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) 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). 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. And let’s not forget folks that A COOKIE IS STILL A COOKIE – even if it’s 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 GF 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!
1) 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.
2) 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, 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!
Want to know the proper way of getting tested? Here’s the scoop from our best friends at Celiac Disease Foundation. These are snippets from their website that is incredibly helpful to getting a proper diagnosis.
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.
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The First Step: tTG-IgA Testblood screening
There are many screening blood tests for celiac disease but the most sensitive and commonly used, whether symptoms are present or not, is the tTG-IgA test.
Tissue Transglutaminase Antibodies (tTG-IgA) – The 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. 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.
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.
While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.
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 us 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.
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). Genetic testing can be done by blood test, saliva test or cheek swab.
The only way to confirm a celiac disease diagnosis is by having an endoscopic biopsy. A pathologist will assign a Marsh classification to the biopsy findings.
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.
If the results of the antibody or genetic tests are positive, your doctor may suggest an endoscopic biopsy. An endoscopy is a procedure that allows your physician to see what is going on inside your GI tract. A scope is inserted through the mouth and down the esophagus, stomach and small intestine giving the physician a clear view and the option of taking a sample of the tissue.
This is usually an outpatient procedure. Samples of the lining of the small intestine will be studied under a microscope to look for damage and inflammation due to celiac disease. It is recommended that the doctor take at least 4 duodenal samples, including at least 1 from the duodenal bulb, in order to obtain an accurate diagnosis.
Thanks to CDF for the great info. Always visit CELIAC.ORG if you have any questions about celiac disease and need medical advice from top celiac doctors.