Why Is The Biopsy Necessary?

[dandelionmom]

My 3 year old, Julia, had very positive blood work. She has classic symptoms. We're ready to go gluten-free.

The GI presents the biopsy like it is a given, an absolute. When I said I was uncomfortable with general anesthesia, he just discounted any argument and pretty much left the room, sending the nurse in to schedule the biopsy. So now I have this biopsy scheduled for 6 weeks from now, with the instructions to feed Julia as much gluten as I can until then. But he never told me WHY she needs this. When I asked what this will do for her all he said was, "no doctor will treat her for celiac disease without it." When I asked what treatment there is beyond diet he said, "Oh, just the diet."

So why do we need this? Can't we just go gluten free based on the blood work results?

I keep making up pros and cons lists, and honestly I can't think of any pros beyond "gold standard" whatever that means?!

Please excuse all my ramblings and please help me think of the pros to this test!

[Fiddle-Faddle]

You do not need a doctor's permission to try the gluten-free diet, and you do not need to let a doctor bully you into an invasive, risky procedure that is nothing more than a fishing expedition. You already know that gluten is the problem. The biopsy only lets the doctor confirm the amount of damage to the villi--IF he happens to biopsy a damaged area. Villi damage can be patchy, and damage is not always visible to the naked eye.

What is the doctor going to do if he happens to biopsy an undamaged area? Tell you to feed your child gluten in spite of the blood work?

The "gold standard" is in the process of changing. The gluten-free diet used to be much more difficult than it is now, and doctors felt that compliance in the absence of proof of damage was unlikely. That has totally changed.

There are many here who do believe that the biopsy is necessary, and I'm sure they will speak up right away. Obviously, I'm not one of them!

Honestly, I think you should either fire this doctor (yes, YOU can fire him!), or insist that you have the right to turn down the option of biopsy (it IS an option,no matter what he says) and begin the gluten-free diet. You can also contact your insurance company, explain the situation, and tell them that you think he is ordering unnecessary surgery at their expense.

Keep us posted, okay?

[taweavmo3]

Once there is a definitive diagnosis, there really isn't much left to treat (in our case anyway). After my daughter's diagnosis, we had a checkup 6 months later with one follow up blood test to see if we were sticking to the diet. After that, we had one more checkup that lasted all of about 1 minute, and now 2 years after diagnosis, our Pedi GI said we don't really need to come back unless there are more problems.

So, that's one of the reasons I haven't had a problem putting my other children on the diet w/out a firm diagnosis. After our own GI doc directed me to the internet and to Dana Korn books, I figured we were pretty much on our own anyway, lol.

[vanillazeis]

like you my 3 year old has very positive blood work and classic symptoms. my dr feels that i brought him a kid that was sick and we went looking for answers. the blood test came back positive so thats it, thats our answer. he said maybe a biopsy would be necessary if she didnt have symptoms and we accidentally came upon a positive celiac test, but unless i wanted a biopsy he was completely comfortable with this diagnosis. false positives are very rare, and a positive on this test cannot mean anything else. it means celiac. i say get a new dr that will listen to you, or insist you wont do it, im not ready to put my 3 year old through that. if she wants to later thats fine, but for now a positive blood test + her potbelly/vomiting= celiac... your the mommy you know best. dont let anybody push you around when it comes to your kid.

what's the harm in going gluten free now???

what's the harm in giving her as much gluten as you can for the next 6 weeks???

-breanna

[JennyC]

My son is three and he also had all the classic symptoms and very high tTG values, three times the normal value for his age! The blood tests were ordered by his pediatrician and when she gave the results over the phone she told me to go gluten free and make a GI appointment. My son's symptoms completely disappeared and he started gaining weight immediately. One month later when we made it to the pediatric gastro he would not "officially" diagnose him without a biopsy. He did not try to educate me, he spent the entire 20 minutes pushing me into a biopsy. I refused the gluten challenge. I refuse to literally put my son through hell to satisfy his curiosity. It was a hard decision for me. I did want the official diagnosis, but my son's pediatrician is great and she will order any of the tests needed to check his progress. In my opinion, positive blood work along with dietary response is proof of celiac disease. I understand that the diet is a life long commitment, but positive blood work is very accurate, and the dietary response confirms it.

