Gluten, Gluten Everywhere, but Not a Crumb to Eat

GF
ID: A lot of gluten-free products that my wonderful cousin Michele gifted us to help us on our gluten-free journey

Whew. I’ve been writing a book for the last two years now (off and on between everything that has happened to us and the world between August of 2016 and today). A large chunk of the writing is about what it has been like parenting with chronic illnesses. As I looked back on blog posts and diary entries and photo albums I have been reckoning with the idea that my youngest had inherited pretty severe anxiety from me. I wasn’t sure if it was the messaging he got when I was undiagnosed and very sick (that the world can be scary and unpredictable), or a unique set of genes that seem to have skipped my oldest. I blamed myself, often, for passing this on to him. I had stalled out on a chapter called “Inheritance” because I needed to make peace with my internalized ableism, with the idea that having my children become like me might be a curse. I have passed Lyme down to my oldest, but so far his immune system is keeping it in check. Lyme is awful, and I wouldn’t wish it on anyone much less my children who didn’t ask to be born. The harder part, though, is seeing some personality traits that had plagued and tortured me much of my life live on in them.

Especially with my youngest. I recognized the same reactions to failure that I had, the same reluctance to try something new or to try something new publicly. The same pressure to make creative endeavors perfect. I have a lot of blog posts about these moments with him. I have worked with myself so much to make sure I am not passing down an environment soaked in perfectionism. I’ve tried so hard practicing being kind to myself. I’ve tried to model taking chances that just ten years ago would have been completely unthinkable because it would have involved too much risk. But, just as with my illnesses, a purely cognitive, positive-messaging, psychological approach made only a small amount of difference. That difference was important, and necessary, and has made our family life a lot happier, but it didn’t change the underlying anxiety that was humming throughout our days.

Even though I gave up dairy six years ago based on a food diary and accompanying horrible symptoms, I never felt I had a problem with gluten. I swore up and down that the few times I gave up gluten felt worse that ingesting it. Until I got treatment for Lyme. And we tested my oldest for Lyme. And tested out an elimination diet for all of us this summer. Turns out a huge amount of my immovable fatigue was related to eating gluten. And my inability to regulate body temperature. And my neck and shoulder pain. But it was so obscured by all of the other horrible symptoms I was experiencing that I didn’t recognize it.

Turns out that the current of disabling anxiety electrifying my youngest’s brain starts when gluten in his system flips the switch. I don’t want to tell all the details right now, because it is hard to think about how often he must have felt so awful. Suffice it to say, when he eats gluten he becomes inconsolable. All those years of trying to comfort him through his worst times with a hug and the right words and not having them work became clear. There is only so much a hug can help when your brain feels like it is on fire. And until he had days without his brain being on fire he thought this was an inevitable part of who he was. He would tell me he hated himself. He can feel the difference now. He doesn’t hate himself any more. He does still hate how he feels when he is off, but he can separate that feeling from who he intrinsically is.

One morning recently he had cereal that was not officially gluten-free; it was made in a factory that also produces wheat cereals. Within fifteen minutes his eyes became glassy and he started to tell me his joints hurt and he didn’t want to go to school and just hugged me tighter and tighter. I had him take enzymes that can help break down gluten in case of accidental ingestion. Within another ten minutes his emotions righted themselves. It was scary and telling. There is no doubt in my mind that gluten has been hurting him for years.

This may also be inherited. It could be Celiac disease, an autoimmune disorder that can run in families with other autoimmune disorders like Hashimoto’s or Rheumatoid Arthritis. I could take a 23 and Me test to see if I carry genetic mutations for Celiac. As I go gluten-free some of my autoimmune conditions seem to be reversing, so it is possible that it isn’t just a sensitivity but a trigger for my body to keep damaging itself. My youngest has had lots of disparate and seemingly unrelated symptoms that also make sense in the context of Celiac, although he never had classic symptoms. I never had classic symptoms. If it hadn’t been for this experiment I may have never known. And as an Italian-American foodie, I might never have given up my carb-heavy lifestyle without this push. And my youngest inherited those sensibilities from me. He wants to have a cannoli food truck when he grows up. We’ve ordered some gluten-free cannoli shells online.

