Category: Celiac


What do we eat?

Someone asked me recently what exactly I eat now that my diet must be gluten free, msg free, and fake sugar free.  I laughed at first, the list of foods we eat is nearly endless.  The question has echoed over the last few days and I realized that a year and a half ago I was asking the very same question.  Now?  I can flip through a cook book and make nearly anything in it.  Sure, substitutions must be made.  We eat burgers sans buns most times, but I also know how to whip up a fantastic bun in a hurry when we desire one.   

I have, over the years, had to become more adaptable than I once was.  A few years ago, I ate the same basic rotation of a dozen or so foods at all times.  I ordered the same thing off of the menu if we went out.  It was rare that I chose to deviate.  Then I discovered celiac and it’s long assault on my body.  I realized just how malnourished I had been, despite the fact that I was never remotely underweight.  When the diagnosis came back of Osteopenia I knew that changing my lifestyle was the only answer.  So I began to work exercise into my life.  I still have not met my own goals, but we do manage far more than I ever did in my twenties.  I also wanted to give my body the best nutrition I could.   I eat things now I doubt I would have even tried five years ago.  Hummus has become a staple this summer.  Wild rice salads are fast becoming a favorite.  Our grocery list eat week consists almost entirely of produce and dairy.  I laugh when I open my refrigerator and instead of boxes/tubs/and bottles there is a predominate number of mason jars.  Mason jars filled with homemade dressings, homemade mayo, yogurt, whey from the yogurt (used in smoothies and baking), honey caramel creamer for our weekend coffee, and infused sugars to stir into the seltzer water when I just MUST have a soda – though compared to my old habits this is pretty rare.  Our freezers hold just as many mason jars.  Those are filled with smoothies (for the days I need a to-go meal), soups, stews, granola, and ingredients for baking.  There are also food savered bags of casseroles.  Whenever I make a casserole I try to make two or three.  One for that nights supper and one or two to freeze for later.  Doing that gives me the ability to take a weekend off from cooking now and then.  I try to keep that mentality whenever we are cooking.  If we are making burgers, why not get an extra pound and make some spares to freeze for later?  I find I feel much less controlled by my lack of ability to eat out of I have some easy pre-prepped meals on hand.  I also tend to make our meal plan/grocery list based off of what is on sale at Fry’s or Sprout’s.  So buying an extra pound of meat is good for the budget too.  

I know that I am blessed.  That man I fell head over heels for two years ago has learned to dance in the kitchen with me.  It wasn’t always easy.  I have been cooking for years.  His repertoire consisted of scrambled eggs, quesadilla, and grilling pre-formed frozen burgers.  He chose to invest in me, and us, by tolerating the taste tests I subjected him too.  Now, he can readily tell me if he wants more thyme or rosemary in a dish.  Two years ago he said “that’s the green stuff right?”.  I love that he was willing not only to have our house be entirely gluten free, but also willing to invest in what it requires to keep it that way.  Cooking everything from scratch.  He can even make the yogurt all on his own 🙂  I am blessed indeed!!

Holidays

I do not know how it happened, the quick passage of time that seems to have sped me from Halloween to New Year’s with scarcely time to blink.  I had so many plans to come here, to journal the success and failure of my first holiday season gluten free.  I wanted to write of the challenges of baking both gluten and dairy free.  I wanted to be able to say “just do this and you’ll be fine”.  I can still say that but the “do this” may be just a tad on the vague side since I never actually came here to write.  The laptop’s glow has filled my kitchen as I pulled up recipe after recipe being careful not to get floured hands near the keyboard.  It has not seen the quick paced tap of my fingers as they dance across keys making words come to life.  I meant to. I regret the lack of words and memories that will fade away but I can not regret the way I spent my time this holiday season.  There were long days and nights in the kitchen, yes.  There were also evenings in sis’s backyard with the fire pit and the smores – gluten free girl’s Oreos work fabulously for smores, though I still want to tackle her graham crackers one of these days.  There were movies cuddled up with my Sweetie and more family get togethers than I can count.  Time was spent well, even if it was not cataloged here.

