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IT’S PERSONAL

The month of May is National Celiac Awareness month.

And while I could rattle off the numbers of people who have Celiac or some form of wheat intolerance or allergy, I’m going to share some of our family’s story instead. Why? For me, it’s personal; it hits deeply and closely to home. I have celiac, and so does my sister, so it doesn’t get more personal than this.

My youngest sister was diagnosed with Celiac disease at a time when virtually no one knew what Celiac was; she had been quite ill, anemic even after several blood transfusions. When her doctor admitted her to the hospital, a biopsy confirmed the Celiac diagnosis. Our other sister, a nurse, began researching to help the rest of us wrap our heads around the disease and what it meant – and what it meant initially was no wheat. But none of us really understood the long-term ramifications of Celiac and how it affects the body. Common sense said to avoid wheat, and we assumed everything would be fine. Except that is wasn’t. And it isn’t.

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Even though she has been gluten-free for several years now, she’s had enough blood transfusions to blow out the veins in both of her arms. When doctors realized they could no longer place an IV, a permanent port was placed in the upper part of her chest so that she could continue to be transfused regularly.

Over the years, the effects of Celiac has continued to not-so-silently eat away at her body. Last October she began to experience severe, intermittent abdominal pain – a few days here, a few days there. She couldn’t eat; she couldn’t keep anything down. She knew something was wrong and discussed it with her doctor, and that began the journey we now find ourselves on today. Blood work, ultrasounds, CAT scans, PET scans, upper and lower GI scopes, enlarged lymph, elevated levels of something I cannot even pronounce, tumors in the gut, emergency trips to the hospital, severe and unrelenting pain. And still, she hasn’t been able to eat since last October. She has lived on coconut water, bone broth, and kombucha — maybe a bite of mashed potato here and there, but nothing stays down.

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The doctor who performed the upper and lower GI scopes told her she didn’t have Celiac and that she should start eating gluten – yet he hadn’t bothered to look at her chart. When she pushed him about the weight loss (which at that point was about 50 pounds), his response was that ‘she could stand to lose a few pounds.’ And here’s where I swear so feel free to skip ahead to the next paragraph. Asshole. He’s an asshole and shouldn’t be practicing medicine. It’s now the end of May. She’s in constant, severe pain, and nearly bedridden, she’s lost more than 100 pounds. This week includes a consult with a surgeon to schedule exploratory surgery and hopefully get enough tissue to biopsy the tumors in her gut. I’m scared.

Why am I telling you this?

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Because it’s National Celiac Awareness Month, and ever since my sister was diagnosed, it’s been a fight for her survival.

Look, I understand that we all make our own choices to eat what we want, but consider this: if you’re eating gluten-free as a way to diet, I want you to reflect on my words and look at the photos of my sister. If you’re following a gluten-free diet because it’s the latest fad, please reflect on my words and look at the photos of my sister. If you have been told to eliminate wheat from your diet and you ‘cheat just a little, cheat every now and then, cheat only when you are out in public’ or think ‘yes, I can’t eat wheat – but tonight I’m going to eat whatever I want,’ then please, read my words again and look at the photos of my sister.

And if you’re eating gluten-free, then understand what that means. Get tested. Do your homework. If you don’t need to be gluten-free but choose to because it makes you feel better – you have a right to make that choice. But keep in mind that when you announce at a restaurant that you’re gluten-free but then order a piece of chocolate cake or a doughnut or a plateful of gluten for dessert, the waitstaff in some restaurants won’t take people like my sister and me seriously. And if you’re cavalier about being gluten-free around friends and family who aren’t educated about gluten or Celiac, the same holds true – it sends the message that Celiac is a whim, a fad, not real.

I’m praying you remember this post, you remember these photos, you remember the face of my sister. Instead of giggling at the ignorance of a handful of people on a late-night comedian’s video-clip who know nothing about gluten or Celiac, keep in mind just how serious this is.

Because I’m afraid. I’m afraid she won’t be here next year. I’m afraid her children will lose their mother. I’m afraid I’m going to lose my beautiful, funny, vivacious sister.

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I’m not laughing, I’m crying.

It’s personal. And by sharing my sister’s story, our story, I’m hoping it becomes personal for you too.

22 replies on “IT’S PERSONAL”

[…] Debra Smith is one of the two voices and talents behind SmithBites, a food blog based in Indiana. She has been gluten-free for medical reasons for three years and is learning all the time how to adapt her old favorites to fit in her new way of eating. Her sister also has both Celiac disease and Crohn’s disease, so the need to provide truly delicious, nourishing gluten-free food is of utmost importance. […]

Oh Debra, so well said. Your love for your sister shines through. And to anyone who has ever encountered an ignorant (and unfeeling) medical professional, your swearing will astound only in its mildness. Makes me think of a quote from Black Beauty:
“Only ignorance! only ignorance! how can you talk about only ignorance? Don’t you know that it is the worst thing in the world, next to wickedness?—and which does the most mischief heaven only knows.”
Thanks for doing your part in raising awareness, so that ignorance of Celiac can be stamped out!
Sending lots of positive, healing energy.