One article I read said that a child’s system may repair itself 3-6 months after adopting a gluten-free diet. All I know is that after about six weeks of a gluten-free diet my child’s sense of self-esteem and self-worth has improved a ton and a weight that was on my heart has been removed. He talks about his ideas so much more. Homework isn’t the same struggle, neither are chores or new hobbies.

My chapter called “Inheritance” isn’t stalled so much now as it is complicated by every new twist and turn, but somehow I don’t feel the same guilt as I once did. Quite possibly because my youngest isn’t suffering the same way he once was. Quite possibly because I’m not suffering the way I once was. The random nature of how the universe assigns predispositions and chance encounters in diverse environments and how that all comes together to create your life – I cannot take the blame for the whole universe. I can’t take blame for possibly being an asymptomatic Celiac sufferer born to family with a great-lasagna-making Italian grandmother. I can’t take the blame for not knowing I was bitten by a Lyme-carrying tick when I was six.

But I can take credit for every time now I try to make my youngest his favorite foods without gluten, and how I’ll tell him that this isn’t my most polished or logical essay, but I got writing done today and I am proud of myself for that, and all those years of hugs that didn’t solve him feeling horrible but at least let him know that we were there.

Summer Is Almost Over ?!?

 

Hostas
Image Description: a large amount of hosta plants with purple flowers on stalks

Holy crow it’s almost over, isn’t it?

What happened???

Every summer I vow that this summer will be more structured and balanced. I won’t forget to exercise. I will take all recommended supplements. We will go to the farmer’s market every Friday (so far we are one for eight on that). New hobbies will become habit. Writing will happen. But life doesn’t like it when I try to wrangle it into an organized march. Every week has been a different rhythm what with camps and vacation and lessons. So it goes with blog posts, too. I did not intend to write one today but noticed it had been a long while so here we are.

Here is some summer stuff that I haven’t gotten to properly process/reminisce about/think through and will run out of summer time before it happens:

  • I have nearly 200 pages of my book written. That is bananas. I still have about 20,000 more words to go. Even more bananas
  • The boys have done a chess camp and a stop-motion animation camp, swim lessons and have an archaeology-ish camp coming up next week.
  • We had my mom’s side of the family reunion in Kentucky and I got to be 100% myself for a full week because I was around A) people who know and love me in all my overly enthusiastic goofiness and B) locals who I may never see again. No masking required.
  • I survived a NASCAR race and a day a Six Flags in a heatwave.
  • I need to up my Lyme treatment again because while my heart rate was great on vacation, the stress of real life means my body isn’t coping as well as I’d like. I don’t really want to up my supplements because it means I lose some of my day.
  • We’ve taken the boys off of dyes and preservatives with good results. We’ve taken me off of gluten with the result that I feel a bunch better, but I complain a lot more about what I can’t have.
  • Our new house has so many flowering plants that I didn’t realize. Every week something new is exploding and while I’ve tried to keep track I am finding it impossible.
  •  The outside of the house renovations are FINALLY DONE!!! Thank goodness.
  • We saw Incredibles 2.
  • We just went to an outdoor concert where the band Classical Blast played The Cranberries’s Zombie as a symphony would, and I just about died from 90’s nostalgia happiness.
  • We have plans to make some pineapple sage lemonade this weekend.
  • I have an adorable Modcloth dress that I need to wear out somewhere, but we haven’t had a chance to go out.
  • We don’t know, still, which school the boys will attend in the fall. We might not know until the week before school. That is not helping my (or the kids’) anxiety levels.
  • I got to hear Len’s Steal My Sunshine.
  • I realized that I have a lot of symptoms of both Autism and ADHD that overlap-and that ADHD strategies are helping me figure out how to make my life work.

