Help understanding labs

[Lmmccotter]

My Dr recently emailed me to say my celiac labs were abnormal after I visited because of stomach cramps and diarrhea for the past few months. Of course there was no further explanation of what these labs mean, just a referral to a GI which is taking forever. Can anyone interpret these for me? 

[cyclinglady]

Hi!

Know that we are NOT doctors, but you (or anyone else) can see several test positives.  That means that you are likely to have celiac disease.  The next step is to consult with a Gastroenterologist.  Celiac disease is usually confirmed via an endoscopy to obtain intestinal biopsies.  It can also assess the damage and create a benchmark for future problems.  See if you can get a cancellation.  In the meantime, DO NOT go gluten free.  Why?  Because then your biopsy results will most likely be negative.  Positive blood test + negative biopsies = diagnostic LIMBOLAND!  

In the meantime, you can do some research, learn about the diet, ask questions here, and when your GI gives you the okay, then you can go gluten free.  

In between my blood test and biopsies, I consumed every possible yummy gluten-containing time that I could.  By the time I had my endoscopy there was no doubt.  I was ready to start feeling great again!  

[Lmmccotter]

Thank you for the reply. My main question about these labs was are the several positives enough for a diagnosis and what does the negative mean? I understand I’m not getting advice from an actual dr on here but was just curious if others labs looked similar and what the outcome was. Mainly, like you, I’m ready to start feeling better and even though I’d prefer not to have Celiac I would like some answers. I definitely do not want to be in diagnostic limboland! 

[cyclinglady]

It only takes one positive to get a referral to a GI.  You have several positives,  but that does not mean you have more damage or any damage at all.   The blood tests are only a part of the diagnostic process.  Researchers thought they would actually be enough for a diagnosis when they were developed, but lately they have agreed that the biopsies are still the gold standard.  I think it is because these antibodies can be increased due to other autoimmune disorders even though some of them are pretty specific.  These researchers are pretty good people and I do not think they are trying to make money.  I met Dr. Sheila Crowe who was last year’s GI Association President.  GIs still agree that biopsies are the best way to confirm celiac disease.  Google it.  

I had only one positive and had extensive damage.  I was glad to have the endoscopy because my GI was able to rule out other concurrent illnesses.  It also made sure that here was no doubt that I had celiac disease which made it easier for me to go gluten free.  A few years later, I had a gluten exposure.  I got really sick.  Sicker than when was initially diagnosed.  I keep blaming my symptoms on celiac disease.  Turns out repeat biopsies revealed a healthy small intestine.  I had healed.  But it also revealed autoimmune gastritis which had developed after my celiac disease.  I was glad to know though that I was adhering to the gluten-free diet.  I was kind of going crazy trying to figure out how gluten was getting into my diet.

my hubby went gluten-free per the advice of two medical doctors 20 years ago.    The diet worked.  But does he have celiac disease?  Who knows? But we worry if he gets arrested or has to go into a nursing home.  He does not have a legal leg to stand on (America  Disabilities Act).  Friends, family and his doctors do not give him the same support I get.  

Some celiacs can not get an endoscopy (no insurance).  In that case, they can go gluten free, check their bloodwork again after a few months to see if it decreases and if they feel better.  But we have had members who did did and now new doctors refuse to believe they had celiac disease.  If you take this option keep and maintain all your medical records for life.   Be sure your GI gives you a formal diagnosis in writing.