An unexpected development

My husband and I have a sweet tradition. Every November, we eat at the same restaurant where we got engaged. 2016 marked 10 years since that day where, after a year of friendship and four months of dating, he surprised me with a sweet proposal. The rest is over 10 years of shared history. We even outlasted the original restaurant! We thought our tradition may have to change with my CD diagnosis, but not only did it not, the venue was able to provide THE most delicious meal. We had a sweet and spicy shrimp appetizer. I ordered an apricot and brie stuffed chicken that included roasted butternut squash and other autumn veggies with potato dauphinoise. I searched for an approximation for each of these dishes, so skip the panko and radishes on the chicken and go gf for iffy ingredients, but if you make it and keep moaning, “Oh my gosh, this is SO good” I got it pretty close. Let me know! I’ll try to recreate this meal and will post a recipe when I do.

But back to the night; what should have simply been a lovely night was more than a little marred by events earlier in the day. I had my yearly check up and despite all this new CD stuff, I didn’t expect anything to go differently for that genre of care. I let my doctor know my new diagnosis and it was business as usual. Until she took a look at my throat. She pulled a face and asked me if I’ve had trouble swallowing. I had, but I also had been battling a persistent chest cold since Halloween and chalked it up to drainage. She said the left side was terribly swollen and she was concerned. I could tell she was concerned. It took on an almost gleeful level of exclamation of outbursts like “I mean, just feel it!” and “Oh wow, that isn’t right at all.” A little shoulder pat and the reminder that “you know, once one autoimmune disease kicks in, it can be light a little light switch!” Thank you, Professor Umbridge. She decided to do bloodwork and schedule a sono. As she escorted me to the scheduling nurse, she let loose one last missive, “I bet they find something there.”

I will spare you the self-righteous rant I spent way too long typing. The woman upset me greatly. I know there are facts about CD and other autoimmune conditions. But a month into diagnosis, I thought the one was enough. I hoped that if I took good care of myself, I wouldn’t have to worry about a pile-on for years. Decades. I was concerned enough about the issue to just days prior ask if anyone was living with CD and only CD. Here’s what you should know:

Yes. Many people are diagnosed with Celiac and nothing else. I found exactly zero studies on exactly how many. I did find studies about the role of genetics in CD, and if you want to learn about CD and its genetic presence and what it can mean for your body, I suggest this read.

No. You’re not going to die. People who adhere to a strict gluten free diet and were diagnosed within 10 years of presenting symptoms look to fare better than those who don’t and that in general, life expectancy is the same for your CD free doppelganger as you. I couldn’t find any article that discussed quality of life when dealing with CD and additional autoimmune disorders. I did find some great (and readable) stats about CD in general and we are actually really lucky to know what we have.

Yes. Just like with any other disease or illness, your age, health, the time it took you to
get diagnosed, and proper adherence to a modified diet are going to play a role in your successful management of Celiac Disease. This study concludes that the way the World Health Organization has allowed trace gluten to still be considered gluten free may be adding to low recovery rates. Unless you eat what you grow in your backyard and hunt, you cannot 100% know if you are being exposed to gluten. It is insane to expect all of us to do that, so it is my personal opinion that there is going to be skewed data until there are better regulations and uniformed labeling.

Yes. People who have Celiac Disease can develop more autoimmune diseases and disorders. The most readable article I found was a super current, 2003 Woman’s Day article on WebMD. I’m sorry. The least readable, 2009 scientific article I found here also suggests a positive correlation across autoimmune diseases.

There does seem to be a thyroid and CD connection. There are actually several connections to celiac. The linked article shows this table with the odds:

  • Type 1 Diabetes Mellitus: 2.4-16.4%
  • Multiple Sclerosis (MS): 11%
  • Hashimoto’s thyroiditis: 4-6%
  • Autoimmune hepatitis: 6-15%
  • Addison disease: 6%
  • Arthritis: 1.5-7.5%
  • Sjögren’s syndrome: 2-15%
  • Idiopathic dilated cardiomyopathy: 5.7%
  • IgA nephropathy: 3.6%

You may as well know that chronic inflammation can and does lead to cancer as well.

Finally, if you are doing everything right and still have symptoms, know this: there is a 20 parts per million allowance in food that is gluten free. That means that even if your foods are labeled gluten free, there is a reasonable chance they contain 20ppm or less. This amount has been proven to be enough to still agitate. If you go in for your follow up and don’t have improvement, don’t assume you are unresponsive to a gluten free diet.

It’s funny how little numbers and small odds start feeling really big when they apply to you. I believe that knowing is better than ignorance, and even I avoided looking into this side of Celiac Disease. I was happy to publically wave my tiny Celiac Disease banner and feel like an ambassador. That by being open with my diagnosis, I can help create a conversation about this condition and put a kind face to what can often be hugely annoying accommodation in our community. But more? So soon? The fact that I can do everything right and still get this snowball of problems when I’m only 32 and I want to travel and live and be strong…that’s scary. I have two kids I’d like to keep homeschooling and be there fully as they go through life. I want the future I felt was reasonably guaranteed to me in early October. Four weeks have turned my expectations upside down. I am sad. I am scared. But I’m still going to go out and have my 10 year engagement anniversary dinner with my incredibly supportive husband. Because for everything that I feel is owed to me, I owe myself. My head was pulled out of the sand today. But that just means I have the opportunity to keep it held high. There are a lot of things we no longer can control and I can’t promise we’ll all be ok. But I can promise grace and self forgiveness. I can promise I will appreciate what I do have, and still be a crab sometimes because I am allowed to be imperfect. I will absolutely allow myself time; to process, to accept, and to know that options only improve as time goes on. And I sure as heck can promise I enjoyed my flourless cake desert. Here’s to another 10.


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