 

There is a ton I could unpack about any of these-really! I can think of a mini-essay for all of these, but alas time is fleeting and I need to go make lunch, add 500 words to a chapter about How to Train Your Dragon and disability rep, get some groceries, remember to put our bin of batteries by the door so I remember to take them to recycling, learn how to write a book proposal, submit a story, learn about how people with ADHD have very little concept of how much time tasks take, sew a pillow with Christopher, try not to obsess over how young I looked on the day of the 2016 election and how I’ve aged ten years in the last 18 months…the usual.

Just checking in, hopefully I can get something more coherent to you soon!

Kristin

 

Essay at Rooted in Rights

 

Garden Lites
Image Description: A box of Garden Lites Chocolate Muffins that are dairy-free and gluten-free

 

Hi Everyone!

I have a sort of unusual essay/article out today at Rooted in Rights, a disability advocacy group. It is called As a Chronically Ill Mom, Even Tater Tots Are a Way to Show My Kids Love . It’s about being a mom, food being love, preservatives, the Standard American Diet and convenience foods, and it’s part of the conversation around Mother’s Day about what it means to be a disabled mama. I hit a lot of topics in 1000 words!

Hope you are all having a great Mother’s Day weekend!

Love,

Kristin

 

Thanksgiving 2017

We are currently in the middle of renovations on our new house and aren’t living there yet. As of this writing this is what my kitchen looks like.

Kitchen a mess
Image Description: A kitchen cluttered with renovation debris and drywall dust 

Countertops are covered in sawdust, there are trim pieces and a table saw in my living room and bag chairs in the family room. We need to set up Wi-Fi and cable, and do not have any toilets upstairs. Our kitchen table, sofa and entertainment center are still in a storage unit.

We are less than a week from Thanksgiving and my ridiculousness has insisted that I still want to host Thanksgiving. It’s been our thing for years and years. Since graduating from college my husband and I have hosted a Thanksgiving dinner every year. We made pasta and turkey for just the two of us in Tennessee, and the next year there my brother-in-law came and visited. We’ve had my mother- and father-in-law over in Texas when our oldest was just three weeks old (though I did very little cooking that year). The ten years we’ve been back in Illinois we have added in my brothers and significant others, my parents, friends that became family and aunts and uncles and cousins. Like, it’s a whole thing. I have a collection of recipes and timetables and serving platters and autumn leaf-colored plates and a stuffed turkey and gold and brown tablecloths and a Tiffany-style pumpkin lamp. Like, it is on. This is happening.

My mom has teased me that this really isn’t necessary. My husband stared at me with wide eyes this morning, one of the few times in our twenty-one years together that he has admitted we probably have bitten off more than we can chew. My youngest was sad that every year we decorate a cardboard box that we then fill for the food pantry and that we might not get to this year-I told him we have a million moving boxes and I just grabbed some construction paper from Target. I’ve got Hawaiian rolls in my pantry, a pound and a half a pecans in the freezer, cranberries in the fridge.

My deviled egg plate, immersion blender and portable cupcake holder are out of storage. The big ass square stuffing bowl is ready.

Square Bowl
Image Description: Large white serving dishes on a windowsill overlooking trees

This may be the most ill-advised Thanksgiving we have ever held. But, this is one of the ways I show my gratitude for some of the people I love, and who have been there through this whirlwind process.

Let’s go.

Thanksgiving Table
Image Description: A table set for Thanksgiving with red and orange plates, a vase of autumnal flowers, gourds and leaves. This is last year’s set up

Happy Irish-Italian-American Day!

irish-Italian
[Picture of red tomatoes and a box of spaghetti above. Picture of shamrock and plaque that read “Home is where your story begins” surrounded by Celtic knots below]

I am half Irish-American and half Italian-American, more or less, give or take. On the Irish side there are a few Scottish and French ancestors, and on the Italian side we are more accurately Sicilian. This is a fairly common background for people who live near Chicago, Boston, or New York, as both of these European immigrant groups settled in these cities in large numbers. I get that it isn’t very common in the rest of the country – when I lived in Tennessee and Texas I was hard-pressed to find anyone who was either Irish-American or Italian-American, much less both.

