative blood work and biospys. His stool test is very non invasive and would be worth a try. better yet is if the gluten-free diet does the trick you have your answers. I have learned NEVER to take a doctors word for anything. Have a great vacation.

[CarolynM]

Update on my daughter - we are one week gluten-free!

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.