Tag Archives: celiac disease

Mom to a Celiac Kid

I feel much more comfortable in my philosophy than I do in stripping bare and talking about my son and the dietary obstacle course we seem to always be running.  It’s safer.  More distant.  And no matter how one might disagree with my philosophy it doesn’t hurt like what could be said when talking about my parenting.  Still, there’s been one thing weighing heavily on my heart if not my mind lately – and it is this:  My child got gluten and I have no idea how.  None.

I had no idea it had happened until there was a violent intestinal episode (really two) in one day merely an hour or so apart.  His gut remained bloated for a few days, his pallor came back, circles under his eyes, behavior got worse, and his pickiness about food came back.  Honestly, we weren’t even sure he HAD gluten, but everything about the past week indicates that’s exactly what it was.  AND THERE IS NO GUARANTEE WE’RE RIGHT.

My job is to take care of my kids – day in and day out – make sure they’re healthy, eating properly, getting the time and attention they need, educating them…  And my four year old somehow got gluten.

Without even getting into the long term risks of a celiac ingesting gluten I’m stuck in that one place of fear and horror of not knowing how or when he got any.  Could it have been that time I sneaked a doughnut on the way back from a solo grocery store run?  Could it have been that he didn’t wash his hands after feeding the kitties?  Maybe it was when he, in all his petulant “I’m going to mimic my baby sister” glory, decided to put his mouth over the cap of a freshly bought bottle of gluten free smoothie (a treat)…  Perhaps he hugged his homebrew store owning father after he came home from work covered in glutens before dada could get changed.  In the end it matters little.

My husband and I have spent several days revisiting the episode in our heads (mine with the graphic and gory pictures of the results) and have still not come to any answer.

I do not say the following lightly, nor caustically, but it’s floated around my mind too much to ignore: There is no epi-pen I can give my son a shot with to stop his body from destroying its self over the run in with gluten.  A safety net does not exist; the ramifications are not a one shot horror show, but a long drawn out game of Risk.  One which carries increased risks of many cancers as well as the immediate malnutritive facet.  Slow death.

There is no balm to assauge my guilt and certainly not a glass of wine big enough to have me forgetting that somewhere along the way I failed my job.  I don’t have rage for the disease, nor for the people who simply don’t get the seriousness of it and want to promote things like nut bans (okay, maybe a little for them; lack of empathy does that to me), but I have a plethora of it for myself.

And so back to the grain free (dairy free/soy free/gluten free) life we go.


Celiac Disease

It sounds really scary, doesn’t it?  Anything with disease in it is seems to cause heart palpitations, perhaps a twitch of the eye, or shoulders to tense.  Celiac Disease caused no less of a reaction in me (except for the eye twitch – those are reserved for when my son hits this really loud and really high pitch).  Admittedly, now that I know more it still strikes a bit of fear in me.

The nuts and bolts of it are this: Celiac Disease is a symptom and an autoimmune disease.  It is literally defined by villous atrophy.  Those small little things in your small intestine that help you absorb nutrients?  Well, they’re blunted in someone with celiac’s and thereby hinders their ability to be healthy by causing malnourishment.  In some patients celiac presents its self as a bit of iron deficient anemia and perhaps, as is the case with my son, what is called a failure to thrive (he didn’t gain much weight that year).  It sounds so simple; such a very undramatic thing.  In reality it is sneaky, persistent, and destructive.

The reason this isn’t merely a case of gluten intolerance (and I don’t mean that as a way of diminishing that issue – a dear friend of mine has it and chronic pain is no walk in the park), but literally a level of intolerance that is more akin to actual allergy.  The reason it is categorized as an autoimmune disease is because of what happens when the person with celiac’s eats gluten.  The enzyme that our bodies produce in order to fix our intestines is called tissue transglutaminase and in people with celiac’s their bodies produce antibodies to destroy it as the gluten actually destroys the villi.  This is why a blood test looking for these antibodies is so vital in diagnosis (and, honestly, why a small intestine biopsy is not necessary).  In many cases physicians will also do tests called the IgA and/or IgG test to see what other antibodies the body is producing.

All of these things disappear when gluten is no longer present in the individual’s diet.  So much so that if they had stopped eating gluten in the weeks before these tests were done they more than likely would show a negative result.  This is possibly why so many physicians still opt for the small intestinal biopsy (might also be because it’s a rather costly little test despite the fact that it still boils down to getting just the right samples for a positive result to be shown; minimal damage/early stages makes it that much harder to get the “right” samples) for a definitive diagnosis.  Damage done to the intestines, depending upon the duration of gluten ingesting as well as age at diagnosis, can be reversible.  However, remaining gluten free is absolutely imperative for a patient with celiac’s.

When a person’s body can not handle gluten the risk of colon cancer, small intestinal adenocarcenoma are both increased should the individual continue to ingest it.