Chicago, however, is city that dyes its river green every St. Patrick’s Day and has a bag-pipe filled parade. It is also a city that celebrates St. Joseph’s Day on March 19th with groaning tables of Italian food and the color red. Patrick is the patron saint of Ireland, Joseph the patron saint of Italy. It stands to reason, that in the Chicagoland area March 18th should be Irish-Italian-American Day. You know, split the difference and celebrate the best of both cultures.

My brother and I went back and forth on suggestions. Maybe of viewing of Brooklyn or Return to Me (apparently there is an Irish-Italian restaurant). I can’t remember if it is A Bronx Tale or Goodfellas that features characters who cannot be full mafiasos because they are part Irish-but I’m thinking I’m tired of Italian heritage being reduced to the mob. Maybe I’ll watch the beautifully animated Song of the Sea again.

My general feeling is that I would be best served eating Italian (and Italian-American) food while listening to Irish (and Irish-American) music. Gnocchi, lasagna, caprese salad, tiramisu, cannoli, lemon knot cookies, pizzelle, agli olio, espresso, eggplant parmesean, stuffed artichokes, pasta fagioli. Gaelic Storm, the Cheiftains, Van Morrison, Flogging Molly, U2.

The reverse would be all right too, if perhaps a tad less illustrious. I really do love a good stew, potatoes are always a favorite, and my oldest kid even likes cabbage. I can appreciate opera (Nessun Dorma sung by Pavarotti is heaven) and Frank Sinatra will always have my heart.

I could binge read, James Joyce and Dante, William Butler Yeats and Petrarch.

Check out the artwork of the Book of Kells, and the Renaissance.

Drink beer or wine.

And both places are beautiful.

You know, it is almost as if there is no wrong way to celebrate.

So for everyone out there who has both Irish and Italian heritage in America, in between Shamrock Shakes and sweets tables, there is one day that could celebrate both. Let’s do it!

Happy March 18th, everybody!

In a Land of Twelve Kinds of Cupcakes…

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For my younger son’s seventh birthday we had an experimental bake-off as one of his presents.  He is always coming up with flavor combinations he wants to try, be it a lemon peanut butter cup (which was actually amazing) to an apple orange soymilk smoothie (a lot less amazing). He has wanted to experiment with cupcake flavors forever, so when he got home from school we had a whole table of ingredients and sprinkles and frosting ready to mess around with. We whipped up basic vanilla and chocolate batter and set out all of our extracts (vanilla, almond, peppermint, orange, lemon, coconut and anise) all of the fruit in the house, nuts and candies and toffee bits and chocolate chips and marshmallows and food coloring and Teddy Grahams.

He was beside himself. The four of us, him, me, my husband and my older son would make three different experimental flavors each, and we started plotting and planning and dicing and mixing. In no particular order we ended up with…

  • Peanut butter-banana-chocolate with chocolate frosting
  • Lemon-banana-vanilla with yellow lemon-vanilla frosting
  • Maple-pecan-vanilla with cream cheese frosting
  • Chocolate-marshmallow with chocolate frosting and Teddy Grahams
  • Peppermint-chocolate-sprinkles with chocolate frosting and holiday sprinkles
  • Vanilla-strawberry with vanilla frosting and red sprinkles
  • Chocolate-Rice Krispies with purple-tinted vanilla frosting
  • Orange-chocolate-chocolate chip with orange-tinted vanilla frosting
  • Vanilla-almond-cherry jelly bean with pink-tinted vanilla frosting and a red jelly bean
  • Lemon zest-chocolate chip-vanilla with orange-tinted vanilla frosting
  • Vanilla-orange-pine nut-freeze dried strawberry with orange marmalade vanilla frosting
  • Classic chocolate with teal-tinted peppermint vanilla frosting and pastel sprinkles

The cupcake production was going full tilt…until it came grinding to a halt. In the midst of us all being excited about trying our cupcakes out for dessert that night, my husband casually mentioned that we could have friends and family test them out the next day at the huge family birthday in our little guy’s honor. That stopped him dead in his tracks. He suddenly refused to do any more – even though he had only come up with two of his three designs. Even though he had been so bouncy before. Even though the only reason we had to come up with this idea was that we knew it would make him extravagantly happy. He stopped.

