Guys, I cannot urge you ENOUGH to get properly tested for celiac disease before going gluten-free. There are too many people who are preaching the fad dieting aspect of living gluten-free that it is actually hurting people getting properly diagnosed for celiac disease. People just go gluten-free all willy nilly without understanding why a gluten-free diet is necessary. Gluten-free is a medically necessary diet for those who cannot eat gluten – those with a wheat allergy (an actually food allergy – less common than celiac), diagnosed celiac disease (about 1:133 – probably now more like 100) or non-celiac gluten intolerance (more than celiac disease but certainly not the amount of people who are eating gluten-free right now in America). So why is everyone ordering gluten-free pizza crust, even if they don’t have celiac or a medical issue?
Gluten-Free Is Not a Weight-Loss Diet
Regular people are going gluten-free because they (mistakenly) think that gluten-free substitute food is more healthy. Not true I say, not true! Gluten-free subs can be more calorically dense than their gluten-full counterparts. They are also often not fortified with vitamins and minerals like their gluten-full counterpart. And let’s not forget folks that A COOKIE IS STILL A COOKIE – even if it’s gluten free!
Don’t Just Try Gluten-Free
Don’t let some doctor talk you into going gluten-free just to try it. If you cannot get tested for medical or financial reasons, that’s a whole different story – but I hear far too many stories of “oh my chiropractor said that white bread is the devil, etc.” and they go gluten-free without knowing what the real issue is. I see fitness bloggers all the time telling people to just try going gluten free to see if they feel better. While I agree that elimination diets are effective, you shouldn’t just “give up the gluten” without proper testing first. If you never get tested you’ll never know if you have a food intolerance (gluten sensitivity) or an autoimmune disease (celiac). While I believe that NO ONE SHOULD CHEAT (non-celiac gluten sensitivity or celiac disease), there is a serological and autoimmune difference with follow-up between the two. Know what you’re dealing with!
Why Should I Get Tested for Celiac The Right Way Now?
You’ll have to eat gluten again anyways
In order to diagnose celiac disease, doctors have to see active damage in your system. I know, it sounds really shitty that doctors have to make you sick again just to prove that indeed – you are sick. But that’s how it goes until we find better, more reliable testing methods. You will have to consume gluten again for both the blood test and the endoscopy. It’s a few servings a day of gluten for 6-12 weeks according to Mayo Clinic, so strap in for a bumpy ride.
However, genetic testing does not require consuming gluten. However, there’s a caveat that the genetic test only lets you know if you are predisposed to celiac disease, not if you have active disease. Many have the genes for celiac that never turn into active disease. But, if you refuse to eat gluten again to get tested, a genetic test is a good way of at least knowing your chances of being a celiac. Note that the genetic test is often expensive and often not covered by your insurance.
While some of you may argue against “cheating” for this extended period of time for an endoscopy and blood test, this is the only reason to cheat – a medically necessary way to tell if you have celiac disease. I had to do this after misdiagnosis after misdiagnosis. it’s not pretty, but it’s a choice I had to make to secure a diagnosis. I was under medical supervision during this time, and think that it was the best choice for me and knowing that it was the only way I could know what was really wrong with me.
Proper follow-up care
An autoimmune disease is no small potato. MINIMUM you should receive follow up care one year after diagnosis. There is follow up care that is warranted when you are diagnosed with an autoimmune disease – follow-up blood tests and/or endoscopies, nutritional follow up testing, bone DEXA scans to measure bone density, and everything else that goes with an autoimmune disease. I’ve met a lot of people who give up gluten due to a sensitivity and were not tested for celiac that do not know that if they did have celiac, there is follow up protocol!
How To Get Tested for Celiac Disease
First, let’s talk about how not to get tested for celiac disease. There is no basis on a skin prick test for celiac disease (there is for a true wheat allergy, but that’s a different mechanism. You cannot be tested for celiac disease using: a stool test, urine testing, muscle testing (it’s a scam, seriously), hair samples, or saliva (except gene testing).
