Friday, November 11, 2016

I've had a long, hard journey to get where I am now.  And I know there is a long journey left to come.  There is comfort in the fact that I'm not in it for a destination.  I'm no longer sure where, exactly, my journey intends to take me.  But I'm grateful for the experience along the way.

On this journey, I've met many individuals who are following a similar path.  They may have set out with different intentions, or had a different destination in mind than I did, but nonetheless we find ourselves following a somewhat similar path of learning and dietary adaptions and discoveries.  Symptoms overlap, research correlates to other research, experiences and diet may differ somewhat but the overall journey remains very similar.  

Dietary changes are hard.  Even harder is the learning process, learning not just to rethink what you eat but to reevaluate the entire learning process that got you to this point in life.  What you eat isn't something to take for granted.  There are so many variables in our diet, from pesticides to genetically modified organisms to preservatives to artificial flavors and colors.  Some are likely perfectly safe in small amounts, but our diets contain so many small amounts that the amount we ingest is no longer negligible.  Others are safe for some but may trigger problems for others.  And while there is limited research that helps us begin to understand what's going on, the far reaching implications are still hard to comprehend.  

Hey, I've been at this for over a decade and I'm still struggling to grasp the enormity of it all.  

What I haven't talked about in a long time is the very real danger of over compensating.  
I recently found myself engaged in conversation with another journey-taker.  Her daughter has been very sick, finally able to participate in life again after being bedridden for several months.  After giving up on western medecine, they discovered some food intolerances and an allergy to pesticides.  The trouble comes in over compensation.  While I have no doubt that the food issues are making a big difference, they are still looking for things to eliminate.  
The trouble is, you can't stop eating.  And a very limited diet is no help to anyone.  I know, I've been there.  It's so easy to do, especially as a parent who has kids that depend on me; and limited support (due solely to a limited understanding in how chronic digestive issues work rather than lack of care) I am constantly battling the temptation to stop eating.  So I get it.  
But I listened to the hoops she has jumped through, and watched her bristle as I gently suggested some less-herculean efforts that might yield a similar response.  So I bit my tongue as she described the emotional isolation and their solution (which sounds just as nasty as the original symptoms, involving a variety of detoxifying herbs and recovery systems after indulging in forbidden foods.)  And then she started listing more diets that they are slowly adding to the original, proudly increasing their limitations while increasing supplements to make up for what is being removed...
I had to say something.  And I had to share.  
Just because food is a trigger, dos NOT mean it is inherently evil.  
Gluten is bad for me.  What it does to one kid is flat out evil.  But in itself, it's just a grain.  

I don't believe that there is one diet that works for everyone.  I don't believe that natural foods that have been used by native cultures for generations are inherently bad for everyone.  And I believe that this truth is universal.  Different people have different needs, and while various diets work well for broad spectrums of individuals, it's only because their individual needs happen to overlap.  

That's right.  While I may think that the American diet has a surplus of wheat grains in it, I don't believe we should ban wheat.  And while I am concerned about any monocrop (especially corn); I also don't think we should ban it.  Any monocrop is dangerous.  And there are people who can't tolerate wheat, or rice, but might do okay with corn.  Everything in moderation.  

A healthy diet is a varied diet.  If you are still having symptoms after eliminating one food, please, please, please don't go overboard by eliminating every other food you think might possibly be suspect.  Listening to this one particular case, I couldn't help but wonder if they'd tried a moderate route.  Just give up the gluten and stick to organics for 6 months.  6 months is a very long time in the life of a 10 year old.  But it takes a very long time to heal from malnutrition caused by food intolerance.  It takes a very long time to heal both physically and emotionally from long term digestive problems.

I understand the desire, the desperate desire that borders on need, to feel healthy.  But total elimination for life is not a good answer.  Elimination diets work by eliminating the suspect foods, and then slowly reintroducing them while watching for symptoms.  It's a challenge as a parent because a) you want to be available and dependable to kids and b) you don't want your kids to suffer. Life goes on, and when kids are young it goes very, very fast.  There isn't always a tomorrow because by tomorrow, your kids may have moved on.  But patience is still key.  Give the gluten free (or corn free, or dairy free, or all organic) diet a chance to work before choosing another restriction to add to that one.  Consider carefully re-introducing eliminated foods if you don't get the results you were looking for.  There is no one size fits all diet.  There is no magic cure.  It took time to get this miserable, it's going to take time to heal and relearn what "normal" looks like.

Most of all, it takes a long time to rebuild trust with food.  It's something that is supposed to nourish us, but when it bites back, it's hard to risk eating again.  It's still essential.  

Tuesday, November 08, 2016

Recently, an author I follow posted a lovely infographic (which I don't know how to snip and share appropriately) about how small amounts of allergen can be fatal.  She mentioned living in fear of something so small taking your life.

The thing is, I don't want to live in fear.  Knowledge is power, and fear is sort of an anti-power.  It's a weapon used against the masses, and it's getting out of hand.

Yes, I have allergies.  And yes, a very small amount of allergen can make me miserable.  And yes, I've had breathing issues and I've been told anaphylaxis may be an issue.  But does that mean I have to live in fear?

I could.  I could bury myself in my room, and never leave.  I could stop eating anything that didn't come from my garden.  I could let it escalate, and grow, until I was paralyzed.  It would be an easy thing to do.

But you know what I do instead, even though it's hard?  I go to the store, week after week, and trust companies not to change ingredients without telling me.  I visit people's houses, sometimes in a mask, and hoping they don't react poorly.  Trusting them not to have just popped popcorn or used cornstarch or overused cleaning supplies.  Eating, in general, is hard.

But I do it.  A lot of people I know do the same thing.  Throwing themselves out there, trusting food.  Sometimes successfully, sometimes not.  The more "nots" that we have, the harder it gets but we persevere.

Because what else are you going to do?  You need calories, and growing them all ourselves isn't an option.  It seems silly to those who have never had reason to mistrust food.  But after being burned repeatedly, it takes someone strong to keep going out there and trying.  That's why we need transparency in labeling.  That's why we need clear food labels that tell us what we're buying, how it was grown, and clear answers about packaging (Which can be dusted with cornstarch, for those not in the know).

We can't eliminate all allergens.  But we can make all allergens easier to live with.  

Wednesday, November 02, 2016

More than a label

We like labels.
Labels help us to understand individuals.  They help us to understand ourselves, to get the help we need and are instrumental in getting the accommodations needed for school or life.  Labels can be a good thing, but we often go a step too far.
Labels are only post it notes, they help us to understand our differences but they don't, and should never be expected to, define us.
I experience food allergies and chronic digestive symptoms.  I am not my symptoms, nor my restrictions.
However, I find that I feel like I am of less value to society because of my unique situation.  And, as I talk to others in similar situations, I discover that they also feel inferior due to their restrictions.  Inexplicably, we also at times feel like martyrs because despite our symptoms life must go on.  So we shower, take whatever symptom limiting medication we can tolerate, and put on our masks.  Public faces, with forced smiles (carefully practiced to appear natural), and borrowed energy.  We box up our symptoms the best that we can and pretend to be normal.
Until we can't.
And then we need to own up to our symptoms, our labels.  And then we become filed away under "potential liability," or "weird" or "crazy".
We can't access the world in the same way as others.  And our labels can either enable or entrap us.  Ironic isn't it?