We should have known. Our seven-year-old is terrified of other people’s reactions to his creative work. He has been known to throw Lego creations when they don’t work out, or to literally not move once he feels he is being watched too closely. He dances joyfully at home and messes around with a guitar, but the thought of taking lessons for either paralyzes his fun.

He sat angry on the couch as first I tried to coax out of him what was wrong, then his father took a turn. Eventually my husband was able to get him to admit that he was worried other people might hate his cupcakes. We first reassured him that people would love them, and if they didn’t it would be okay. When that was met with a skeptic scowl, we then reassured him that only our little family of four would ever taste them if that would make him happiest. My husband got him to design his last cupcake-the classic chocolate one with the elaborate topping.

 

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He is my child, for sure.

I am the one who procrastinated on writing papers until the last moment because if they turned out badly I could blame it on the time crunch. I am the one who was given an opportunity to write the introduction to an online curriculum series in college and turned it down because it made me too nervous. I am the one who decided I would rather be “well-rounded” than put all my energy into ballet. I am the one who got solos, but would then show up to voice lessons and even competitions woefully underprepared. I am the one who refused to let anyone coach me on my monologue audition I would perform just once for over twenty colleges’ theater departments.

Sometimes my fears honed my actual work into a fine point – my almost late papers taught me how to get an “A” even with limited time by using my (not-often-used) laser focus, my monologue got me admission into ten different theater departments. But then I kept shooting myself in the foot. I didn’t go into theater for fear of a lifetime of rejections. I don’t dance or sing anymore except in my own kitchen. I still write though, and I am trying for my youngest to show him that putting your creative work out there in the world is incredibly difficult, especially for him and for me, but that it really is the only way to be happy. It is the only way to be true to yourself, to be honest with who you are and what you bring to the world – putting your work out there for other people to see.

The beauty of living in a land with twelve kinds of cupcake is that you haven’t put all your hopes and dreams into just one cupcake. When you make just one, you are scared of your aunt who doesn’t care for chocolate, worried about the cousin who is allergic to nuts, terrified that another cousin will think it is too boring or that your grandpa with think it too crazy or that your grandma will say she likes it even if she really doesn’t.  When you have twelve different kinds of cupcakes, twelve experiments of flavor and texture and color it is okay that the jelly beans fell out of the bottom of one but left a delicate delicious flavor. It is okay that the peanut butter banana was too dense, it’s a great surprise that lemon and banana together is light and airy. It is more than okay to make a classic chocolate cupcake perfectly simple and beautiful decorated.

I am trying to take my own lesson from this. Right now I am grateful I am letting myself send so many cupcakes into the world, because I am less worried about each one being perfect.

I have, out there in submission-land and in no particular order…

  • A very short piece about school shooting fears
  • A very long piece about a hurricane evacuation while I taught high school
  • A medium piece about being mistreated as a patient with chronic illness
  • A rewrite of a blog piece about speech delays, open heart surgery and one-syllable words
  • A rejected piece about science fairs and art that turned into a blog post

And

  • An accepted piece about baby food, insecurity and watermelon

 

Eventually, in the sixth hour of his family party, our youngest let other people try out his cupcakes, once the big cake had been served, once the numbers of guests dwindled and he felt happy and content and comfortable with sharing his creativity. I think it went well, and I hope both he and I remember that while sharing can be scary, there are tricks to make it less so. And, ultimately, even if you are temporarily paralyzed with fear, moving forward anyways is worth it.

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Essay at Mamanomnom.com

Ripe Watermelon

 

Hi! I have an essay published today at mamanomnom.com called Watermelon Mush.  It is about feeling inadequate as a new mom and how that DOES NOT lead to culinary greatness.  I’m excited to be a part of this new food writing offshoot of Mamalode, to combine culinary and parenting writing in one place. If you know me you know I love my kids and I love my food, so this is a perfect fit!

Hope you can check it out!

Love,

Kristin