This holiday season, it was one of learning curves.  It was a time of trial and error and learning to trust my gut instinct in my kitchen. (I’m still working on that one, but Sweet One’s learned my buttons well.  ‘I dare ya’ usually spurs me into action) It was a month of marathon baking sessions and learning to let the house get a bit cluttered in the process.  It was packing my freezer full, re-packing it in a failed attempt to jam more in, and a short drive to sisters house and her blessedly empty freezer.  It was standing in tears of frustration at my tiny kitchen, non-existent pantry and well stocked refrigerator only to laugh at the joy of working through it all with the man who managed to somehow keep up with the number of dishes I am capable of dirtying when I am in marathon mode.  It was multiple holiday meals at multiple family tables and sighs of contentment as we ate. It was putting bites of food into relatives mouths and watching their eyes explode with joy.  That’s the moment I lived for this busy season.  That’s the one that kept me going when the hour grew late and there was still a pile of recipes on the list for “tonight”. I had to learn all over again to make foods I have been making since my seventeenth year.  Then there were the foods I had never tried to make before and discovering the blessing of making things from scratch that I had always purchased in jars.  Those were beautiful lessons.

It’s nearly New Year’s now and I’m not sure just how that happened but I know that a few pounds of flour and more than a few pounds of butter disappeared along the way.  I know that the caramel apple cider I used to get at Starbucks tastes even better sipped at home to the steady beat of rain drops on the window with Sweet One at my side.  (The splash of rum? That was a dandy idea!).  Caramel is just not that hard to make, and the rewards are lovely.

This was not the way I meant to write it all, the wonders of this first gluten-free season.  It was not meant to be put here in one lump at the year’s end. Still, this is the option left to me and in my renewed spirit of “no regrets” I pulled out my crumpled up, liquid splashed recipes with the sharpie pen scrawled across them.  Here, are the things we enjoyed this holiday season and where applicable my slightly neater notes as to my own alterations to someone else’s creations.  I do not write my own recipes, I just mangle what others before me have done 🙂  So far, it’s working out splendidly for us and those we feed.
I’m going to skim right over Thanksgiving.  I was still unsure of what would work and what would not, so I did what I do best.  OVERKILL.  No, it was not necessary to make eighteen different things in two days time.  Almost all of it being both gf and df for the precious little girl who came to town.  There were cookies, granola bars, muffins, and pies.  There were rolls, and dressing, and cranberry sauce.   There was uncertainty and duplication and a very frantic me sending a very calm and wonderful him to the store when I ran out of ingredients.  And again when I ran out of ziplocs and foil.  Baking dairy free for a highly allergic five year old meant a lot of covering already  scoured clean baking sheets with foil.   (Note to self – buy more tapioca and corn starch than you can possibly imagine using.  You will use it.  Remember this next year.  Also, the store only stocks 2 boxes of sweet rice flour at a time.  Start hording it early.  Kiss that amazing man who buys you this flour regularly because he was told approximately six thousand time that this flour is the saving grace of all gf baked goods.  Remember to crank the music up and laugh lots, the most amazing memories are waiting to be made).  I found this chart and used it to convert all my non weight based recipes.  This was completely worth the time it took, the baked goods were reliably wonderful and I feel much more confident that I can duplicate those results.  Also, doubling recipes is far easier this way.   Eleven year old boys find kitchen scales fascinating 🙂  It is quite easy to convince them to “help” however it will take three times as much time as it takes to do it yourself.  The laughter and joy are worth the extra time, and the moment when he asked of his own accord “Aunt Ally is this flour a heavy one or a light one” and I realized he actually understood what we were doing . .  . completely priceless.  (and apparently  my version of skimming is rather long winded)
With that, we arrive at Christmas.
Christmas 1 –
  • Sweet Potato Appetizer – I made a double batch of these.  In between bites people begged for the recipe and requested I make them at every possible opportunity.  We liked them with feta but loved them with peppercorn chevre.
  • Cranberry Roast I doubled the sauce, using a homemade pureed cranberry sauce, and after cooking took the juices and whisked in  a cornstarch/water mixture until it thickened).  I leave out the raisins but that’s just because I hate them and since I’m the cook in the house I get to cater to me 🙂
  • Sweet Potato Mash – I just boil them and then mash them with greek yogurt and butter.  Gluten Free girl taught me to mash them by hand, and not until after they had cooled enough to not produce steam.
  • Artisan Bread (I used Gluten Free Girls “Crusty Bread” recipe out of her new cookbook, it NEVER fails to come out beautifully)
  • Salad
  • Chocolate Caramel Cheesecake – I used the Oreo cookies as the base of the crust and it was lovely.  However, it was much more lovely when I used good grade cocoa powder rather than the Hershey’s.  The Hershey’s batch was “okay”.  A quadruple batch of the “good cocoa” batch disappeared in less than a week.
  • Eggnog – Sweet One just about refuses to share this.  It really is “the best” egg nog ever.  Also, it doesn’t make me ill like the store-bought stuff.  The texture is far creamier without that sickening thickness that store-bought egg nog has.  We’ve made two batches and fought over them both times.  We don’t use nearly the amount of rum she calls for however 🙂
Christmas 2 –
  • Ham (purchased at Costco) with this glaze
  • Ham Gravy – This was made with the verbal instruction of two very . . . adamant women.  In the end it was the juice of the ham, a cornstarch/water thickener, and milk.  Proportions were based on their hollering demands advice.
  • Cornbread Sage Dressing – a family recipe I never seem to make the same way twice.  However, MUCH more chicken stock is required gf than “standard”.  Also, the addition of garlic and shallots was lovely.  Adding the herbs to the butter worked well to infuse a bit more flavor than mom’s.
  • Rolls – I use a slightly different combination of flours than written in the recipe.  Also, in my oven they required 9 minutes, I learned to pull them out just BEFORE they seemed done to me in order to retain the soft loveliness.  Over-baked is even worse in gf world than in regular baking.
  • Cranberry Sauce – I add the zest of 1/2 a lemon and then the juice from the same 1/2 lemon.  I add a bit of cinnamon and freshly grated nutmeg too.  Even cranberry sauce haters devoured it 🙂
  • Green Beans (thawed frozen green beans, sautéed in butter with garlic, thyme, marjoram – Sis had a recipe but only 1/2 the necessary ingredients.  Love ya sis.)
  • Cranberry Cheesecake with Oreo cookie crust – this makes a RIDICULOUS amount of cheesecake batter and was almost a disaster but it tasted sooooooo good.  I didn’t follow their cranberry sauce recipe, I was too lazy to make three different batches of cranberry sauce for two meals so I just used my standard with an extra dash of cinnamon and a splash of vanilla stirred in.  No one complained.
  • Mashed Potatoes (sis made them)
  • Sweet Potato Bake (sis baked it)
  • Deviled Eggs (which are the BEST reason to have a holiday – the calories in these babies don’t even count when they taste that good!  However, this too was sis’s recipe and since they are her specialty I won’t share that one here)
  • Apple Pie (sis’s and sadly not gf but I know she loves me anyway)

