Sister Knows Best . . . Sometimes

Yesterday, my brother published this blog post.  I invite you to read it right now because I’m going to reference it quite a bit.  As a matter of fact, this whole blog post is an extended comment on the post.  So read it.  Now.  I’ll wait.

And . . . you’re back.

He’s a great writer, my brother.  And, well, he kinda threw me under the bus.

In the blog post, he writes about my decision to go gluten free.  His words:  “It seemed a silly decision based on a scienceless hippy trend—a conversation starter rather than a valid health-based choice.”

When I read that, my mouth dropped open.  I was not joining a trend!  How could he say that?  As a matter of fact, just a month or two before my decision, I had told myself in no uncertain terms that I would NEVER go gluten free.  I had several friends jump on the bandwagon because it was they had heard how great it was and I was just not going there.  Granted, the friends in question had pantries full of supplements, drink mixes, cleanse directions, etc. all designed to detox, de-wrinkle, melt fat, clear skin, raise IQ points, grant world peace and enable flight.  They were/are the true wagon-hoppers.  I knew how I felt about them and I did not want that reputation myself.

Six weeks later I was in my doctor’s office looking at the beginnings of arthritis on my foot x-ray.  I had two pairs of shoes in my closet that I could wear without feeling as if a hot poker were being driven into my big toe joint.  I had a drawer full of wrist, thumb, and elbow braces/supports/wraps to pull out when I wrote or typed too much.  My doctor began laying out my future – over the counter pain meds until they didn’t work any more.  Then prescription.  Then we’d look at injections.  I didn’t even want to think about what was after that.  I had just returned from Lubbock where I helped care for my father as he recovered from yet another arthritis-related repair surgery.  I had just lived a weekend with my future.

I went home and really thought about my body.  What was going on?  Why was this happening?  Was the only treatment really pain management and some drug that might slow the progression?  I could not reconcile that the only way to help myself was drugs.  I had fought other conditions with alternative treatments, so that’s where I started.

Several years earlier I thought that I was going into early menopause.  I was having mood swings, night sweats, hot flashes, the works.  Yet my blood work looked normal – no indication of pending hormonal imbalances.  A friend suggested that I go to a nutritionist.  She had seen one for the same complaints and with supplements and a diet change she had gotten herself back on track.  I saw the same nutritionist as my friend, and within two months of supplements and balancing protein intake, the symptoms went away.

So that’s where I went for solutions about my arthritis.  I told her my diagnosis and the first thing she said was, “Give up gluten.”  She went into a long explanation, but I really didn’t hear her.  All I could think was, “Dang it!  Dang it!  Dang it!  I’m going to be one of THOSE people.”  I had to really weigh that option.  Just the thought of hearing myself say, “Could I have a gluten free menu?” was enough to have me seriously consider pharmaceuticals.  But the thought of the expense and toxicity of ingesting an increasing amount of anti-inflammatory drugs outweighed the prospect of being thought a flake.

So, in February of 2011, I went kicking and screaming into the World of Gluten Free Eating.

The change itself was actually not as difficult as I thought.  There are plenty of culinary options out there for GFers.  It was just the stigma that I hated.

About six weeks later, I noticed that I didn’t wince when I pivoted on the landing on the landing at home.  I took time and realized that there was no more red hot poker working its way through my hallux at every step.  All of a sudden, my entire shoe collection was open to me again.

I also noticed that I didn’t fight to stay awake during Sunday morning worship service any more.  Before I just thought that I was continually tired – after all, wasn’t I a stay-at-home-mom who had recently gone back to work part-time?  Didn’t I have reason to nod off when still?  (And my excuse before I went back to work was pretty much just the stay-at-home-mom part.)

My kids and I didn’t laugh at the weird noises my stomach made during bedtime because my stomach had stopped talking to us.  Hmmmm.  Maybe there was something to this gluten free business.

After I started seeing such good results, I brought up the idea of my brother trying it.  I knew that he had been diagnosed with arthritis years before so I thought that maybe it would give him the same relief it gave me.  He rolled his eyes.  And now you, dear reader, are up to date.

