Yesterday I posted about the difference between celiac disease and gluten sensitivity.  Check out Part 1 of today’s post here.

Now that we know the differences between the two, the difficult part for many people is figuring out whether they could have celiac disease or gluten sensitivity.  The first and most important thing that I could tell you in this entire post is this: Do not go on a gluten free diet until you have your doctor perform the “celiac panel” blood test on you. If you go gluten free before the blood test, then the results would be skewed.  As you remove gluten from your diet, your gut begins to heal. Antibodies that were being triggered by gluten before the diet wouldn’t be triggered anymore, which could produce a false negative blood test.  Here are the recommended blood tests:

• Anti-tissue transglutaminase antibody (tTG – IgA and IgG)
• Anti-endomysial antibody (EMA-IgA)
• Anti-deaminated gliadin peptide (DGP – IgA and IgG)
• Total serum IgA
• Anti-gliadin antibody (AgA – IgG and IgA)–Used for children under 2

If the antibody blood test is positive, then your doctor will most likely recommend a small bowel biopsy (endoscopically).  As of right now, the biopsy is considered the only way to truly diagnose celiac disease, as it assesses how much damage had been done to the villi of the small intestines.  Unfortunately, many people went gluten free before they were actually diagnosed, so the only way for them to get a true diagnosis is to start eating gluten again and then get the blood test/biopsy.  If you’re gluten free, you can imagine how nobody would want to start eating gluten again and put themselves through the awful pain that comes along with it. For a lot of people, they are okay with not knowing specifically which one they have: celiac disease or gluten sensitivity.  Either way, they know that they have a problem with gluten, and the gluten free diet makes them feel better.

Unfortunately, some people get the blood test/biopsy and still get inconclusive results on whether they have celiac disease or not.  For these people, it may be beneficial to get genetic testing performed. Two specific genese are said to be necessary for celiac disease to be present: DQ2 & DQ8.  People without celiac disease can have these genes, and it doesn’t mean they will necessarily develop the disease, rather that they have a genetic predisposition to it.  Please remember that genetic testing doesn’t diagnose celiac disease; yet, the absence of the DQ2/DQ8 genes means that you don’t have it. (You could still be gluten sensitive)

Some of you may have a similar story to mine.  I got the blood test, which my doctor said was negative; however, one of my antibodies was slightly positive, which the doctor failed to tell me.  This is another reason I always tell my clients to have their results faxed/mailed to them so that you can analyze them yourself or have your Dietitian analyze them for you.  A lot of doctors will say, “You’re Fine,” but in my opinion, when it comes to blood tests of any type, what is normal for one person is not normal for another. All of my doctors thought I was crazy when I mentioned going on a gluten free diet to see if it would help.  (You can read my entire journey to healing here.)  So, since my blood test was negative, there was never a biopsy.  I took matters into my own hands after my blood work and did the elimination diet, which completely took away all my pain.  And when I do accidentally consume gluten, my joints swell up, my knees ache extremely bad, I get a headache for days, and sometimes the tingling in my fingers return.  I also get very moody if I’ve somehow gotten gluten. (My symptoms depend on how much gluten I’ve gotten.) Remember, everyone’s symptoms are different, and the degree in severity of symptoms vary as well.  For many people, the longer they’ve been gluten free, the more sensitive they become.

I want to end this post with this reminder: Do not go gluten free until you’ve had the “Celiac Panel” blood test done (and possibly a biopsy).  I hope you’ve found some answers to your questions. My prayer is that everyone living their lives with undiagnosed celiac disease or gluten sensitivity can find the cure: a gluten free diet and a life free from pain.

Source: Celiac Disease Foundation