Some days . . .

There are days it seems as if the need to be gluten free has changed everything.  Days when the world seems harder and more complex than I have the stamina to tackle.  There are other days too.  Days filled with fresh foods, delightful pastas at serene little restaurants, or the joy of feeding friends foods they have never before consumed.  Those are the good days.   Those are the days I cling to when I struggle my way through the new aspects of my world.
This week that new world got more complicated.  I reacted, badly, to something but I was quite certain that there was no gluten in anything I had eaten.  I struggled to find the source.  I suspected Soy and began an internal panic at eliminating something so heavily infiltrated into our American diet.  It was a random conversation with my mother, an idle comment she made about how badly my brother reacts to MSG that led me down the path I’ve been on the last few days.  There were hours spent with Google.  Ah yes, that new pasta that tasted so heavenly – it has pea protein isolate, code for MSG.  That simple rice noodle bowl from Trader Joe’s I was so elated came gf, autolyzed yeast extract.  Yet another code for MSG.  My beloved coffee mate, who’s presence in my life has been significantly decreased because I knew it was doing “something”, it has MSG too.  Three days.  Three doses.  It took me under.  Three more days before I would know what it was that stole the life from my body.  One bowl of soy beans to make sure my assumption was not wrong.
Now the journey begins anew.  GF and MSG free.
Some days it seems as if I need a degree in chemistry, anatomy, and nutrition to make dinner at night.  I spent countless hours learning of lectins and proteins.  Pondering the importance of glutamate and learning which foods are naturally higher in this pesky substance.  I understand so little of it, yet I know I must understand more.  My body needs me to.
I struggle, knowing there are more pieces to this puzzle.  I fight the dizzy/nearly drunk feeling with the eyes that won’t quite focus right  for two hours after I eat and I still do not know why.  No gluten.  No MSG.  Still, something is getting me.  I made an appointment with an allergist only to learn the insurance won’t cover it and thousands of dollars of tests is not in the budget.  I am at a loss, doing the only thing I know to do.  Reading.  Tracking food intake, tracking weight, tracking sleep.  Watching the strange rash on my face come and go at seemingly random times, knowing there must be a dietary reason why.   Knowing that somewhere there are answers.  I just have to find them.
Some days, I’m just a little lost as to how to make my way through this journey.

