Why insist on a biopsy?

jacflash · Joined: 17 Feb 2009 Posts: 18 Location: Massachusetts USA

I am new to the world of Celiacdom and the whole online culture of the community. Please forgive me if this is a silly or offensive question; it is meant sincerely.

In light of the very high accuracy of the tTG test, and in light of studies showing that a tTG over 30 is 100% indicative of celiac disease except under clearly-understood circumstances, why do people still insist on a biopsy? In 3-4 days of scanning online forums I've repeatedly seen biopsies referred to as "The Gold Standard" and even a couple of folks who refer to themselves as "Gold Star Celiac", like it's a status symbol. Why?

Now, if I were the executive director of The National Association for the Financial Enrichment of Gastroenterologists, I'd love this sort of mindset-establishing branding. But as someone who has probably had undiagnosed celiac disease for decades, who got a 59 on the tTG, who is probably facing a 'scope in a few weeks, and who is -- and this is the real reason I ask -- REALLY reluctant to inflict scopes on his 9-yr-old and 6-yr-old sons who probably also have it, what's the point? What useful, relevant info does the biopsy consistently deliver that a high-positive tTG plus several months on the diet wouldn't? Why should I do this to my kids?

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

This may be of use to you. FYI - the TtG is not 100% predictive of celiac. False positives do occur.

So Why Do Celiacs Still Need Biopsy? By William Dickey, Ph.D., M.D., F.A.C.G.

jacflash · Joined: 17 Feb 2009 Posts: 18 Location: Massachusetts USA

Yep, that's certainly the American College of Gastroenterologists' position.

And yet...

Coeliac disease: a biopsy is not always necessary for diagnosis.

aklap · Joined: 02 Oct 2004 Posts: 10602 Location: WI, USA

What about those that are Sero-negative? I believe there's about 20% that test negative on blood work and positive on biopsy.

Ultimately the choice is yours. It's not up to us or anyone else to convince you to do one thing or the other. All we can do is offer up the facts as we know them to be and let the individual decide what's best for them.

Trust me - being in No man's land is not always easy...so the more you can get nailed down, the better.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

jacflash · Joined: 17 Feb 2009 Posts: 18 Location: Massachusetts USA

The study doesn't say tTG alone works for everyone. It says that roughly half of positive results score high enough that, in the absence of information to the contrary, a conclusive diagnosis can be made without biopsy.

aklap · Joined: 02 Oct 2004 Posts: 10602 Location: WI, USA

So...how do you know it's going to work for you? Smile

It also depends on the docs...some will give a dx of CD based on blood work, symptoms,family history and improvement on GF diet. Some won't give a dx unless you've got villi damage. Some won't run all the blood work. Some won't consider CD unless you present with "Classic" sx's.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

Research in the field of diagnosis is always evolving. But as of this moment, the bloodwork and biopsy are what we have. Do it, or don't do it, it's your choice. But if you decide against it and go GF based on the bloodwork, you may be losing out on your only opportunity to have what is considered a gold standard diagnosis at this time in history. You also have nothing as a baseline to compare your improvement to. Will your villi be better in 2 years? Without the biopsy now, there is no way to know.

I had a scope done on my then 6-year-old son, and I'd do it again in a New York minute if it meant getting the gold standard, unequivocal diagnosis.
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-Colleen

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ostrich · Joined: 30 Mar 2006 Posts: 4960 Location: Nebraska

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

The thing about biopsy and diagnosis (even moreso with children) is that you have to look well into the future when making the decision. Other people will disagree with me, but I feel so strongly that a diagnosis is crucial to ensure compliance to a GF diet. Say you take your children off of gluten now based on the bloodwork alone. What happens when they get to be teenagers and enter the celiac honeymoon period? They will have very little incentive to remain GF if puberty makes symptoms go away. By getting the gold standard biopsy now, if possible, it takes the wind out of the sails when kids want to have the argument that because the biopsy was skipped, they don't have a clear cut diagnosis.

