Non-Celiac Gluten Intolerance? – Testing: Part Two

Finally got my OWN copy of “Gluten Free Made Simple” (Cookbook), and this great educational book called, “Healthier Without Wheat”

Before I knew anything about celiac disease,  I did know you could get a simple blood test to check for the antibodies that were attacking gluten in your body.  If a doctor suspects celiac disease, this is usually the first test run.  The test checks out the following:

Deamidated Gliadin Abs, IgA (Gliadin is the gluten found in wheat, each grain has a different gluten name)

Demidated Gliadin Abs, IgG

t-Transglutaminase (tTG), IgA

Tissue Transglutaminase (tTG), IgG

Endomysial Antibody IgA

All of my numbers were low to below the “negative” response.

So given this test, most doctors throw out the possibility  of a gluten issue altogether.  Unfortunately for me, I wasn’t consuming enough gluten at the time this test was run.  Although I’m not sure it would have shown anything anyway…   About 1% of the general population is IgA deficient (and 2% of celiacs), meaning they produce very little IgA.  Therefore, any IgA test result will be low, and the IgA gliadin antibody test might be falsely negative, indicating they don’t have a gluten intolerance – even if they, in fact, do.

If that test were to come back showing a positive result (meaning, a reaction to gluten), most doctors would do a biopsy of the small intestine.  I was already scheduled for an upper and lower endoscopy to check for a parasite or crohns, so I just made sure to ask at my appointment, that the GI specialist would test for celiac disease.  Because that order was not on my information from my doctor, I believe the GI specialist was taken off guard.  I just wasn’t sure what else to do to be heard.  I had laid out my medical history, and reasons for my desire for the biopsies – but I’m unsure of how many test samples he took.

I do know he took a  BIG stomach biopsy to test for a parasite, because that really hurt for days.  It felt like a big area anyway.  {Incidentally that test came back negative for the parasite.}

The biopsy then came back negative for celiac too.  As he warned me before the test, because I had been off of gluten, this was highly probable to not be accurate.  I already knew in my heart it probably wouldn’t show up, but I still prayed for answers.  His suggestion for myself, and our kids (based on symptoms) was a gluten-free life.  I wish that was enough for me.  I needed that piece of paper – that proof.

It was during this time that I was reading on what else to do to get answers for myself, and now my children… who I realized were very symptomatic.  Many of the national celiac message boards were filled with people like myself.  They knew they had celiac, but felt like they were trying to get that information in their charts.  I felt like if it was this difficult for me, how on earth would I be able to get those answers for my kids – without running a whole hosts of unneccessary tests.

It was then that I heard about Enterolab.com.  I heard they had other testing resources available for people to do at home – and send in.  One of them was the DNA test.  It was a simple test (cotton swab) – and fairly inexpensive $150.  I knew if I could get the results back on my genes, I could get someone to help us.  I just needed proof that I knew what was going on.

So, I ordered the test, and waited the painstaking 3 weeks for the results.

In the mean time, my mother asked her oncologist about the DNA testing, and her Dr. didn’t bat an eye about running the antibody test, AND the DNA test right off the bat.

My husband announced that my results had been posted, and with a smile said… “You had better go look!”

It came as NO surprise to either of us – that my DNA test showed the following:

I have one of the main genes that predisposes me to gluten sensitivity and celiac sprue.  I also have a 50% chance of passing that gene onto each of our 8 children.

I also have non-celiac gene that predisposes me to gluten sensitivity… and have passed that on to every child.

With those genes combined, it told me that BOTH of my parents have that gluten sensitivity gene – that they have passed to each of their children (myself, and both of my brothers), and at least one parent also has the celiac gene.

My mother’s tests confirmed the same.  She was positive for the celiac gene.

This explained WHY my symptoms were so strong.  When you have TWO copies, like I did, this means there is an even stronger predisposition to gluten sensitivity than having one gene, and the result of gluten sensitivity or celiac is more severe.  Let me be clear that having ONE gene is enough for gluten sensitivity to still cause inflammation and major issues within your body, and the cure is the same as with celiac disease.

I’m currently reading a book called “Healthier Without Wheat” – which is a great book on all aspects of gluten sensitivity.  I highly recommend if you suspect gluten could be causing some health issues in your life, or in the lives of people you love.  Here is an except from that book, regarding the continued exposure to gluten, while having the gluten sensitive gene – pg. 134

“If you have a non-celiac form of gluten intolerance and you have been eating gluten for many years, you have accumulated a history of ingesting something that is toxic to your body.  You may notice that avoiding it 95% of the time relieves the symptom that you are treating, but you are still suffering some ill effects of ingesting gluten, whether you realize it or not. And it takes energy for your body to continue to deal with the problem (gluten).  It also increases the load on your immune system and decreases its ability to deal with other problems. 

The point here is that the more thorough you are at avoiding gluten, the healthier you’ll be.  If you want to truly optimize your health, you should avoid all sources of gluten.  Of course, the choice is yours.  But remember that the symptoms you experience from ingesting gluten are not the same as the damage caused.  Even if you perceive no symptoms at all, your body may still be undergoing change.”

It’s unfortunate that people must have active celiac disease “at that moment” they are tested to get that label to stay away from gluten.  Clearly, that is flawed or there wouldn’t be story after story like mine.  I’m thankful to get the answers I need for myself and my family now… so I can avoid 10 years of biopsies to get that ONE positive, and they can avoid 30 years of inflammation and malnutrition – like I have.  I no longer need that.  BUT, there are people – like me… who continue to suffer – and THAT is what drives me to keep talking.  Like the video I shared last week said (By Dr. Peter Green), having a biopsy be a gold standard for celiac disease, is like taking a cup of water out of the ocean and if you don’t see fish saying, “There are no fish in this water.”

Insanity.

For tips on how to start a GIG Stepwise Program check out www.gluten.net

“Sanctify them by the Truth; your Word is Truth.”

John 17:17

Posted on June 22, 2012, in Celiac/Gluten Sensitivity, Change, Diet, Our Struggles and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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