I saw them standing there in the gf aisle of Sprout’s.  The sweet couple talking in hushed whispers looking terrified and trapped.  Quietly, I asked them if I could help them.   They stared for a moment at me, and then the wife flicked her eyes to the basket I was pushing laden with fresh foods and packages bearing the most prominent  gluten free names and logos.  I watched the struggle play across her face, and then she stuttered “Do you know what . . . ” and there she stopped.  The questions were too vast.  She didn’t know where to begin.  Her eyes filled with liquid frustration as she told me how horribly wrong her bread had gone.  Her husband, newly diagnosed, had eaten only one thing every meal for weeks.  He was tired of rice.  She didn’t know what else to make him.  She wanted to ask me “Do you know what he can eat”.

We walked through much of the store together, these strangers and I that late summer night.  My quick errand turned into an hour long adventure.

They have since found their way through this strange gluten free land.   I see them there, now and again, their cart is now full and their eyes no longer hold the terrorized glaze they did that first night.  We nod in acknowledgment, occasionally exchanging opinions on one product or another.  It makes my heart happy to see them there, and to know that my promise to her was true.   I assured her that  she would, in time, find her way in this new place.  Time.  It’s always the challenge.

When I first began this journey, the time factor frustrated me.  I knew that eventually I would figure it out.  I also knew that R&R was coming with alarming speed and since I only had 14 precious days with that man I loved in the span of 400 days, I was NOT going to get glutoned in that 14 day span.  I did the only thing I knew to do.

I researched.

I made a notebook and I put tabs in it.  I thought this new world might be easier if I could break it down, if I could walk in prepared.  I had one tab behind which I put a list of all the words I needed to watch for.  The obvious like wheat and the less obvious like malodextrin or “natural flavorings”.  There was a tab for manufacturer’s, a tab for Trader Joe’s who is kind enough to put out a monthly list of every gf item they carry, a tab for fast food with menus of allergens listed (and darn them usually the calorie count too!), a tab for restaurants near me, and a tab behind which I put a letter I found online regarding celiac that I could hand to wait staff or chefs.  I printed all those many pages I found online and put each page in it’s section.  When that was done, I felt like I was armored.  I was no longer at the mercy of this disease, I had drawn a boundary.  A boundary that stated “I will not live in fear, I will control this to the very best of my ability”.

I took that notebook with me to the store when I was purchasing groceries in those early days.  I don’t take it as often these days, but I do consult it when I make my grocery list and I note which brands are safe for me to consume right there on my list of needed groceries.  Always, I check labels.  Manufacturers change things so fast.  It has become rather automated now, flip the box/can/package over and seek those words.  My eyes find them faster now than they used to.  That first trip I read every list three or four times and then again when I got home still not sure I had caught everything.  Now, I trust myself more.  I know that I have trained me on what to look for.

Those fast food allergen lists saved me a few times when the employee had no idea what I was asking for.   In time, I stopped eating at those places.  They do not understand enough not to poison me, and words seem to have little bearing.

It gets easier, in time, but for now?  A few simple lists might help you find your way.

A lovely overview

A short (4 min) documentary on gf living.

http://www.generationglutenfree.com/index.php?page=home

Cross-contamination

I am lucky.   Living alone  made making my house safe is relatively simple.  It was one huge undertaking that first weekend that pretty much involved emptying the kitchen and putting every thing back piece by piece.  It was a lot of cleaning.  It was reading the labels on EVERYTHING that was in my fridge, freezer, and pantry.  It was googling the things I was not certain of.  It was bag after bag of food that had to leave.  It was daunting, but I did it once and I was done.  When Sweet One’s deployment is over, the kitchen won’t change.  He’s seen me sick too much to risk that so he’ll eat gluten free too.  I am lucky.