The perfect process is that you’d first get a blood test, which is a screener. If that’s highly positive, you’d go straight into an intestinal biopsy (while still eating gluten), and the GI would be able to see intestinal damage in their pathology report. You’d then be diagnosed with celiac disease and you’d stop eating gluten forever. But we know that life isn’t perfect, and that’s rarely how people are diagnosed!
Blood Screening (Serology)
All good things start with a simple blood test, while still eating gluten.
According to Celiac Disease Foundation, a simple blood test is available to screen for celiac disease antibodies. People with celiac disease who eat gluten have higher than normal levels of these antibodies in their blood.
For Celiac and the Beast readers, we have an easy way to get screened for celiac disease – a FREE celiac screening blood test from HealthLabs.com.With HealthLabs, there is NO doctor referral or insurance necessary, and is available at over 2000+ conveniently located CLIA-certified U.S. labs. You’ll get results in 1-3 days. All you need to do is call 1 (800) 579-3914 and tell them that you have the Celiac and the Beast FREE CELIAC BLOOD SCREENER TEST (no promo code, you just have to tell them that). They can help you find a draw site near you. All you’ll have to do is go in to the draw site with your free order, and you’ll get results in 1-3 days!Thank you to HealthLabs.com for offering this service!
Top celiac foundations, including Celiac Disease Foundation, state that the Tissue Transglutaminase IgA antibody is the best screen for celiac disease. They state that the Tissue Transglutaminase Antibodies (tTG-IgA) test will be positive in about 98% of patients with celiac disease who are on a gluten- containing diet. This is called the test’s sensitivity. The same test will come back negative in about 95% of healthy people without celiac disease. This is called the test’s specificity. Note: There is a risk of a false positive especially for people with associated autoimmune disorders like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease.
There are other antibody tests available to double-check for potential false positives or false negatives. According to Celiac Disease Foundation, these tests can be run cocurrently with the tTG-IgA to tell the full story.
IgA Endomysial antibody (EMA): The EMA test has a specificity of almost 100%, but is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test. It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord. It is usually reserved for difficult to diagnose patients.
Total serum IgA: This test is used to check for IgA deficiency, a harmless condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.
Deaminated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.
Note: while it is very rare, it is possible for someone with celiac disease to have negative antibody test results.
Note: you do NOT have to be eating gluten for genetic testing, as genes don’t change based on your diet. People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 40% of all people. Since only 1% of the population has celiac disease, carrying HLA DQ2 or DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease. It simply means you have an elevated risk of developing celiac disease (CDF states it increases your risk to 3% instead of 1%).
MORE INFO HERE: Did you get a 23andMe test that showed you carry the genes for celiac disease? What does that mean? I wrote about it all on Celiac and the Beast!
According to CDF, genetic testing can be used to rule out celiac disease when a patient is already on a gluten-free diet or test results are inconclusive, and to encourage first degree relatives to get antibody testing (every 3 years or immediately if symptoms develop). Ask if your insurance will cover genetic testing, as it can be expensive if not covered by your plan.
The Biopsy: Key to Celiac Disease Diagnosis
As of 2019, the gold standard for celiac disease diagnosis is still an intestinal biopsy, done endoscopically, by a trained gastroenterologist (or other knowledgeable doctor) who understands celiac disease. Based on the samples taken throughout your intestine during the biopsy, a pathologist will assign a score on how badly it is damaged.
According to Celiac Disease Foundation, “an endoscopic biopsy will tell you (1) if you have celiac disease, (2) if your symptoms improve on a gluten-free diet due to a placebo effect (you feel better because you think you should) or (3) if you have a different gastrointestinal disorder or gluten sensitivity which responds to change in your diet.” I’ve been to Digestive Disease Week (a gathering of the top professional minds in gastroenterology) where case studies were brought up of patients who thought they were celiac, only to have microscopic colitis or another digestive disease instead of celiac. This is why a biopsy with a knowledgeable GI is so important for diagnosis!