[kbtoyssni]

While the biopsy is considered the gold standard in the medical world, I feel a bloodtest or dietary response is a perfectly valid diagnosis. There's several things to consider here:

-Do you need a biopsy to commit to putting her on a gluten-free diet? Some need that final bit of proof to fully commit.

-Would you still keep her gluten-free if the biopsy comes back negative? Biopsies are tricky since you have no guarantee that the doc will biopsy damaged areas and you have no guarantee that your very young daughter has been eating gluten for long enough for have a lot of damage (which is a good thing!)

-Are you willing to have a positive diagnosis on her medical records? Some say this makes it easier when she gets to school if you want to do a 504 plan (although I'm not up on the details of all this and even if you don't have a 504 you can still give gluten-free instructions to teachers). This also means that it might be harder to get health insurance later in life if she's not covered by an employer (although I think this is silly because a diagnosed celiac on a gluten-free diet is going to be much healthier than an undiagnosed celiac eating gluten but that's a whole different topic).

-If the doctor suspects something in addition to celiac, a biopsy might be recommended, although that doesn't sound like the case here.

A side note:

-Do you have a good GP? If you have one that won't give you the evil eye every time you mention she's diagnosed through blood test or diet then I think you're fine. I don't think you need to keep seeing a GI after diagnosis so your GP is most important here.

[NewGFMom]

Hi there,

I am going through the EXACT same thing at the moment, and here's what I did. (My son will be 4 in September.)

We had 3 positive blood tests and made an appointment to see the GI. I started the gluten-free diet on my son immediately. He's not 100% better, but I'm satisfied with his response to the diet. His energy levels are higher, his appetite is way up and he does not complain of nightly stomach aches. If I ask if his tummy hurts, he says yes. But he will not volunteer the info like he was before. Stuff in the bathroom is looking better as well.

Five weeks after we went gluten free, we got our appointment with the GI. The GI told us he would not diagnose or treat celiac without the biopsy. We said 'what's to treat? It's a diet that we're responsible for.' He said, if he had a celiac diagnosis, he'd test for all these other things. So, my husband tried to get the guy to give us a valid argument not to do these other tests. So, we ended up getting them.

He said we'd have to go to another GI because he would not treat us for celiac without the biopsy. So, I called my doctor (the family physician who ordered the original blood test) and told her that that GI was not going to work for us. I refuse to put him back on gluten. I've had 1 known glutening since we pulled it, and he was psychotic the next day. She said it wasn't her first choice, but she felt our course of action was reasonable. She was supportive and said she would do a referral to whomever we chose.

Then I called the assistant to the head of the celiac group at Children's Hospital in Boston and told her that we needed a different doctor and why. I said that we would probably do the biopsy some day, but not with a kid this young. I'd rather do it when he can be a willing participant, not a guinea pig.

She passed the message on to the head of the department and he said he'd work with us. I met another family who uses the new guy we're going to and they never biopsied either.

At this point, I am willing to do the biopsy to make sure that there is nothing else besides celiac causing his continued stomach problems. But I am not willing to put him back on gluten to do it.

So, stick to your guns. If your gut is telling you to try the diet and see what works, then don't let them bully you! Biopsies are the only way the docs make any $$ on celiac disease. So they are very motivated to do them. Call your pediatrician, tell him or her what your plan is and that you need a different GI.

I'll let you know how the next visit goes in September!

[Jenny G.]