My sis lives just up the street.  She cleaned out a whole cabinet just for me.  It’s labeled the way all things sister are labeled.  A bright post-it written in sharpie.  Her fridge has containers with masking tape over the labels and my name scrawled over them.  The children know to stay out of those things, and they are becoming diligent label readers in their own right.  The youngest still looks for the word “gluten” but the older manages to think through at least the odds of gluten being in something with startling regularity.  I’m lucky.  When I mentioned getting in her pantry made me nervous with all the flour containers sitting there, she moved them.  Just for me.  Just so I could feel safe.  Their freezer has a whole shelf just for me where I store leftovers that can be heated for those visits we don’t plan in advance.  They accommodate me well.  They wash everything, twice, when I come over.  They scrub down the counters so I don’t accidentally get bread crumbs on my hands.  They love me well.

We had family dinner together one night gathering around the table with heaping plates of spaghetti.  Sis went to great lengths to make sure her homemade sauce was safe.  She made a double batch so I could have the leftovers.  We made quinoa pasta for me, strained it in a separate strainer, on a different side of the sink from where their pasta was drained.   I avoided the Parmesan, just in case.  We ate.  We chatted.  It was just like the old times, pre-celiac.  We laughed long and talked loud, just as we always do.  Until the pain started to creep up my neck, the hot spread over my skin, and the world got fuzzy.  I’m still not sure what gave me away.  The way I blink more trying to make words make sense in my head?  The rash that spreads around my mouth, across my forehead, and down my chest?  I tried to keep it hidden, but as Brother stood at the stove dishing himself seconds he said “You made your plate first?  Right?”  I felt the air change in the room.  I felt the weight of it settle on me.  I didn’t.  He mad the boys plates first.  The room froze and I met sis’s eyes.  She knew.

He had plated the kids spaghetti noodles and the grabbed a ladle full of sauce.  He used the ladle to carve out a crater in the noodles as he poured the sauce over the noodles.  He put the ladle back in the sauce pot.

That’s all it took.

Sweet One called me on Skype that night from the other side of the world.  He knew.  He told me as we spoke that he felt like he was watching me fade right out of me.  I laughed and retorted “that’s exactly how it feels”.  The headache starts at the top of my neck and arches over my skull.   It feels as if my eyes no longer fit in their sockets.  My skin feels wrong somehow.  The feeling you get in your jaw when you eat something super sour?  My whole body feels that way.  I lose the ability to find words and resort to the sentence structure of a three year old.  The dizzy hits and the nausea floods.  Bonine helps a bit.  The first dose of benadryl helps a bit if I take it fast enough.  Migraine meds are required before the four days of hell ends.  The worst part is that first hour though.  When I feel it start to spread, powerless to stop it and keenly aware of what is to come that is the worst part of it for me.

I am lucky.  It does not happen often.  Those that love me work hard to make sure that I am safe.  They help me cope when the gluten does hit.  That spaghetti night taught me something though.  The books all talk about cross-contamination.  I understood this in the abstract.  It became much more real when a ladle in a pot made me so ill. I learned to make my plate first.  I learned that even though the whole batch of sauce was safe – mine should still be in a totally separate pot.  My big brother will probably never forgive himself his oversight that night but me?  I’m grateful.  It taught me just how careful I have to be.  It taught me what the dangers of cross-contamination really are.

Yeah, I’m lucky alright.

Cast Iron Cleanse

I love cast iron.

I always have.

I think it’s a requirement for a girl with Southern roots.

I shed no tears over the diagnosis nor the learning curve required to survive.  I shed no tears over the bags of groceries that left my house, having been deemed poison.  I shed no tears over the grocery bill that first trip, nor the three hours it took me to gather the few ingredients that sat lonely in my rattly cart.  I took it all in stride, until I read that cast iron was virtually impossible to remove all traces of gluten from.  Suddenly, there were tears.  Cast iron is best aged and worn.  It’s meant to have a lifetime of stories attached.  The batches of fried chicken and chicken fried steak shared with friends should flood the memory banks when that pans weight is felt in your hand.  The cornbread baked to a golden brown perfection for the dressing at Thanksgiving should make you long for fall to arrive as you pull the pan from the cupboard.  Cast iron, it’s a sacred thing.