Now, the fun part.  The elimination of gluten is not merely getting rid of wheat or obvious wheat byproducts such as flour, but also avoiding spelt, barley, rye, kamut, triticale, malts, and according to one source couscous.  This also means any derivative of the above.  Sweeteners and thickeners are both very suspect until you know their origin.   Also, beware of vitamins as many of them are contaminated by or contain wheat (among other allergens).  Same goes for dried fruit.

I’ll save my longer rant for another time, but since going gluten free I must say this:  The US has massive issues with processed foods and cross-contamination.  Needless to say this is a huge adjustment for my family and, writing wise, has taken up much of my writing time.  It is no small thing to become in the know about all this stuff never mind trying to find a way of maintaining a balanced diet.  What I wish I knew before all this was how to read a nutrition label.  Not exactly the fun type of reading I usually prefer.

Anyone else have to deal with this?  Perhaps a family member or friend needing a dietary restriction?  Any sanity saving tips?

Celiac Disease – AKA Another reason for being absent

My child was anemic at the time of his third year check up.  He had all the hallmark signs of the iron deficiency- pale, lethargic, dark circles under the eyes, quick to get sick…  Much like I had at the same age.  An iron supplement brought him up into the barely there normal range and so further bloodwork was done.  Results indicated a certain level of inflammatory markers, and another still of  something that would indicate this disease.  We were referred to a specialist with the knowledge the only way to definitively diagnose Celiac Disease is through a small intestine biopsy; we declined.

In fact, we ignored the diagnosis.

Instead we took dairy out of his diet completely, another recommendation from the doctor, thinking that his love of the stuff was inhibiting his ability to get the range of nutrients he needed.  I bought vitamins with iron in them again and encouraged my son he needed to eat them; the ocean animals imprinted on their multicolored chalky surface convinced him.  In conjunction with this new plan of attack Vitamin C was increased in hopes it would boost the iron absorption.  He was still pale.  We started giving him probiotics in his juice or water.  His gut was still bloated – the sound of fermentation prevalent when you tapped it; his face appearing somewhat gaunt.  Months went by and we became more rigid about his meal schedule, bribing him unsuccessfully to eat his vegetables.  He could sit in a chair for hours with no interest in his legos or in talking.  When he was upset he became uncontrollable and violent.

And now here we are.  For the first time in my life I’m finding I have to read all food labels.  Everything on the shelves is suspect.  The not so good for you cookies I make for Christmas, sugar being my only prior concern, can not have flour in them for fear of my son wanting to eat one or, heaven help me, sneak one.  Going to a restaurant is something we have not even attempted as yet.  All his favorites are things he can not order.

I have given away several boxes of pasta, a bag of bread flour, a frozen Bertioli entree.  Crackers, which I can eat and are my son’s favorite, are hidden away in the pantry to be partaken of after he’s in bed; I eat them with cunning and strategy.  Sandwich bread has been tossed, chicken noodle soup put in the back of the cabinets for after hours munching, and the bag and container of all purpose flour are languishing as I contemplate what to do with them.  And then I looked at the multivitamin with iron in it.  Contains wheat, the label said, and so it was tossed into the trash when my son wasn’t looking.  As one would expect of poison, for that is what gluten is for my son, it was clever, quiet, and insidious.  It’s destructive capabilities being proven day in and day out by my complicit denial.  We were starving him with food.

There are no excuses for this.  None which even I can think of as reasonable.  For, truly, is there any reason one could give that would make you accept the destruction of their child from the inside out?  The justicar that I am has me screaming that there is nothing that would work for myself.  Oh, don’t get me wrong the brutality and high handedness of the physician and his staff, as well as their unwillingness to talk to us seriously about their reasons for all they did, left my husband and I completely distrusting everything they had asserted.  In the manner of futile wishes that is probably my largest one at this moment.  Not for my child to be absent this disease, as denial is certainly no longer my cup of tea, but for those we rely upon for sound advice in the most valuable aspect of life to operate without assumptions, particularly the one that renders them as completely superior.  All evidence to their assertions of diagnosis need to be presented.  Coercing the person before them should not be an option; reason and proof for the recommendations are the only ones that should be considered.  Show people they have good reason to trust.  There is no shortage of shame I have in myself for allowing this to waylay time my son could have been healthy; and no shortage of resentment in the professionals that act as thugs instead of experts who could be trusted.

Regardless of all this, I still had to throw out my soy sauce (gluten-free tamari now sits in its place), and am, even now, contemplating a new flour mixture for a pancake or waffle he might like because within one week of throwing gluten to the curb like the unwanted parasite she was my son’s color has returned, his attention span expanded, and the mood swings non-existent.  I have my son back.  The four different flours it took to make him chocolate chip cookies were well worth it.