There is so much to say about having celiac disease that sometimes thoughts don’t come together in a single theme. Today is one of those days, so enjoy the potpourri of thoughts on celiac disease!

Healthcare costs

A study recently came out saying that healthcare costs for those with celiac are higher than a similar cohort of non-celiac patients over 5 years from 2010 to 2015. They looked at insurance billing codes for those with biopsy confirmed celiac disease vs. a comparable non-celiac patient. They noted that celiac patients consumed more healthcare including inpatient admissions, emergency department visits, gastroenterologist visits, dietician visits, endoscopic biopsies, and gastroenterology imaging in the year prior to and immediately following diagnosis. Scientists discovered that first year and second year costs were significantly higher for those with celiac.

I’ll be honest, this sort of surprised me. The kicker is not only do we have higher costs associated with healthcare consumption, but we also have a higher disease burden than most. So, not only are we socially isolated, carry a greater disease burden, and now it costs us more in healthcare consumption to have the disease. We really hit the jackpot here!!! (Sarcasm included)

Eating

My husband’s office has had some staffing issues due to this Covid pandemic. So, he has enlisted me to temporarily help out. The job I’m doing requires me to go into his office. Since I’ve had Covid, that isn’t the major concern for me – its eating. Hopefully this job is temporary until they can find someone more permanently, but for now, it’s all me.

His office is only about 10 minutes from our house and I eat at my desk most days. So, I’ve had to experience the trouble of eating outside my home more often than ever before and coming home and cooking a gluten free dinner. I’m only working from 8 until 3 while the kids are in school, but it has definitely been a shift.

I’ve found some almost 100% gluten free restaurants around his office. I’ve brought my lunch. I’ve even ordered food from places that only have a gluten free menu after some careful vetting. I’ve eaten a lot of Chick-Fil-A too.

I’m finding that I can manage to eat, cook gluten free dinners, and manage our lives without much heartache. It is something I thought I couldn’t do, but I’m proving I can do it!

I know many of you already struggle with this already – juggling a gluten free diet, cooking, and being able to eat with co-workers. I get it. I’ve always gotten it. I know how hard it is and I hope that when I post about food that it helps alleviate that burden.

Comparison of Symptoms

Stop. Don’t compare yourself to everyone else. Educate yourself on how your body works within the confines of your celiac disease. Just because I believe my fingernails turn bright blue because of celiac disease does not mean it is celiac related. Educate yourself on how your body reacts to gluten.

A self-gluten challenge isn’t going to set you back so far that your life will never be the same. When I did the two gluten challenges in the Nexvax trial, my blood test numbers, TTG IGA, did not move. While the damage is there it isn’t permanent, you will recover. Before I go any further, please before attempting a self gluten challenge. I don’t want anyone to hurt themselves.

Finally

Take good care of yourselves. Don’t let people push you around because you need to eat gluten free meals. If they cannot support or accommodate your needs, then don’t eat. Eating is important, but waiting until you can get a safe meal is even more important. Your health and well-being mean that you can take care of those you love for longer.

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