“I can’t lose the cast iron” I sobbed to Sweet One on the phone.  “Well get you a new one”, he assured me.  “NO, it has to be THIS ONE” I asserted with all the vehemence of an angry toddler.  “You’ll find a way.  You always do”, he replied.

It took me nearly a week of scouring the internet.  It took search after search before I found it, buried in a post about cleaning grill grates.  The protein that triggers the reactions breaks down at 600 degrees.  Self-cleaning cycles on ovens heat to 900 degrees.  Problem solved.

I might should have thought about the pie that had overflowed in the bottom of the oven before I tossed the skillet in with a prayer.  It might have saved me from the smoke alarms ringing out their warning at nearly midnight.  It might have saved me from the eyes rimmed in red from the smoke that filled the house.  It might have saved my pup from the panic attack those alarms sent him into.

It didn’t matter in the end though, my pan was safe.  A southern rooted girl needs her cast iron.

What I wish I could tell her

My mother is an only child.  There are times I resent that fact.  I long for closer ties with those who share my dna if only to grant the opportunity of exchanging information about the affects of those shared strands running through us.  There are not many left in this fractured family of mine, but there is one from this extended branch I maintain contact with.  My great Uncle.  I wrote to him and posed the question with bated breath.  Did he know?  If he did know, would he remember?  He belongs on my grandfather’s side of the family tree not my grandmother’s but the families were close.  They lived in a different era.  They did not rely on facebook or email to keep in contact.  They did not meet people from half way across the world.  They simply grew up, married someone from the town they’d been in forever, and lived life together.  I prayed that this time, that small town mentality would serve my purposes.  Were they close enough that medical data would have been shared and remembered?  There was only one option.  I typed the words and hit send before I could logic my way out.

The question was simple.  Did he know if my grandmother had celiac?  It’s hereditary you see, and though my body gives me all the anecdotal evidence I need, the engineer part of me inherited from my father wanted evidence.  The more I have read these last few weeks, the more convinced I became that my grandmother suffered all those years simply because of gluten.  I watch my mother’s body heal and I see her come, slowly, to life again.  She is more alive than I have seen her since I was a small girl.  There is joy and sorrow in that knowledge.  There is a wistful wishing for things that might have been, but it is quickly over-ridden with the reality that at least we have a different tomorrow than we once faced.  I am so grateful for that, for this opportunity to see her live in the ways that I always wished she could.  I understood, all too well, the affects continual pain has on a body.  At least, I thought I understood until the pain dissipated and then I realized that I never really understood just how much that pain affected me in the first place.  It’s odd, to realize that something has to end before it can be comprehended.  My normal, was not so normal after all.

He wrote me back today, that great uncle I have only seen a handful of times in my entire life.  Those small town ties?  I am grateful for them today.    He confirmed, she had ileitis and sprue.  Celiacs full name is celiac sprue.  My heart breaks for the woman who suffered so many years.  The solution was so simple all along.  It was not found in the myriad of rusty orange tinted pill bottles covering the shelf in the kitchen.  Instead it was on the shelf above, in those donuts he fetched every Sunday and the loaf of bread he bought every few days.  It was in the pantry and the refrigerator.  It was in those biscuits they made each weekend and in that bread she ate each morning.  It was in those frozen dinners she came to rely on in her later years.  It would have been so much less devastating to give up gluten than to live with the affects of eating it.  Was it that science understood so much less then? Was it the lack of  prevalence of gluten free options I find on the shelves of the local grocery stores that made her refuse this change in diet?  I’ll never know the reasons she chose to change her diet and then go back again despite the healing her body experienced in those gluten free months.  Sometimes the concept of a time machine makes sense to me. This is one of those times.  I want to go back and tell her “Please, stop eating gluten so you can live.  If you do, you can be the mother and grandmother we all long for you to be.  You can get out of bed, out of that dark cold bedroom where you reside, you can live if you simply don’t eat gluten”.  There are moments I realize that despite all the growing up a little girl remains in me.  That little girl is desperate to shout at the top of my lungs “Live, please live . . . I needed you”.
I will continue down this journey she gave up.  I will live the life I wish she had decided was worth living.  I will stand in the aisle of the local farmer’s market store and converse with the strangers staring at the bags of gluten free flours.  I will absorb more information and I will learn how to live this new life.  I will fill my notebooks with recipes.  I will answer my nephews precious question as I stare at his outreached palm as he asks “Is this gum poison to you”.  I will tear up a bit when my big brother washes his hands before touching food he’s making for me, and then washes them again and again as he switches from his skillet to mine.  I will nod in appreciate when my big sister doesn’t find it strange that I am completely paranoid about cross-contamination. I will answer the questions as they come and I will spend many hours on google seeking out gluten free options.  I will spend more hours in my kitchen making meals that help me live pain free.

