To Biopsy or Not to Biopsy? A Celiac Question
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I’m a rule follower. I check off lists, I color inside the lines, and balance my checkbook to the penny.
I’m also not a doctor, a nutritionist, or a nurse. Therefore, there are certain doctors whose word is law to me. Therefore, I trust when they require a biopsy for an accurate Celiac Disease diagnosis.
Up until this date, an intestinal biopsy is the “gold standard” in diagnosis. With my family history, my gastroenterologist didn’t even bother with a blood test. Instead, he immediately scheduled me for biopsy to see the extent of the damage. (Which may not have been the best idea, based on this info from the University of Chicago Celiac Disease Center.) Fast forward almost 20 years. I moved to Flint and chose to find a new gastroenterologist. He’s doing another endoscopy, and I’m okay with that. (Update- My villi returned to normal.)
I once belonged to an online group for those with Celiac Disease. The reasons people in that group chose to eat gluten-free run the gambit. Their methods of “diagnosis” vary as well. Some diagnosed themselves without a doctor. Other received their diagnosis after only by blood test, and some with blood test and biopsy. Others still suffer from Non-Celiac Gluten Sensitivity. (Keep in mind, to date, there is no test for NCGS. However research on zonulin is promising.) Opinions in that group vary widely. Some people are woefully uneducated.
I’ve been a staunch “all must get a biopsy” supporter since I was diagnosed over a decade ago. However, after listening to some stories, I softened my stance a bit. Some don’t have insurance or wrongly told to go on a gluten-free diet first. Others were pregnant at the time, and some simply don’t feel it’s necessary. I simply wish people to gain an accurate diagnosis. In addition, I want people to follow their diet accordingly.
ESPGHAN Biopsy Guidelines
If you’re going to forego a biopsy, you need to make sure that you’re doing so under proper guidelines. The new NASPGHAN Clinical Guide for Pediatric Care guidelines enlightened me. However keep in mind these guidelines are ONLY for children. In a Michigan study, only children with TTG antibody levels greater than 300 fit the criteria for diagnosis, without biopsy. In that study , only ten of 174 patients would have been diagnosed simply by serology alone. (An abnormal TTG level starts at between 10-15.) Since that Michigan study, NASPGHAN completed their own research and suggested a TTG level over 100 is sufficient to diagnose without a biopsy. Dr. Fasano, who was once a big supporter of this, has started to question if this is the best way to go. Other intestinal issues may be missed without a biopsy.
A day without biopsy may be coming soon. However, there are a few things that will never change. DO NOT diagnose yourself. Do not let “Google” become your doctor! I’ve heard stories of people misdiagnosing themselves and instead discovering they have intestinal cancer. DO NOT stop eating gluten prior to diagnosis. While one can get the genetic test to rule it out while eating gluten-free, you MUST be eating gluten for blood and biopsy tests to come back accurately. If your doctor tells you to stop eating gluten before the test, FIND A DIFFERENT DOCTOR. Also make sure they can read read the biopsy and blood test results accurately. Your health is too important to trust to someone who is ignorant.
If you’re not getting a biopsy due to fear, please know that it’s not that bad. I encountered worse pain at the dentist’s office. There is no “prep” with an endoscopy. If you doctor refuses to do it, FIND A DIFFERENT DOCTOR! If your insurance doesn’t cover it, I can only apologize. The ridiculousness of our health insurance system makes me want to punch someone in the throat sometimes.
It all comes down to this. Celiac Disease is a serious disease. Like Erica Dermer from Celiac and the Beast explains, there’s a huge difference between an intolerance and an autoimmune disease. It’s not a fad, it’s not a diet you can cheat on. (Sadly, statistics show those who do not undergo biopsy more often cheat on their gluten-free diet.) If you can’t undergo a biopsy, live your life as one diagnosed with a serious disease. Don’t pick croutons off a salad. Don’t eat pie filling and leave the crust. If we don’t take our disease (and our need to follow a strict gluten-free diet) seriously, no one else will either.
What’s your story? Did your diagnosis involve a biopsy? If not, what were your TTG levels? How do you feel about the ESPGHAN guidelines?
I agree biopsy is important, but I also doubt if the trouble of going through a gluten challenge is worth the risk if the patient has already stopped eating gluten after a positive blood test. Yes, patients should be advised to continue eating gluten and get a biopsy, but I can say personally this doesn’t always happen.