My 4y.o. son was just diagnosed via blood test (tTG 128), but the doctor said we needed to confirm with biopsy. She said it was "absolutely necessary". I argued that I was willing to stick with the diet and then periodically check blood work to see if he was improving. But the doctor kept pressing and pressing for the endoscopy and biopsy. In the end we did it. And it was an AWFUL experience for my son (and for me). Of course the test was completely indicative of Celiac. Big surprise.

I'm upset that I didn't stick to my guns. The doc now wants me to have my daughter tested as well given the genetic component of celiac and due to her exhibiting similar symptoms to my son. If her blood work is positive there is no way I'll do the biopsy this time around, but I may have to switch to a different gastroenterologist. Anyway, my advice is to do what feels comfortable and don't let yourself be bullied like I was!

[Guest j_mommy]

I wanted a biopsy, but I'm 24. I would be leary of doing it to my child as well. Like a pervious poster said....your child can decide later if he wants to do a gluten challenge and a biopsy later. A positive blood test gets you a DX too. Adults can do biopsy awake but a child would be difficult to do that with.

[melmak5]

I am 26 and I was given the option by my first GI to either take the blood work as diagnosis or do another endoscopy (the first one was done months prior because they thought I had something wrong with my esophagus and they didn't do a biopsy then).

I chose not to start eating gluten again and do an endoscopy. For me, I had lost too much time at work and literally could not afford to be out sick any longer.

You may want to get a second opinion and see what another GI thinks. I just saw a new GI who has insisted that I eat gluten for 6-8 weeks and then have an endoscopy/biopsy. My case is a bit more complicated and I understand her rational, she wants to make sure that there isn't something else going on with my guts, but right now I cannot handle any more of the big D so I said the big "NO."

All the best navigating through this!

[megirae]

When I went to my PA she had the blood work done and it came back positive. She then referred me to a GI but between the doctors appointment and the GI I got pregnant! So I never had the test but I know that gluten is what makes me so miserable. When my son is old enough I will have the blood work done but I don't think that we will do the biopsy. He can make that decision when he gets older. Besides, if they do the biopsy what does that change? Either way you have to go gluten-free right? Do what makes you most comfortable. Only you know what is best for your child.

[Nic]

Having the biopsy or not having the biopsy is a personal decision. My son was 4 when he was diagnosed and we did have the biopsy done and it was not a terrible experience for him. There was no discomfort involved. The colonoscopy was a different story which was not done on the same day. He had a lot of gas pain afterwards.

Nicole

[cruelshoes]

A difinitive diagnosis of celiac disease generally consists of 3 things - positive bloodwork, positive endoscopy, positive results on the gluten-free diet. All 3 elements can have some margin of error or ambiguity with them. But viewed as a whole, they result in a medically documentable condition.

We had a biopsy done on my son when he was 6. It was no big deal at all. It was harder on me than it was on him. I am SO glad we did it, for so many reasons. There can be no doubt whatsoever in anyone's mind that he has celiac disease. I had color photographs of the damage to his intestines to show to my in-laws who did not want to believe the diagnosis. I had a documented medical condition with which to request a 504 plan from his school. When he gets to be a teenager and starts to think old mom might not be so smart, it won't just be me telling him he really does have it. I have it in black and white. And a diagnosis makes it REAL. I don't know of any other way to put it. Once it has a name, it is a real thing, and I don't have any choice but to deal with it.

I would do it again in a heartbeat, because I believe what one gains from it far outweighs the short-term discomfort. I know other people have chosen differently for their kids, and I'm glad that's what works for them, but I'm also glad we made the choice we did.

[Fiddle-Faddle]

I would do it again in a heartbeat, because I believe what one gains from it far outweighs the short-term discomfort.

If it were only a matter of short-term discomfort, I would agree with you, but knocking a child out IS risky, and the procedure IS invasive (though not to the extent of, say, open-heart surgery), which carries other risks.

And the chance of false positive is ridiculously high. If they don't pick an affected error, then what? Is it not really celiac?

I have not yet heard from anyone what else a doctor would be looking for or would find in an endoscopy other than damaged villi. Has anyone else? What other tests do they run on the biopsy besides celiac?

