Performing an intestinal biopsy is still considered the “gold standard” for diagnosing celiac disease, meaning that one usually does not get an official diagnosis of celiac disease unless they have a tube put down their throats and bits of their intestines removed and analyzed. Actually, I didn’t think the endoscopy was that bad. It was painless — I was drugged of course, and in my foggy state I got to see inside my own intestines on the monitor! How cool is that?
But watching your child get prodded and poked is another story. I never had to make that decision since my kids have been gluten-free since the womb. I talk to many mothers whose children have had blood test after blood test as doctors try to figure out what is wrong. I feel for the mothers and fathers who don’t want another invasive procedure performed on their child, not to mention those who may not have adequate medical insurance to cover it. There are some who opt to not have the biopsy, who say “the blood test is good enough for me” and adopt a gluten-free diet. Unfortunately because they don’t get a diagnosis of “celiac disease”, they are considered just gluten intolerant and left out of any statistics that might help raise awareness.
Well, perhaps a positive blood test is good enough. According to a new study out of the UK, the immunoglobulin-A tissue transglutaminase (tTG) antibody test is 100% positive for predicting celiac disease at a certain level. In their research, all people who had a very high tTG blood antibody level (10 times the upper limit of normal) tested positive on the biopsy. What does this mean? That a biopsy is not always necessary!
The conclusion of the researchers was this: “…diagnostic guidelines could be modified so that small bowel biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels. This will avoid an invasive procedure and lead to a more rapid diagnosis and earlier treatment for over half of the new patients with coeliac disease.”
I hope that doctors are up on the latest research — it could save people from unnecessary medical procedures and parents from having to make such a difficult decision.
karen says
That is great news! Do you know how to calculate the 10 times above normal number? ie. If normal is under 10 does it mean a score of 100 or higher would be definitive? As always, thanks for your timely and helpful posts!
Cheryl says
Your conclusion that biopsy is unnecessary is wrong. My daughter had a high tissue transglutaminase level and a negative biopsy. She then had genetic testing and a capsule endoscopy one year later which still say no celiac disease dispite an abnormal TTG. She continues to eat wheat but we will follow her by symptoms.
alison says
Cheryl,
I am so curious as to why your daughter would have a high TTG! I would love to know how she progresses over the next few years.
My conclusion was based on the conclusion of the researchers in the study.
dan says
I just scored a 44 for the second time in a month on transglute test and am new to all this. Test was an accident. I am/was a super sporty fit 40 year old guy who in the last 180 days became totally ridden with super high rh arthritis score of 904 on a 0-20 scale. Can barely walk anymore and is moving into every joint in last 90 days. Got a blood clot in my brain 90 days ago and almost died. Specialists are baffled and sent me for a million tests as I take 5 different drugs. I have 6 different specialists including hemotologists, neurologists, radiologists, rheumatoid, etc trying to keep me alive and cure me. One lab accidently did a celiac test that was not requested and the score came back 44 last week. Specialists are not convinced these events are related to celiac, but they agree I have mystery auto immune disorder from “something.” I am on this board because i am thinking the accidental celiac test was fate suggesting a cause and thus possible cure. The good news is I am Canadian and all this is free of charge for me. Got to love high taxes and good health care. PS my wife is pregnant with our first and that is free too.
alison says
Wow, Dan, what a story! I would believe that celiac can lead to many, if not all, of the physical problems you are having. It can be such a system-wide disease. I hope you feel better after being gluten-free. Please keep me posted on your progress and congrats on the baby to come!
Alison
Amy says
Hi. My son’s tTG “score” was a 100. The doc said that he was pretty positive that he would have Celiac, but, did a biopsy to confirm. Turns out, no Celiac! All tests came back clean and pics of his intestines were healthy. Any ideas as to why his tTG level would be so high? Could it point to something else or, is tTG testing just used to diagnose Celiac disease? Thanks.
Melissa says
I know this thread is OLD, but I have to tell those of you with children getting negative results from a biopsy, this DOES NOT mean your child doesn’t have celiac. Young kids often times don’t have damage to their villi and so even edoscopys aren’t 100%! If the tTG is high, I’d be taking your kids off of gluten, or they may unnecessarily suffer and you’ll feel horrible. My grandmother died a horrible death of stomach cancer from malnutrition, because of undiagnosed celiac.