Medical staff may mistakenly tell a patient to stop eating gluten prior to a biopsy, which is what happened in my young daughter’s case. Since then, we have observed a strict gluten free diet. TTG levels returned to normal, her anemia resolved, she gained weight and height, her belly returned to a normal size, and she’s much happier with her gut.
The couple times she has accidentally ingested gluten, it has been hours of vomiting followed by diarrhea. Nobody in their right mind would go through a month of that to do a confirmative biopsy.
The serum Celiac tests available are very accurate and have very few false positives, especially when coupled with a symptomatic patient. I also asked if there are ever false negatives for biopsy, and our GI doc said absolutely. When I asked what the recommendation would be if my daughter’s biopsy came back negative for celiac, but she continued to have symptoms, he said it would be a strict gluten free diet. So, positive or negative biopsy result, the recommendation and prescribed diet was the same after a positive blood test.
My doctor diagnosed me with celiac with blood work where ONLY Amy deamidated gluaden IgA was high, not TTG or any other markers. He told me to stop gluten immediately. It wasn’t until after that, I researched and found I need a biopsy. (He did and endoscopy a year ago and didn’t do a biopsy. ) I want an official true diagnosis. I’m willing to do gluten challenge because my symptoms aren’t terrible and are just random not all the time. (I get gas and bloating and stomach noises-all occasionally but not every day or every time I eat gluten. So I’m willing to do it. He won’t do a biopsy because it’s “not necessary “.
I am looking for a new gastrointestinal doc!
Hope you can find a doctor who can treat you better!
I was diagnosised via blood test only. I had initially been diagnosised with Hashimotos Hypothyrodism. After a few years of up and down on my medication my doctor decided to test me for Celiac. I have been living a gluten free life since my diagnosis. I take it very serious and have had some people close to me make comments that amaze me ..like you won’t die if you eat it.
I was diagnosed on blood test only. The biopsy seemed unnecessary since I responded so well to the diet. My sister was also diagnosed without a biopsy so we feel pretty sure we have it without a biopsy. My son tested negative twice on blood test but responded to the diet. He doesn’t care and calls himself celiac and adheres to GF. He would have to suffer eating gluten to have flat villi for what reason? My sisters daughter had biopsy only which did not show flat villi so she refuses to accept a blood test because she doesn’t want celiac disease that would limit her social life. She is constantly sick and calls it IBS. There is a real mix of opinion out there.
My Dr ordered a gluten test on me six weeks ago and my antibodies were off the chart high for gluten sensitivity. He tells his staff to tell me to go on a gluten free diet. That’s it. When I asked more questions he brushed me off with “it’s complicated and confusing. I sadly listened to him out of fear and his avoiding discussion and got off gluten six weeks ago. The results 3 days after eliminating gluten were amazing, my energy rebounded, stomach pain and inflammation gone, joint and back pain gone. I haven’t reacted to any other foods. But I went to a gastroenterologist a few days ago and he wants to do a biopsy which requires me to add gluten back. (Yes I hate my regular Dr now!). I had my first bite of wheat bread this morning. Tonight I have pain in my abdomen that’s a nasty reminder of how bad it was before I eliminated gluten! I have to do this for a month for an accurate biopsy? Not sure I can or want to!! This is crazy and cruel and I’m not seeing how I can handle this pain and knowing god knows what is happening to my gut!
I am SO osrry that your primary doctor didn’ send you to a gastroentereologist immediately. I feel bad for those who are wrongly told to start a gluten free diet prior to being tested. Having a biopsy no only allows for accurate testing, but also allows the gastro to check for any other intestional damage, such as from a hiatal hernia, etc. Prayers that this montb will go by quickly.
Yesterday morning was my first little bite of bread a little bigger than a postage stamp and at bedtime I’m hit with cramping the likes I’ve never known. No idea what to take, didn’t have any ginger tea I read helps and thinking no way I can do this for a month???!!! Then I took Pepto bismal out of sheer agony not caring what happened but it did help calm the cramping and I slept some. My gastroenterologist is putting me on dicyclomine I suspect out of concern I’ll back out of this month long ingestion of gluten for the biopsy and she’s right to think that! No idea how I’ll tolerate the dicyclomine but what choice do I have if I want a clear diagnosis and discovery of other possible issues? Out today to stock up on ginger tea hoping it’s helpful enough that I won’t need the Rx everytime.