Tagged: celiac, celiac disease, celiac disease diagnosis, celiac disease test, celiac genetic test, coeliac, genetic test
So true! And you may have an allergy/sensitivity to something else altogether. I have a friend who’s son was sick all.the.time. Because my son has celiac, she asked me what I thought about her son just going gluten free. I told her to get him fully tested and screened to know exactly what was going on. Turns out he is allergic to rice! Can you imagine how much sicker he would be if he just went gluten free? Testing is so important!!
I’d like to know more about what should be included in follow up testing. I’ve been gluten free for 6 years. I didn’t know there was a test prior to eliminating gluten from my diet, as there wasn’t as much information readily available to me at that time. Since I am not willing to go through a gluten challenge to get tested, I just want to know what to look out for with my doctor.
Are you looking to find out if it’s celiac or something else? As a celiac, the follow up tests would be an endoscopy after a year on the GF diet to see if things are healing in your intestine (no gluten needed), blood work, nutritional testing, bone DEXA scan, and overall health evaluation.
After being tested for various things over the course of about three years, my doctor finally did an endoscopy, and diagnosed scar tissue on my duodenal lining, but they still didn’t do a biopsy. They told me going gluten free would probably help, and they sent me on my way. I then saw a homeopathic specialiat, not an Md, who tested me by way of elimination diet and agreed it was gluten based on the results through that. I have now been gf for 3 years and really do feel better. Although I do worry if it’s really Celiac that I could have worse damage than I know, but I don’t know if I could really put myself through that again just to find out if it’s more than NCGS. Is there a way around going back to gluten to find out for sure?
Get a genetic test to see if you are apt to have celiac disease or not, but if you are 100% gluten-free, then it won’t change much besides follow up care.
In Feb. I tested positive for CD through blood work. My doctor said my levels were so high there was no need for endoscopy at this time. Also that he was never so sure about anyone’s CD diagnosis as he was of mine. My sister also tested positive through blood work from another Dr. Her Dr wanted to do endoscopy but her insurance won’t cover it. My mom tested negative from blood work and endoscopy. We have all gone GF and have felt much better. I often wonder about having the endoscopy done especially after reading articles like this. I also have hypothyroid with Hashimoto’s the Dr I see for that also agreed with my PCP about endoscopy not being necessary. I would like to hear your thoughts on this.
There plenty of blood work that can be false, which is why it’s only used as a screener. Since you are already doing gluten-free and staying safe and not cheating (I hope!) then you’ll have to do the genetic test if you want to check to see if you confirm if you have celiac genetics.
This may sound like a silly question… but since I’ve already been gluten-free for a year-and-a-half (believe me, I wish I would have done my due diligence prior to doing an elimination diet), where does one go to have genetic testing done — regular doctor, specialist, someone else?
I went to Mayo Clinic, but you can ask your GI doctor who they would recommend for it. They might be able to do it there. You can always seek out a genetic counselor as well, but it’s a fairly common genetic test. HQDLA 2 and 8.
Thank you for posting this. So well-written & spot-on!
Hello. I’m reading this a long time after you originally posted it so I was just wondering, am I still able to get the celiac test through health labs for free?
Yes it should be!
My daughter is so sick… what a summer it has been. ER or hosptial care to many times to count for a summer for a ten year old girl. Her blood is not showing gluten issues. She has had a major work up and they cannot find anything else. She is scheduled for an endoscopy to take a few biopsy for both gluten, chrons, UC and EOE. Any idea on how many people you have come across in your GF life out there are allergic to gluten but it didn’t pop in their blood. She is having massive constipation, vomiting, confusion, and joint pain episodes.
Find a functional doctor. Get tested for candida overgrowth, very common in the US population across all ages. Have you considered also leaky gut?
My 23 and Me celiac gene test came back positive. I was blood and biopsy diagnosed 34 years ago. I think it’s a pretty accurate test 😊