Yesterday morning, when I read his post, my jaw dropped.  I couldn’t believe that he would portray me as so shallow and flaky that I would just jump on a bandwagon.  (Because no, I’ve never done anything shallow and flaky nor jumped on any bandwagon in my life.  Never.  I swear.)  I thought that he made me out to be the type of person that he wanted to be sure HE wasn’t.  So I posted some comments to his Facebook link.  Not hostile ones, just ones defending myself.  My phone immediately played the Breaking Bad theme.  It was my brother’s ringtone.  He was terrified that he had offended or angered me.  I assured him that he hadn’t.  Not really.  However, I did ask him to change the way he portrayed me to reflect the fact that I did not make the decision to go gluten free based on a trend – I did it at the urgings of a professional as a way to manage pain.  He agreed to the change.

We continued to talk about our respective dietary journeys – his path infinitely more rocky than mine – and I realized that I couldn’t ask him to edit his blog post.  His initial perception of my going gluten free illustrated his point perfectly.  Four years ago, all he heard was that I was trying this trending thing.  He didn’t listen to my reasons – he didn’t need them.  I was becoming just another annoying gluten free d-bag.  And then I was the annoying gluten free d-bag who was pressuring him to join up.  Resistance is futile.  You will be assimilated.  That was his take on my decision four years ago – that was HIS truth of the situation.  How could I ask him to change his truth?  Who am I to ask another writer to censor a true story just because I don’t like the way I’m portrayed in it?  All of the facts of his post are true.  I told him not to change it.

(I just decided to tell my side, too.)

Now it’s my brother who is trying to pull ME onto the celiac “bandwagon”.  He has done extensive research and is convinced that I have it.  There is a genetic component to it so it is highly likely.  I exhibit some of the signs.   For instance, now that I have eliminated gluten from my diet, I can tell you within an hour if I have accidentally ingested some.  I get bloated, uncomfortable and my stomach will strike up a rather loud conversation with anyone in earshot.  (That can be awkward.)  My symptoms are not as dramatic nor as debilitating as my brother’s, therefore he believes that I have “silent celiac”.  That basically means that I (could) have all the damage with little to no pain.  Yay.

He frequently urges me to be tested so that I will know for sure.  Gluten damage for a celiac patient is more serious than it is for someone who is merely allergic or intolerant.  It would be good to know for that reason alone – then I could be diligent instead of careful.

I think.

I don’t know.  I go back and forth.

The main test counts the number of antibodies your body is producing against gluten.  In order to measure this, the patient must consume gluten and produce a reaction.  I am not willing to go through what I know will be a very uncomfortable (and possibly debilitating) few days in order to be told that I should never have consumed the gluten required for the test.  The test that does not require me to consume gluten is not covered by my insurance.

And why do I need an official diagnosis?  I mean, if the treatment will be the same as what I am doing now, why do I need the piece of paper?

Validation comes to mind.

Right now when I tell someone that I am gluten free, I get that look – eyebrows go up, head cocks a little to the side, bottom lip frowns a little.  They ask “why” with no words.  For some strange reason, I feel that I own them an explanation.  And in a way, I do.  I refuse the cookies/brownies/pie/casserole that they made as an act of affection.  I cause them extra work – getting a gluten free menu –  as they seat our party of four.  So I want them to know that I’m not doing this to be trendy.  I’m not doing this for attention.  I’m not doing this to open up a conversation about GMO.  I’m doing this because if I don’t, I won’t be able to leave my house for the rest of the day.  I want to say to them, “Believe me, I would LOVE not to have this restriction.  I would LOVE to be able to go anywhere at all at any time of day and get something to eat.  I would love to be able to plan a road trip without having to bring my own snack stash.”  But because I don’t have the blood work/biopsy results, I can only go with “It helped my arthritis.”

And you know what, I also just want to know that it’s not in my head – that I’m not making this up or creating my own symptoms.  I want someone in authority to tell me that I’m not being a flake and that it’s okay to ask a wait person to make another trip for a special menu.  I want someone official to say it’s okay to turn down the cobbler that a friend brought to work that she made with the apples from her own tree.

But until I decide to take that insurance un-approved test, I have one of the best endorsements of all.

At the end of his post, my brother wrote “I’ll never doubt you again, Sis.”  That makes me smile.


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