They are your kids, you can definitely do what you want with them. But there is a lot to be gained by having the biopsy done. From 504 plans to incentive to stay compliant to elimination of future doubts about the diagnosis. I could spend an hour listing reasons to have the biopsy done. I can't think of very many reasons NOT to do it, in fact.

I can't remember - have you had the bloodwork done on your kids yet? This whole conversation may be moot if their bloodwork is negative. IMO, it would be better to focus on cementing your own diagnosis, and then cross the bridge of getting the kids tested when you come to it. Don't let symptoms or perceived symptoms be your guide in deciding whether or not to have the bloodwork done on your kids. When we had our kids tested, I was just sure my daughter would be positive and my son negative, but it was the other way around. He had no symptoms, and his bloodwork and biopsy was nearly identical to mine.
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-Colleen

Where are we going, and what am I doing in this handcart?

jacflash · Joined: 17 Feb 2009 Posts: 18 Location: Massachusetts USA

aklap · Joined: 02 Oct 2004 Posts: 10602 Location: WI, USA

As with any surgical procedure [life in general] there are risks. The question becomes, do the risks outweigh the benefits. There have been many good points brought up here - points that need to be seriously considered and weighed.

The good news is that EGD's are done with a high amount of frequency. I'd venture to guess gastro's do those procedures daily - probably several of them Wink

Certainly one question to ask your gastro is "how many of these have you done?". They generally go over all risks with you before doing the procedure.

You are doing the right thing by researching and exploring all of your options.

Here's some past discussions you might look thru:
Suspect CD, is dx worth it?
Compelling reason to dx by biopsy Biopsy or Not to Bipsy - That is the question.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Home-Based-Mom · Joined: 12 Aug 2008 Posts: 328 Location: California

I don't have an official diagnosis and probably never will have. I figured out what was causing my grief, so to speak, and when I learned that I would have to resume making myself sick and miserable for months before I even had a chance of a diagnosis I decided it wasn't worth it.

You and your kids are not in that situation. You still have a chance for a confirmed diagnosis.

I have done tons of reading and see both positives and negatives to having a confirmed diagnoses.

Colleen pretty much covered the pluses. You most likely will need a 504 plan for each kid and may not be able to get them without the diagnoses. The need for the plan may very well extend all the way into life in a college dorm. Others have fought tooth and nail with school districts and who knows what you may encounter in the future.

Also from what I've read, the apprehension leading up the the procedure is far worse than the procedure itself, because you sleep through it. Doctors and nurses are very good at calming the nerves of scared children.

The only negative I can think of is that once there is a confirmed diagnosis in the medical record the patient may not be able to get their own individual insurance policy. If your kids end up working for a large employer that offers group health coverage that is not an issue. If they work for a small employer that does not offer health insurance, or if they become self employed, then it could become an issue. BUT maybe by then insurers will have realized that a diagnosed celiac is far less costly than one who is still spending decades and dollars seeking help.

They are your kids and it's your choice, but it may be better to have the diagnosis and not really need it than to need it at some point in time in the future and not be able to get it.

Keep thinking on this - you will come to the decision that is best for you and your kids.
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Kathie · Joined: 27 Jan 2006 Posts: 1018 Location: Florida

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

I don't know how it is in all children's hospitals, but when my son had his endoscopy, they gave him nitrous oxide to put him to sleep before doing his IV. He didn't even have to feel the stick. He doesn't remember anything about the procedure at all.

It's a big decision to have a biopsy done on a child. Good luck with whatever you decide to do.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

jeant · Joined: 06 Apr 2008 Posts: 273

Weighing the pros and cons before any type of medical procedure is always a good thing, and there is some excellent advice in this thread. I just want to add that kids are very resilient. When faced with medical tests, many really are troopers and handle it better than their parents. So definitely collect all the opinions you can, including second and even third opinions from doctors. It's difficult to have to make a decision for your kids. But should you decide it's necessary for them, I bet your kids will be able to handle it.