<<Disclaimer: Verify this information before applying it to your situation.>>

My original question was regarding the Enterolab genetic results that we received for my our daughter. I was confused about the relationship between Celiac Disease/gluten intolerance and following their recommendations for a gluten-free diet based on her predisposition to gluten intolerance. This reply clearly answers my question:
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Having the Celiac gene DOES NOT MEAN that one starts a gluten free diet.  It is not even a diagnosis of CD.  Actually, only about 5% of the population who show positive for either of the genes go on to develop CD at some time in their life.

So this sentence is backwards "Therefore, she does not have Celiac disease today, but if she does not follow a gf diet, she will develop it. Is that accurate?"

It SHOULD read "Therefore, she does not have Celiac disease today (just a genetic pre-disposition to it), and she MIGHT develop it sometime in the future (about 5% of gene carriers go on to develop Celiac Disease) based on current research)."

Some more information:
There are 3 things that need to be present to develop Celiac Disease - One, you have to have a genetic predisposition, which your daughter has been confirmed as having.  Second, you need to have a leaky gut showing mal absorption - some of the signs are - such as diarrhea, anemia, mouth sores, teeth enamel problems (children), fertility and in some people weight loss - I just listed a few symptoms.  Third, you need a trigger, which is some impact or change that the body goes through, for some it is adolescence, surgery, pregnancy, losing a job, traumatic accident or injury, retirement etc.

So your daughter currently carries the gene for CD or gluten intolerance and that is it (I presume she does not have any symptoms).  We all carry genes for various conditions - it is whether they develop or not is the next step - such as diabetes, heart problems, arthritis, thyroid, other autoimmune conditions, cancer etc.

Once the condition is triggered your daughter should start getting some symptoms, however not all Celiac's have symptoms as some CD is silent.  She then should have the Celiac blood panel of tests done which includes the tTg test which current is the best indicator of active CD or Gluten Intolerance.  A positive result is over 20 and up to 200 units.  A negative blood test is any result under 20.  Most people with newly activated CD show close to or at 200 units and going gluten free brings them down to under 20.  I am currently at 3 for example, after 30 years of being diagnosed and eating gluten free.  Any results less than 20 units is a negative test or shows someone diagnosed with CD that they are following a gluten free diet successfully.

If the tTg test is positive, then an endoscopy is done to take a couple of small biopsies from her upper intestine area (NOT A COLONOSCOPY) to see if your daughter has developed Celiac Disease (the flattening of the villi in the intestines).   If the pathology comes back indicating that she does not have CD but her tTg results are still raised then she is diagnosed with Gluten Intolerance.

If she is diagnosed THEN your daughter starts a gluten free diet and remains on it for life (or depending on how the current medication being developed works out)!

If the biopsy comes back as she does NOT have CD, then your daughter can try a gluten free diet for a couple of months to see if that helps resolve her symptoms.

The key is that you have just gotten a gene test done which shows if in the future she has the possibility of developing CD and have completed the 1st stage of 3 to diagnose CD.  As you now know that she DOES carry the gene you could move onto the Celiac blood panel test to see what her tTg result currently is.  If it shows negative and she has no symptoms then she should remain on a normal diet.

ONE CAN ONLY BE DIAGNOSED WITH CELIAC DISEASE WHEN CONTINUOUSLY CONSUMING GLUTEN.  If your daughter goes gluten free now she will never know if she indeed has Celiac Disease or not - which for some people is important to know due to the medical implications that Celiac Disease (not Gluten Intolerance) can have on her health over her lifetime (such as predisposition to other autoimmune diseases).

I hope that helps!  I have a great picture in one of my CD books I can scan and send to you if you want - it shows the difference between CD, gluten intolerance and allergies and defines the different testing process - all broken out in a tree which is really easy to understand.

The benefit you have now with your daughter is that CD is SUCH an easier disease to get diagnosed now due to the increased awareness and the gene testing - if she needs to start eating gluten free also there is SO MUCH more food out there to ease her into it as being a child, it is important not to feel different.

Lynda
Vancouver, BC



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