Going Gluten-FreeSeptember 22, 2010

Is Biopsy Really Necessary?

The intestinal biopsy is typically the last step in definitively diagnosing celiac disease. Positive blood test results usually prompt the biopsy. A team of researchers from Argentina says, however, that for many patients, a combination of certain blood tests are so accurate they may eliminate the need for the biopsy.

In the study, the team examined how well the celiac blood tests perform, individually and in combination, in over 600 adults. They found that using a combination of two blood tests--the widely used anti-tissue transglutaminase (tTG) and the new deamidated gliadin peptide (DGP) test--it was possible to reach or rule out a celiac diagnosis without the biopsy in 92 percent of study subjects. (Click here for more about DGP testing and important issues surrounding celiac testing.)

What does this news mean to you and me?

Had I been part of that research, I think I would have been among the 92 percent. I knew I had celiac disease before undergoing my biopsy. I had the classic symptoms and my blood tests were “off the charts.” So it came as no surprise when the doctor called me a few days later with the biopsy results: celiac disease. For me, the biopsy felt like a formality. And with the medical costs and risks involved with the biopsy procedure, was it really necessary?

Celiac experts say yes, the biopsy is still necessary. A key reason is to be absolutely certain of the diagnosis. Celiac disease requires a strict, lifelong adherence to the gluten-free diet. Such a rigorous lifestyle change shouldn’t be entered into lightly, they maintain.

As a celiac, I appreciate how serious a celiac diagnosis is--few things have had such a big impact on my life--but it would be exciting if additional research led to blood tests one day taking the place of the biopsy, at least in some cases.

Note: The American College of Gastroenterology advises anyone concerned that they may have celiac disease not restrict their diet (follow a gluten-free diet) before seeking medical evaluation, because this may cause false negative test results.

Comments (10)

You can now be tested for genetic markers for coeliac disease - a simple blood test (that takes quite a few weeks for the results though.) If you are negative for the genes then it is highly unlikely you have coeliac and there is no need for a biopsy. If you are positive then you can have the biopsy knowing you have a genetic pre-disposition to the disease.

Posted by: emerald | September 30, 2010 7:02 AM    Report this comment

I also did not have the biopsy. I was so very, very ill--severely anemic, hypothyroid, hair falling out, sleeping half days, aching joints, mouth sores--and when I was told about celiac by a nutritionist, I tried a 'test' of ten days. The difference going gluten-free made in me, as well as my mother, who it turned out was very, very ill, convinced myself and all who knew us both. Also, during my search for health, I experienced a number of ill-informed and plain bad doctors. I did find one doctor who had celiac himself, but even he failed to direct me correctly. I was still malnutritioned, but he never directed me toward a good gi doctor, nor any help other than: "Don't eat gluten, come back in six months." The only really good, knowledgeable doctor I went to was a rheumatologist-immunologist, who diagnosed my Sjogren's, and who knew a whole lot about celiac.

I believe that doctors want you the have the biopsy for many reasons. If you can be assured of having a good doctor who knows his stuff, I think a biopsy could be helpful at the very outset--but no way am I ever going to go back and eat gluten to get it. Too dangerous! But sad to say, these doctors are in the minority. For the rest, money and procedure rule. Doctors must follow the guidelines they are given, or risk insurance not paying and being sued. The problem is not so much our doctors as the system.

It can be an inconvenient diet, but it certainly is not rigorous.

Posted by: Curtiss M | September 26, 2010 1:29 PM    Report this comment

About 7 years ago I had diarrhea for 3 months straight. I asked my doctor (now my ex-doctor) if it could be a gluten problem, and he said that it was highly unlikely. Then he told me to take Immodium. I decided to try a gluten free diet, just to see if it made any difference, and my symptoms went away immediately! No diarrhea, no gas, and my mouth sores went away. I changed doctors, but by then I had been gluten free for 3 years. So when she did a blood test for celiac, it was negative. My new doctor didn't know you had to be eating gluten for the test. But there was NO WAY I was going to eat gluten and get sick to be tested, when in the end, I still wouldn't be able to eat gluten no matter what. Both of my grown kids can't eat gluten. Well, one does, and he suffers from severely itchy legs and doesn't feel well after eating gluten. And his celiac test came back negative. The other one can't eat gluten at all without diarrhea, gas and vomiting. She has not been tested, but I know she won't eat gluten for the test.

Posted by: Lisa M | September 25, 2010 12:51 AM    Report this comment

Of course "celiac experts" say that; do you know how much money they are already making off this?? To call a gf diet "rigorous" is absolutely ridiculous. A rigorous lifestyle change would be something like having to run 20 miles a day in order to stay alive, not buying a different all purpose flour for your baking. Cheese and crackers, people (gf/cf of course, haha), have some perspective. This fear-mongering in our culture needs to stop, imo. If you feel better not eating gluten (or dairy, or soy, or whatever!), then don't eat it. I don't see how paying someone to tell you not to eat it makes it more official that you feel better and are healthier.

