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Celiac Disease Insights: Clues to Solving Autoimmunity by Alessio Fasano

Here is the link to the Scientific American article that has garnered quite a bit of attention in the CD community.  It is amazing what this man, and others like him, have done to try and understand this elusive and “chameleon” of a disease, as I like to refer to it.

I was one of those that he described in the article that wasn’t “obviously” affected until later in life, at age 30 when my thyroid went crazy.  I do know though that DH entered my life at about 15 (my “grass” allergy).

My oldest son was “diagnosed” at age 5 by a blood test, the anti-tTG IgA. His “score” was a 36.  It was a 4 at age 3 when I first had him tested.  The normal range is 0 – 19.  My pediatrician sent us on for the biopsy and it came back negative.  No inflammation.  Not yet anyway.  It can take YEARS of repeated gluten exposure for the villi to flatten so a “positive” diagnosis can be achieved.  Everyone is different, with different levels of permeability of the small intestine, the genes involved, etc.  Why do we have to have the flattening and at what cost does that come with?  Enter what I refer to as the “sidekick diseases.”  Like my Graves disease.  Or Type-1 Diabetes, among many more.  Diseases that once you get them, there is no going back.  I will take thyroid hormone replacement medication for the rest of my life.  Those with Type-1 Diabetes get insulin for the rest of their life, etc.  These may have been prevented had the celiac disease been caught and stopped much sooner.  With diet modification.  No drugs or worse.

Sam was blessed with the best pediatric gastroenterologist I could have hoped for.  A doctor ahead of a lot of his colleagues in the area of CD.  Just in my experience…”If your test was negative this time, you will never have to be tested again.”  “Do you have diarrhea?”,  “No,”  “Well, then you can’t have Celiac Disease.”  Really???

We spoke extensively on the phone when he called me with Sam’s negative results.  We talked about the “gold standard” for diagnosis, the flattened villi.  We also talked about what the positive tTG test indicated.  Sam’s body was reacting to gluten.  That, coupled with his mother’s positive diagnosis of CD & DH… it was highly unlikely this was not NOT going to turn into “full blown” CD at some point.

I agonized over the decision I needed to make.  My husband supported me either way but was going to leave it to me.  Do I let Sam be “normal” for as long as he can and eat the Happy Meals, pizza, cake, etc. that is typical of the American diet?  Or do I stop the progression now, let him grow and be healthy and attempt to avoid the “side diseases” that he will never escape?  I voted for his health.  I want better for him, I do not want him to battle the health problems that have plagued me.

Reading this article has quieted the demons in my head that haunt me everyday, wondering if I am doing the right thing.  I now know I am.  I am buying him good health time until there is a treatment for Celiac Disease, and he can break the chains that bind us.  Thank you Dr. Fasano and everyone else who has worked so hard to try and understand this disease and others like it.

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Comments

  1. Anonymous says:

    Thank you for writing this. People think my family is odd for starting a GF diet without an "official" diagnosis. I want my children to grow up healthy. Not get sick and then get diagnosed in 15 or 20 years.

  2. Heidi says:

    You are welcome. Follow your parental instincts. The way I see it, they can always challenge the diagnosis when they are adults if they want to. My job, as a parent, is to get him to adulthood, as healthy as possible. The thing I have missed most since my diagnosis is not the Happy Meal, etc., it has been my mom's cooking, and the memories associated with it. My boys will always have their mama's home cooking.

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