Do We Really Need Biopsies to Diagnose Celiac Disease?

12 years ago I had low bone density. Endocrinologist did one test. tTg. Normal was 1-19 mine was 181. Proved part of why my bone density was not good at age 50. I tried to eat well but gluten was in tiny amounts in many places. I didn't know I was celiac, but never ate sandwich or pizza instinctively. I refused the "gold standard" biopsy. I don't see a need for invasive tests when I can change behavior. I am gluten-free. I don't eat gluten-free junk either. I am much better. Still work as I was undiagnosed for so long and am allergic to other things due to leaky gut. I am healthier than most. Wonder if the 25% earlier death is for celiacs that comply. Thanks for your article. I sensed I was wise but people often ask about biopsy. I am now 62.

I was diagnosed on blood tests alone at age 51, 6 years ago. All of my markers were off the charts high. I had been having unusual blood work for years - high platelets, elevated liver enzymes, thyroid issues, etc. The blood work was so definitive, even after 2 weeks of no gluten, that by the time I saw the gastroenterologist a month later, he did not want to reintroduce gluten and made the diagnosis on blood work - I had the full celiac panel, all markers were high.

I was just diagnosed with celiac with the blood test - my numbers were extremely high and the doctor gave me the option to do the biopsy. He said with as high as my numbers were it wasn't really necessary if I didn't want it. I have chosen not to get the biopsy done. rnrn

I am surprised to hear two people in the comments say they were "diagnosed" using a genetic test. Genetic tests for celiac disease can, in some cases, exclude a diagnosis of celiac disease, but they cannot diagnose it. One third of the population have the genetic markers for celiac disease. Only a small percentage of those will develop celiac disease. Genetic testing must be followed up by other tests. I am concerned that people are being told that testing positive for the genetic markers for celiac disease is a "diagnosis". While I think that, in some cases, a strongly positive result on celiac disease blood tests can eliminate the need for biopsy to confirm, I think that when celiac disease is suspected and tests are negative or unclear, a biopsy should always be performed. I also think there is value in knowing how badly damaged the gut is and in seeing how much healing has been done in a follow-up biopsy at a later date.

I was finally diagnosed in 2015. A Gastroenterologist did not do a biopsy while doing my endoscopy in 2008.  Celiac could’ve been detected 7 years before it was. A Prometheus blood test, a biopsy, and a camera capsule test were all positive for Celiac. Thankfully, the new Gastroenterologist that ordered the correct tests listened to me, and ordered all of the right tests.

Its been a difficult journey !! 

I was recently diagnosed with celiac. When my blood tests came they were so high I was certain I had it. My dr commented that it was “highly likely” based on my blood levels.
 

Of course they told me to keep eating gluten till I had my endoscope Oct 5 2023.
I wondered why do I need an endoscope when my blood tests were so high. Interesting to me that the latest research shows I didn’t.

Anyway I pushed the endoscope forward from the original October 24 th date since I didn't want to eat what for me was now poison.

When I came out from anesthesia my gi dr leaned over me and said it was positive for celiac. He didn’t need to wait for pathology results. Said no more gluten but I could go to waffle House for one last Waffle. I quipped at him there went his Christmas pound cake. Lol.

I never did make it to Waffle House but I hear that IHOP has a great gluten free waffle. Now on my list to try one soon. 
 

Now I am on a seek and destroy aka toss out anything that has or night be contaminated with gluten. Onward and upward!! 

Hi, Maggieinsc! Do you know if iHop's gluten free waffles are mixed with the same equipment, cooked on the same surfaces and handled with the same utensils as their gluten counterparts?

I hear IHOP puts pancake batter into their scrambled eggs...I avoid any place that would do something like that!

43 minutes ago, trents said:

Hi, Maggieinsc! Do you know if iHop's gluten free waffles are mixed with the same equipment, cooked on the same surfaces and handled with the same utensils as their gluten counterparts?

Haven't been yet. Just heard they have them but I will ask when I go. 

19 minutes ago, Scott Adams said:

I hear IHOP puts pancake batter into their scrambled eggs...I avoid any place that would do something like that!

Hmm I will ask when we go amout cross contamination .  I can promise u that. I think I read abt it on the Facebook Celiac page. People on that page do not eat in restaurants that are not careful when they prepare gluten-free foods. 

Thanks, please let us know what you find out! 

3 hours ago, Scott Adams said:

Thanks, please let us know what you find out! 

I will!!