Monday, June 9, 2014

To My Family and Friends - A Letter and Guide from Your Celiac

Dear family and friends,

I just want to say sorry, now, ahead of time.

I'm genuinely sorry for the anxiety, frustration, annoyance, and confusion I'm going to cause you. I hate it.

I'm sorry for your time and money that I'm going to waste when I don't eat a gluten-free food you've prepared if it wasn't prepared to the standards I've been told to follow.

I apologize for the times I may be irritable, exhausted, or complain about feeling sick.

I apologize for all the times you're going to hear me say the word "gluten."

See, I have this disease. Celiac disease. It's an autoimmune disorder, and I'm going to have it for the rest of my life. When I eat gluten, my body attacks my small intestine, the nutritional gateway for my body. And when that happens, a whole slew of other things go wrong.

When I consume even a trace amount of gluten, invisible to the naked eye, I can experience any or all of the following:
  • Nausea
  • Bloating
  • Cramping
  • Sharp intestinal pains
  • Flatulence
  • Diarrhea
  • Constipation
  • Canker sores
  • Fatigue so heavy I could collapse
  • Lactose intolerance
  • Chicken bumps on the back of my arms
  • Acid problems in my stomach
  • Brain fog
  • Anxiety
  • Depression
  • Inability to concentrate
These symptoms could last for hours or for weeks.

I have been struggling with these symptoms for years now, some of them for as long as I can remember. You've probably been unaware of them most of the time because they had simply become a part of me. I had accepted them and tried not to complain as best I could. Some of them I'd almost failed to continue to notice. They had become my normal.

But now it's time to face them and deal with them. Now I know that when I'm experiencing these symptoms, not only am I struggling with the symptoms themselves, but there is a war going on in my body that can set me up for many health problems down the road.

I am now at risk for a whole bunch of other diseases, autoimmune disorders, and other symptoms of celiac disease that I have been fortunate enough to escape thus far.

This disease could also be responsible for my anxiety, my depression, my under eye circles, and my severe dry eye syndrome.

I know this is overwhelming to you. It is to me, too. I don't want to inconvenience you, I don't want to put a damper on our social times together. And I don't want to have this disease. I don't want to live life paranoid about a tiny protein, unable to eat the delicious foods that millions of others enjoy. It really honestly sucks. But it's the hand I've been dealt, and unfortunately it's the hand you've been dealt as my family or friend. So let's work through this together.

When I'm at your house and you're cooking for me, I may request the following, and I kindly ask that you please not get offended. If the below is all too much for you, and I 100% completely understand if it is, I have no problem bringing my own food or running to the store and picking some up. I have gotten used to not eating what everyone else is eating, and I really don't mind. So if you're feeling leery about serving me, just say so ahead of time. If you do want to take a go at it, here are some things I kindly request:
  • Pull out a new kitchen sponge and scrub any hand-washed items you're about to use to cook for me. Kitchen sponges hold gluten and hence your dishes that were previously cleaned by hand may have gluten still in them.
  • When you dry kitchen items that are going to be used to prepare food for me, use a new dish towel that has not touched other glutened kitchen items or glutened hands.
  • Whenever possible, use non-porous and non-scratching items for cooking. These are less likely to hold gluten from your previous cooking. This includes:
    • Metal mixing bowls instead of plastic
    • Metal kitchen utensils instead of plastic or wood
    • Glass cutting boards instead of wooden or plastic
    • Stainless steel pots and pans rather than non-stick.
  • If you touch gluten (such as pasta, bread, or a condiment that has gluten in it), please wash your hands before touching anything that will be used to cook for me.
  • Let me read every label. Even if you saw "gluten-free" on the package, please let me still read it. Some of these "gluten-free" items still say "May contain wheat" on them or something similar, and I simply can't take the risk.
  • Understand when I don't use a jarred condiment that has been previously used. Double-dipping into condiments leaves gluten in them and it can make me sick.
  • If you realize that something with gluten has touched something you are about to serve me, please be honest and say so and realize that I probably won't eat the item. Even a crumb falling into a bowl of veggies means that I can no longer eat any of those veggies.
  • Have separate serving spoons for each dish, and instruct other guests to not use switch spoons between dishes as it could lead to cross-contamination. If you are concerned about his happening, let me get my plate of food first.
  • With bags of gluten-free snacks such as chips, I cannot eat from the bag if a glutened hand has previously been in it. I can only eat from new bags of snacks or bags that have not had any hands in them.
  • Finally, please don't get too upset if I get sick. I get sick at home, too. This is a learning process for all of us, and gluten spreads so easily that it oftentimes feels like an impossible battle.
I love you all dearly and hate that this list of guidelines has to rule our meal times and snack times together. However, I wanted to write it out for you, to help you, because I'm sure that the thought of me coming to your house for food is enough to send you into an instant state of panic. Honestly, I'm not a fan of food time in general anymore. I kind of wish I didn't have to eat. But, alas, I do, and so I have to work around this. I'm taking it one day, one meal, at a time.

Thanks for your love, support, and understanding as we navigate this together. :)



  1. This is a wonderful letter. Thanks for sharing. I have had to say this many times over and it's not even been a year since diagnosis. I should link them your letter. ;)

  2. Thank you so much, Jamie! Please feel free to link them if it helps. :)

  3. Thanks for sharing this wonderful letter :)

  4. This is a beautiful letter! Thanks for sharing it! It made me cry to know that I should also write one. This is an awful disease.