The battle is worth it.  I wish I could tell my grandmother that.

Four Days

It was the sinus infection in early March that really made me question my body.  I understood why my face hurt, I understood the throbbing in my head.  Those things made sense to me. The intense migraines for days on end, the incredible vertigo that bound me to a wheel chair in the doctors office, and the way I could not even walk across the room unassisted did not make sense to me.  My patient sister with the natural nursing instinct kept me on a steady stream of medicine, toast, and crackers.  Day after day I got worse.  The doctor gave me a stronger antibiotic, and still I worsened.  It was not until I left the shelter of the sick bed she made for me on her couch and returned to my own walls and my own food that I began to heal again.  I didn’t understand then, the diet I had begun in interest of shedding pounds had limited amounts of gluten. Slowly I had begun to heal my intestines.  I had feared those crackers and that toast might add pounds back to my more slender frame.  I did not know at the time that the damage they were causing was far worse than a few added pounds.  They had triggered the intestinal response to gluten, and they were to blame for the vertigo and the migraines.  It was a week and a half I was so terribly ill.  It took only a few days of eating my unintentionally less glutenous food to heal.

The memory of that spurred me to try this gluten free diet.  It’s only been four days.  I should wait longer, before making the leap I am about to make.  I can’t though.  I know.

It may only be four days, but they are four glorious days.  Four days without one single head ache after having lived with them every day for over a decade tells me everything I need to know.  Four days of sleeping blissfully, even when I don’t drink a glass of wine tells me.  Four days of feeling like bouncing out of my skin with joy because I’m not exhausted tells me.  Four days of feeling lighter than I ever have, tells me everything that matters to me right now.
This is after FOUR DAYS.  Where will I be in four months, four years?  I joyfully anticipate what will be unwrapped in the days and months to come now that the gift of health can be restored to my body.

Hope was first a small light, calling me deeper into the pages of the web.  Now it floods brilliantly bright and I know something I did not know before.  I will not simply decay, my body failing more and more with each passing birthday.  I can do something about it, and I can live.  I can really live.  Not live “despite” but simply live.

A Reason?

I enjoy the process of gathering data.  It spurs my mind and gives me a longing thirst for more.  Today I went back to her archives for the third day in a row and gleefully ingested more words stopping every so often to cut and paste a recipe into Word and print it for my ever growing binder of culinary delights.  I’ve only worked my way through the first year of her posts.  It was there, buried five years deep I read this . . .

And for all of you reading who suffer with me on this. There are a lot of us out there. We aren’t just crazy.

My eyes fill with unexpected tears as the breath rushed out of my lungs.

There is a reason.

Could it really be?  Could there be a reason for the infertility that my file says was “unexplained”?  A reason for the constant pain, the never healing body?  A reason minor bruises last months and cuts last weeks?  A reason, other than the often blamed stress, that the constant headaches so often turn to blinding migraines?  A reason the anxiety hit so hard and so out of the blue?  While I’m certain hormones played a role, is it possible that hormones alone were not the only cause?  A reason that I could go days never remembering to eat a single bite of food.  No one ever understood that about me, but I was simply never hungry.

It would make everything fit.  This one piece, this one little fact would explain all of it.  Surgery often triggers celiac into an activity.  The hysterectomy that freed me from one sort of pain invited the continuing onslaught of another sort of pain.  Everything would tie together in such amazing ways.

For all these years I have heard the doctors mutter “too young”.  Too young for bones to be as they are, too young for infertility, too young for endometriosis, too young for osteochondritis dissecans, too young for the endo to be the worst case the surgeon had seen, too young for my teeth to decay the way they do, too young for Vitamin D levels so low.  Too young. I’ve heard it from doctors, nurses, nurse practioners, dentists, and dental assistants.  Every white lab coated person I have ever met has uttered those words. They were right.  I was too young.

I just wonder, was there a reason after all?