I blogged earlier today about my views on celiac disease.

Until fairly recently, it was thought that celiac disease was an extremely rare disease, affecting about 1 in 10,000.  But recent studies have shown that, in the US, somewhere between 1 in 133 to 1 in 250 have celiac disease.  Right now, though, the dx rate is showing 1 in 4000 w/ CD, meaning that it is *severely* under-diagnosed.  (Right now, Italy leads the world in diagnoses, because each child entering Kindergarten is required to be tested.  So, oddly enough, the country known ’round the world for its wheat pasta is becoming the most aware of celiac disease in the world, and makes me think that it would be a pretty celiac-friendly place to travel.)

My many personal thanks to Dr. Alessio Fasano, who came out with a huge study in 2003, showing CD to be much more prevalent than originally thought.  The word is still getting out, more than three years later, but that study led to celiac disease at least being on the radar.  Most doctors have at least heard of it now, and have a general understanding of what it’s about, and about how serious it is.

But… at the time that we were going through our own journey to diagnosis, the study wasn’t yet published, and most doctors had not even heard of celiac disease.

Wesley’s illnesses started at age 5 months, maybe earlier, when he was still 100% breastfed.  (The gluten molecule is transferred into the breastmilk, so babies with extreme sensitivity react even to that.)  He just had tons of diarrhea.  I mean, 6-15 episodes a day.  I brought it up to his Wes’ pediatricians, but they blew me off, saying that breastfed babies’ stools are looser.  Well, duh.  But, Wes was my 3rd baby, and by golly, I should know what poop is supposed to look like, and Wes’ was *not* right.  It stunk to high heaven, and it was always watery. 

I was going to wait until he was 6 months to start any kind of solids, but he started refusing b’milk, and he wouldn’t take formula (though I only tried it a few times — but, in retrospect, formula would not have worked, because he also has sensitivities to soy and until his gut was healed, dairy).  It seemed no matter what I fed him, he still had diarrhea — and the rare times he didn’t, I couldn’t figure out why — probably because he was on a combination of his own diet and b’milk, and things had to line up just right between my diet and his in order for him not to have symptoms.

He was also very sick with virtually everything else.  He got sick with everything that came down the pike.  He got ear infections so bad that his eardrums burst five times in his first year of life.  He ran a fever of 99*-101* non-stop.  His doctors said that “some babies just run hot.”  What???? 

He also almost stopped gaining weight.  He was a full 10 lbs at birth, but he didn’t double his birth weight until he was 10 months, and by 12 months, he was barely 21 lbs.  His doctors said that sometimes big babies “level off” and just because they’re big at birth doesn’t mean they stay big forever. 

I just knew something was not right.  It wasn’t that he was just breastfed.  It wasn’t just that he “ran hot.”  It wasn’t that he was just “leveling off.”  It was something.

Finally, at his 12 month check-up (when he was nearly 13 months), I put my foot down.  I told them they had to find what was going on with Wesley.  That’s when they took a good look at the DIVE going on, on his growth chart, and dx’ed him “failure to thrive” and sent him for all sorts of testing.  He went through three rounds of blood tests, and a stool-collection test, which I did.  YUCK.

After a month of testing for Wesley, (seemed like forever back then) for ALL sorts of diff things, all of the tests came back negative (though he wasn’t tested for CD).  After the last round, and the doctor telling me, over the phone, that if he was still exhibiting symptoms in three months, they’d try again.  That was NOT acceptable. 

I hung up the phone, cried, put all the dc down for a nap, went on WebMD .  I spent a grand total of four minutes on there, with their symptom checker before I found info diarrhea in small children.  Most of the things on the info page I either knew he didn’t have, or had already been tested for.  But then… there was celiac disease.  I was vaguely familiar with it, because a friend of the family has it, too.  I clicked on their link for more info, which at that time, linked me to the nonprofit research site www.csaceliacs.org.  I got very excited, because not only did they describe his diarrhea (gross, but true), but they described the skin condition dermatitis herpetiformis, which Wes, unbeknownst to me, also had!  I even had another appt w/ the dermatologist later that week, b/c there were certain fiercely itchy areas on Wes that were not clearing up with the eczema treatement (Protopic). 

I called my son’s ped, told them I was going to put him on a gluten-free diet, they said, “OK.”  In one sense, that was a GREAT decision, because in five days he had the first solid stool of his life. In five weeks, he gained 3 lbs 1 oz, after gaining 2.5 lbs in 7.5 previous months.  BUT, they should have immediately sent him for either the blood test that checks for CD, or at least sent us immediately to the g.i. doc.

By the time we got to a ped g.i. doc, he was too free of gluten for the tests to show CD conclusively. B/c of the massive turnaround in symptoms (weight gain & others), they dx’ed him “presumed celiac” but can’t say definitively unless we put him back on gluten. Um… no. We CAN’T. He’s so sick on gluten, and such a happy, spunky, healthy boy being g.f.

Actually, the same thing happened w/ me…  I spent a lifetime with “digestive problems” that were so familiar to me I thought they were normal.   It was only after I got married that my husband was like, “Umm… no.  That is not normal.”  He was more concerned with my health than I was.  Before I got pg w/ my first, I went through a complete physical to try to find the root, and ended up humilated by a doctor who accused me of being a hypochondriac.  Then, about 2.5 years later, I went through an exhausting 3 year search to find out, “What is WRONG with me???” with a much nicer doctor.  He had me being tested for near-everything except CD.  Those years turned up a host of various dx’s, but not CD.  So, shortly after my “search” for the key to my own health woes ended is when everything came to a head with Wesley.  As I was educating myself as Wesley’s mother, I had printed out a list of symptoms, and went down it mentally, and was like, “Wait a minute.  I have that, I have that, I have that.” So, I went gluten free on my own.  It had nearly immediate results.  Within three days, I could tell a major difference.  But, at that point, I was highly distrustful of doctors, since they had been SO WRONG about Wesley.  It was very a very startling and eye-opening experience that led me to the conclusion that doctors could not be trusted.  Even though I did have a kind, curious and tenacious personal doctor, I was disillusioned about ”traditional” medicine, tired of the three year search I had just gone through, and scared that he would minimize my concerns and tell me that celiac disease was not “it,” even though I knew it was.  When I finally went to see him, he sent me for a round of blood work, but by that point, I’d been gluten free for about three months, so nothing showed up on the bloodwork.  But, because he was familiar with me and my symptoms, and being gluten-free caused a near-complete cessation of symptoms — even things that had been dx’ed as “chronic,” he called me, as well “presumed celiac disease.”  I would have to go back onto gluten to get an official dx.  Dh and I both say, “NO WAY” to that.

Recently, my OB doc, who is refreshingly anti-establishment, told me to NEVER get tested.  He told me that if being g.f. for that long continued to have positive results, he said, “Then what’s the point?  You don’t want an official diagnosis that will just go on your permanent record.”  He brought up the point that it could, in the future, cause problems with insurance.  He advocated me continuing to do what I have done the last nearly-four years, which is just to eat gluten free, know that I have celiac disease, but not worry about a diagnosis.

A dx would be good, at this point, only in that I would be able to deduct the money spent on g.f. items from our taxable income.  But… in my OB’s viewpoint, it’s not worth it.  And from my viewpoint, there is NO WAY I’m going back on gluten for *any* reason that I can control.  The results of consuming gluten can keep affecting one’s body for up to six months, since gliadin, for unknown reasons, can be stored in the body’s liver for that long.

Well.  That’s it for now.  Time to get off the celiac disease soapbox. 

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