~Kelli, gf for two years twelve years ago, told I was just trying to be extreme so I acquiesced to eating "normally" again, followed by years of infertility and countless illnesses. GF again for the last four years and never felt better. No longer considered extreme, since gf has gone mainstream. Glad it did though. . .many people are feeling better, and there are a lot more dietary options than there were a decade ago.

Posted by: Kelli | September 24, 2010 1:33 PM    Report this comment

Never had the biopsy. I am or may have celiac. I have been mostly off of gluten for 11ish years. I would NOT put gluten back in my diet for any amount of money. And taking a test to just be able to say I have celiac or I am "just" gluten intolerant is pretty lame. The ONLY thing that "cures" staves off either is NO gluten. Maybe just maybe not all doc's are this way but the only valid reason I can come up with to have the test is for a doc to get paid. As there is no money in medicine for it. Anger that is unstoppable, eyeballs that seemingly would feel better if they just popped, floaters in the eyes, skin I could scratch til I rip it off, stomach aches, congestion... so I should have a test so they could tell me I shouldn't ever eat gluten again? I think NOT.

Posted by: DE'DEE B | September 23, 2010 6:47 PM    Report this comment

No need for biopsy for me either....I have DH and I was off gluten for months when the Dr. talked me into getting a biopsy (would have been of the skin for DH). The Dr. was skeptical that I had DH. Went back on gluten to get the biopsy. The Dr canceled on the day of the appt. I was so sick that I said forget it, I don't need a biopsy to prove I have celiac. I still have to put up with the skeptical Dr. but I feel to great to care, healthier than I've been in a long time.

Posted by: Annie B | September 23, 2010 6:27 PM    Report this comment

It's definitely important to have the biopsy done because first they can see how bad your villi is and second I think it's important to be able to see if there is anything else to worry about. My doctor discovered that I also had h.pylori bacteria,which you need antibiotics to get rid of,without the biopsy I wouldn't have known.There is also a higher risk of stomach cancer which they check for and also to compare with another biopsy in the future to see if your getting better,because some people do not get better with a gluten free diet alone.

Posted by: unknown | September 23, 2010 3:10 PM    Report this comment

Do the blood tests require you to be eating gluten? You couldn't pay me enough to get me to eat a slice of bread. I have chronic fatigue syndrome, and the most important thing I can do for energy is avoid gluten. I discovered the specific carbohydrate diet a few months ago, and have achieved a whole new level of (relative) health by following their guidelines; in a nutshell I avoid all grains and starches, all non-fruit sugars, most beans, and lactose. I'm intrigued that this works so well for me, because I've read recently that lots of celiac people get very little relief from a GF diet, but do much better when they avoid all grains.

Posted by: Madie | September 23, 2010 10:15 AM    Report this comment

I haven't come across many/any celiacs in my situation. I was completely asymptomatic. At the age of 37 my infertility endocrinologist was the one who found that my bloodwork indicated a gluten intolerance. Had it not been for him testing me for every possible reason why I couldn't get pregnant (mind you i had already had a child with no problems 4 years earlier) I never would have known. Based on my bloodwork (he said it was off the charts too) he told me to 1. get to a gastro immediately and 2. cut out all gluten even sooner. By the time I got to the gastro (1 month later) he told me that in order to find out if i REALLY had celiac would be to do a biopsy and to go back on gluten (he told me to make sure i had gluten every day). So I enjoyed my last few weeks of pasta and beer and breads and had the biopsy confirming that I have celiac. I have gone gluten free and feel no different. Other than putting on a few pounds which I definitely did NOT need to do there is no difference. Even if I mistakenly eat something containing gluten, I continue to be asymptomatic. Oh and I still couldn't get pregnant.

Posted by: Meg C | September 23, 2010 9:28 AM    Report this comment

For me, a biopsy isn't necessary -- nor was it done. I was diagnosed with celiac disease after tests for a new osteoporosis medication determined that I was deficient in Vitamin D, despite taking supplements. Although I was referred to a gastroenterologist (after a 9-week wait for a new-patient appointment), I had also been told to Google celiac disease and elminate gluten from my diet. I did . . . and I did not then see warnings to get a biopsy first. I've since been seen by four gastroenterologists -- the first one said I couldn't have celiac disease because it is very rare and only occurs in children! The second referred me to a third for a biopsy, but the third was unwilling because, one, we'd seen my health improve after six months on a gluten-free diet and seen that I got very sick when I unknowingly ate something with gluten, and because putting gluten back in my diet would violate the Hippocratic Oath ("first, do no harm"). The fourth also agreed. Meanwhile, I see one doctor who is not convinced without the biopsy but all the others (primary care, rheumatologist, ENT, etc.) consider the evidence for celiac disease overwhelming. I wish I'd had the biopsy, just to silence the critics, but the second GE nailed it: I'm not going to put gluten back in my diet even with a "normal" biopsy because I feel better without it. Sure, it's a tough diet to follow . . . but I'm healthier than I've ever been.

Posted by: Carole | September 23, 2010 9:03 AM    Report this comment

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