I met Sharon through FB. Thank you for putting this information out for other’s to read. I had no idea that this is such a devastating disease. I’m praying for all of you. She is such a Wonder person who has a beautiful life finally and it is tearing me apart for this diease to be destroying her.

While I don’t have any experience with Celiac or gluten intolerance, I’m so thankful to read this because it truly helps the rest of us not only empathize, but understand. Sending up prayers for your sister, and sharing this with others so their eyes can be opened as well.

Tearful as I read this. It’s just been a very emotional and most of the time helpless feeling as we have watched Shari deteriorate without any solution that gives her relief from agonizing pain. She has been diligent in following a gluten free diet but still faces a very uncertain future. My hopes and prayers are that her surgery next Thursday will give her some answers and a course that can lead her to a pain free life.

I am crying with you. Thank you so much for sharing this Deb. You are amazing and I really hope the doctors with figure out what is going on and your sister can begin to heal. Sending over really big hugs. XO

It has been distressing to read headlines of late that suggest wheat / gluten intolerance does not exist. It only stands to muddy the already murky understanding of celiac disease (including, apparently, among some [A..H] doctors). After too long contemplating, I was tested and thankfully, the test was negative. I hope more people heed your advice and get themselves tested, if they think gluten may be an issue for them. I am looking at your sister’s (lovely) face and sending warm, healing vibes.

And THIS is exactly why I hate the whole trendy gluten free thing. I love that there are more options out there for people like you and my other friends who are celiac or gluten sensitive, but it DRIVES me crazy when someone makes a big deal about being gluten free…then eats a slice of cake (made with wheat flour) or picks the croutons off a salad because they “cheat” a bit. Gah! I hope your sister finds an understanding doctor that can help her. My thoughts are with you and your sister! #hugs

Oh Deb. This gave me chills and tears to read. I am forwarding this on to 2 of my local Celiac friends who are suffering through getting people to understand right now. Including one of their doctors. Thank you for sharing your family story (and a yummy recipe)~
Heather

What a beautiful story. Your sister and your family are so brave. Thanks for candidly putting this out there for everyone to be more aware of celiac’s. My prayers and wishes that your sis will be okay. Love the recipe. Thanks for sharing, Debra. Hugs 🙂

This is such a powerful message. I am keeping my fingers crossed for your sister and your family and I hope that she will be a part of your life for many, many years. My youngest daughter has Type 1 diabetes, and therefore has a great risk of developing celiac disease. Every time she sees her endocrinologist, my heart skips a beat or two:( Hang in there, my friend! XOXO

Thank you for sharing this very important message Debra. When I look at the picture above and see someone who is a special part of my life that I love so much, your other sister, Vicki, it even brings the point home even more poignantly. This could be any of our sisters or daughters, or, family members too and the facts as you share them should be brought forth with more light. I hope and pray for the recovery and comfort of your sister that she may regain strength, and resume her role, particularly as a mother as soon as possible. Thank you for sharing this important food issue of today!

Oh, Debra. Thank you so much for sharing your sister’s story here. It’s such a powerful story, and one that I hope has a good ending (and quick!). Know that my thoughts and prayers are with you and your family.

ps – I hope she fired that doctor.

Sending lots of good energy to your sister, Debra. Your words are as clear as they can be. A disease is a disease and Celiac disease is a serious one, which should not lumped with anything else and not confused with lifestyle choices. I hope having a National Awareness Month will help the public understand better the seriousness of the condition.

Oh, Debra… I’m so sorry! Thank you for sharing your story so beautifully. There is so much confusion out there regarding celiac and living gluten-free, and it’s a shame that people don’t take the time to educate themselves before forming an opinion. I will keep your sister in my thoughts and prayers (and you, too!).

Sending hopeful thoughts and prayers that the exploratory surgery will be the beginnings of better health and recovery for your sister. Very personal and very powerful messages here regarding Celiac Disease and yes, for those who do suffer from it there needs to be a more supportive and informed community around them. Less asshole doctors like the one your sister unfortunately had to deal with and more educated and empathetic ones.

thanks so much Paula; i will say that for the most part, i do feel supported; but i also feel there is a lack of education that makes Celiac an easy target. as to the medical community, there are great doctors out there who make this their specialty – and my sister has a great oncologist who is working with another doctor who is highly-specialized in this particular area.

Debra that was beautifully written – a testimony for you and your family and the many, many others who suffer from Celiac. Please tell your ‘sister’ that she is in my thoughts and prayers and has been for a while. Love you Debra.

Thanks so much Carol – it’s a long and arduous journey for sure; I’ll pass along your message to my sister (((hugs)))

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