[cruelshoes]

If it were only a matter of short-term discomfort, I would agree with you, but knocking a child out IS risky, and the procedure IS invasive (though not to the extent of, say, open-heart surgery), which carries other risks.

And the chance of false positive is ridiculously high. If they don't pick an affected error, then what? Is it not really celiac?

I have not yet heard from anyone what else a doctor would be looking for or would find in an endoscopy other than damaged villi. Has anyone else? What other tests do they run on the biopsy besides celiac?

I agree with your points. There is an inherent risk to any medical procedure that required anesthesia. For our child in our situation we accepted that risk. Not everyone's situation will be the same, and someone else could make a different choice for the child under their care.

There is the chance of a false negative, to be sure. Many celiac experts reccommend that 10 samples be taken to try to minimize that possibility. Our son's GI took 8 samples from different areas.

I believe that the GI doctor undertakes the endoscopy to look for information of any kind, not just proof of damaged villi. Findings could be evidence of GERD or ulcers, for example. In our son's endoscopy, he was shown to have 6 polyps in his stomach and duodenum. These were removed and biopsied to check for cancer. They were benign, and the MD said that polyps such as these can result from the constant irritation of the GI tract from gluten. So in our situation, damaged villi was not the only finding.

[PattiD2]

My 13 year old DD had an endoscopy in April to check for eosinophilic esophagitis, which is a cell mediated allergic reaction that can cause swelling in the throat or digestive tract. She had a positive diagnosis in the esophagis but undetermined in the duodenum. After 6 weeks of steroids and an elimination diet, her throat was getting better but she continued to have moderate to severe stomach pain. At this point, her ANA spiked indicating an autoimmune response and her ttG came back positive. Her Peds GI reviewed the biopsies that were taken and said that there was damage consistent with celiac but not as severe as she would expect given the level of pain. gluten-free diet did not seem to help until 6-8 weeks and was not a complete cure but definitely improved her baseline quality of life and level of pain. I am thankful that her pediatrician, GI , rheumotology, opthomologist and gynecologist kept looking when things weren't getting better.

She is scheduled for a endoscopy/colonoscopy next Monday. Celiac and eosinophilic disorders can cause sketchy damage and be easily missed. They will look for both issues throughout and see if either/both diseases are getting better.

[Fiddle-Faddle]

My 13 year old DD had an endoscopy in April to check for eosinophilic esophagitis, which is a cell mediated allergic reaction that can cause swelling in the throat or digestive tract. She had a positive diagnosis in the esophagis but undetermined in the duodenum. After 6 weeks of steroids and an elimination diet, her throat was getting better but she continued to have moderate to severe stomach pain. At this point, her ANA spiked indicating an autoimmune response and her ttG came back positive. Her Peds GI reviewed the biopsies that were taken and said that there was damage consistent with celiac but not as severe as she would expect given the level of pain. gluten-free diet did not seem to help until 6-8 weeks and was not a complete cure but definitely improved her baseline quality of life and level of pain. I am thankful that her pediatrician, GI , rheumotology, opthomologist and gynecologist kept looking when things weren't getting better.

She is scheduled for a endoscopy/colonoscopy next Monday. Celiac and eosinophilic disorders can cause sketchy damage and be easily missed. They will look for both issues throughout and see if either/both diseases are getting better.

Is she still on the gluten-free diet? Because that will practically guarantee a negative biopsy. I've read here that 3-4 months of lots of gluten is necessary for a gluten challenge.

Either way, I hope things continue to improve for her.

[Fiddle-Faddle]

In our son's endoscopy, he was shown to have 6 polyps in his stomach and duodenum. These were removed and biopsied to check for cancer. They were benign, and the MD said that polyps such as these can result from the constant irritation of the GI tract from gluten. So in our situation, damaged villi was not the only finding.

Good example--thanks for posting this.