Me: "Who has the best seat in the house, me or daddy?"

Adam: "Well, Daddy's is nice, but yours is best. Your's is squishier."

Friday, January 17, 2014

Dumbo Feathers

Tessa, buried into my sweater, refusing to even look at Santa.

She started up again.  "I'm nervous mommy."

"There is nothing to be worried about.  It's just a church party.  We will be in the church with all of our friends and we will eat dinner."

"But what if I get sick?!"

This has been the template of every conversation we have had with Tessa for as long as recent history permits me to remember.  You see, up until a few months ago we had Tess on a gluten-free, dairy-free diet because our own home experiments showed that she responded well to the elimination of those two food types from her diet.  Naturally, we decided she was allergic to them.

Tessa is not allergic to gluten.  Or dairy.  

WHAT?!?!  Are you kidding me?!?! No, I'm not, and don't call me Shirley (Sorry, bad Office humor, not a misquote from Airplane).

It is important that I write about this because what we have learned in the last 6 months could change the lives of others.  Please understand, I am a firm believer that food intolerances exist and can destroy the functional life of a person.  It just happens that Tessa doesn't actually have them.

If you are just joining this story, let me go back a bit.  At about age 5, Tessa began to complain that her tummy hurt.  Complaints went from once a week to once a day to aaaaaall daaaaaay loooooong, every day.  It was exhausting and heartbreaking to see her suffer, and nothing seemed to help.  A doctor suggested it was IBS (Irritable Bowel Syndrome), something I was diagnosed with 22 years ago, and well known to me and the rest of the civilized world as code for I Be Stressed.  I refused the hasty diagnosis and began studying her symptoms and trying things to help her.  We made the bold move to take her off gluten to see if she would improve.  We bought her lots of replacement foods that were gluten-free, and taught her how to read labels and look for code words -food starch, barley, soy sauce - for things that had gluten in them.  She began to improve that very first day.  Each day got better, and while she did have an occasional bad day, we assumed that she must have gotten some gluten-contaminated food.  We became more diligent, having containers of PB, mayo and jam that were solely for her use to avoid gluten contamination.  It helped, but after about a year, we heard the familiar refrain of "my tummy hurts" more and more often.  I decided to re-examine her diet, and this time removed another common offender; dairy.  Again, Tessa responded instantly and very well, but this time in only six months she began complaining of pain, irregularity and diarrhea. Feeling helpless, I returned with her to the doctor, desiring more thorough testing.  The pediatrician said she would have to refer us to a gastro specialist, but that first we would have to go to an IBS "class". 

I have unhappily been subjected to my health insurance's "classes" before, but this was the only door to the specialist, so we opened it.  During the first session Guy and I sat and listened as total skeptics, knowing that THIS was not OUR child.  The room was filled with parents and their possibly moody, certainly streesed-out teenagers.  We clearly didn't belong.  Stress management?  What could Tessa have to be stressed about?  "Let's see, Chex or Corn Pops?  Polka dots or stripes?  Hello Kitty or Strawberry Shortcake? Oh, the humanity!"  

But then close to the end of that first hour a number popped out of the blah-blah-blah.  One year.  That people with IBS are particularly receptive to the placebo effect, and even show great temporary improvement after treatments as extreme as gal bladder surgery, but that after about one year, symptoms usually return.  

Uh-oh.  Guy and I did that raised eyebrow thingy at each other.  The more they talked, the more this was starting to sound like our child.  A few studies and statistics later and we were more than a little convinced that we should try a few suggestions, the first being accepting the possibility that Tessa might have IBS.

We decided to find out.  If she was truly dairy- and gluten-intolerant, there was a surefire way to find out.  One big lie and a bowl of run-o-th'-mill ice cream later and we had our answer  ("This is the best dairy free ice cream ever, mom!  We have to buy this again!").  We fed her dairy for three days with no ill effects, and then we decided to tell her.

She looked worried.

It was like we had taken her coat away and sent her out in the cold.  She was confused and insecure.  We tried to celebrate, to tell her all of the cool things she could now enjoy.  Then we told her that next we could test gluten!  Wouldn't it be cool if she wasn't really allergic?  How awesome would it be to go to a party and just eat?!?!

She started crying.  "No!  I'm gonna get sick!"  She fell completely apart.  She kept herself on her dairy free diet for several more days, all on her own.

We decided to just keep her on her gluten free diet for a while.  She asked often if we were tricking her, if there was gluten in her food.  About 3 weeks later I made her favorite gluten-free brownies, and loaded them with wheat flour.  


I tested for several more days before telling her.  When we did, she protested and said I was wrong, that gluten makes her sick.  We all assured her that she had eaten gluten every day for half the week without a reaction.  She got a worried look, and then shrugged her shoulders and said, "So can I have a snickerdoodle then?"

I wish that were the end of this little story.  It's not.  You know how Dumbo thought he needed to have that feather in his trunk to make him fly?  Well, believing that she had some control over what was happening in her body by controlling her diet made Tessa feel safe and protected.  When Guy and I cooked for her and provided special items from expensive little stores, her stress was reduced because she felt well cared for.  

Her Dumbo feather is gone now.

Had I known what it would do to her to take away her belief that she had total control, I would have kept her on the gluten and dairy free diet forever.  Her stress has shot up.  She worries about things that are coming, good or bad.  She panicked as Christmas got closer and closer, and she couldn't even say why.  "Because it's coming and I'm worried but I don't know why,"  She said.

It is going to be a process to teach Tessa how to deal with her stress.  Her tummy troubles have increased ten fold.  She cries a lot more now, and isn't able to do some of the things she used to do, like visiting with Santa.  We try to strike a balance between offering compassion and telling her, "You're fine, suck it up."  Of course I would never actually say that (okay, maybe under my breath from the other room), but I also don't want to show undue attention to the problem, reinforcing her belief that indeed there is something to be worried about.  Still, a natural born worrier myself, I know that sometimes what I need to hear most is simply, "It's okay, you're going to be okay."

And eventually, I'm sure it will be.


Jan and Carol Van de Wetering Family said...

As always, Laine, I love your post. Personally, I cannot judge, but I think there are indeed too many people who have gotten on the gluten, dairy, whatever, bandwagon. It's almost like the "thing to do." When in reality, for those who do not have an intolerance, I believe they are compromising the total value of the 'staff of life' and the other nutritious elements in dairy.

That being said, knowing YOU, I doubt not one minute that you always do your due dilligence and I'm so impressed with your knowledge and wisdom and beautiful example of motherhood.

So sorry for Tessa's pain. My Kerry started with stomach aches about age 9 and had them through young adulthood. She finally came to understand that she had anxiety and did a number of things to learn to manage her anxieties. That was almost 40 years ago (that she was 9) and I had NO idea of what it was, or how to help. You are blessed most of all with your tenacious diligence as well as a wise mind and so many resources available today.

You GO girl, and love and huggggles to Tessa.

Erica said...

I remember feeling the way I feel (depression, anxiety ) as early as 10. For whatever reason, I got more sad about things than other people. I don't know if it's genetic but I want to give her a big hug and tell her I know how it feels.

Erica said...

I remember feeling the way I feel (depression, anxiety ) as early as 10. For whatever reason, I got more sad about things than other people. I don't know if it's genetic but I want to give her a big hug and tell her I know how it feels.

Bald n Beautiful said...

Thanks for the post. This gave me some new ideas for my daughter who struggles with unexplained stomach aches.