The Celiac Life

When Gluten Free Isn’t A Choice

I mentioned several months ago that in October 2019 I was diagnosed with an autoimmune disease.

At age 37.

Autoimmune = major life changing = no cure = forever.

And in my particular case, no medication.

Symptoms started about a month following birth of my son, but honestly, this was probably in the making for a couple years given the amount of stress in my life…which only got worse with the addition of a newborn to the mix of one and two year old foster kiddos.

Terrible stomach pain of different varieties: stabbing pain, nausea, cramping.

There were other signs but I attributed them to the season of life: lots of littles needing more than I had to give, running on very little sleep, having to pick up and go like gang-busters after being down on bed rest for 15 weeks…you get the point.

It seemed to flare up more-so when I was over-tired and stressed (which, lets be honest, with 3 kids age 3 and under, including a newborn with tummy troubles of his own preventing him from sleeping, when wasn’t I over-tired and stressed?).

I immediately decided it had to be an ulcer but powered through for several months before bringing it to the attention of my doctor.

A referral was sent for a visit with a GI specialist and through blood work (which came back off the charts) and an upper endoscopy (best nap of my existence during that procedure) I was diagnosed with Celiac Disease.

Side Note: the gold standard for diagnosing Celiac is blood work later confirmed by biopsies obtained during an upper endoscopy. If anyone tries to diagnose you with one and not the other, force the issue or get a second opinion.

Celiac disease, put simply, is the body’s confusion about what to do with gluten. This is different from a gluten intolerance that, when gluten is avoided, folks “just feel better”. When Celiac is involved, the white blood cells of the body get confused when gluten enters the system and begin attacking (i.e. destroying) the lining of the small intestine. Over time the body becomes less able to appropriately process foods and absorb nutrients (which leads to a whole host of other issues) and with prolonged exposure, increases risk for cancer exponentially.

While there isn’t a plethora of information on autoimmune diseases, much research is pointing to intense, prolonged stress being a “trigger” that flips the switch from having a gene for an autoimmune disease to making that autoimmune disease active.

And to add insult to injury – autoimmune diseases present themselves differently across people. Ask ten people with a specific autoimmune disease to describe their symptoms, severity, sensitivity, etc. and you are likely to get ten different answers. So, these diseases are often overlooked, under-diagnosed and/or misdiagnosed.

Celiac wasn’t even on my radar when I went to this appointment so the shock associated with diagnoses took a little to overcome. No one in my immediate family has Celiac Disease (though, someone is carrying the gene that has so lovingly been passed down to me).

And the immediate frustration continues to linger to some extent.

Here’s why:
–in recent years choosing a gluten free diet (choice vs necessity), coupled by some peoples (<— hear me say: not EVERYBODY) obnoxiousness about it has caused a sort of shoulder shrug reaction from many folks in the food industry and misunderstanding that for someone with Celiac, ingesting gluten in any amount is dangerous. Therefore, you cannot just pick the croutons off my salad and call it “good”, or cook my eggs on the same griddle as you also make pancakes.
–having to educate people on Celiac disease (it’s not an “allergy” FYI) is exhausting and at the end of the day a lot of those words fall on deaf ears anyway
–we don’t eat out often but having the ability to do so with ease is missed beyond measure. Lots of the restaurants we used to frequent are no longer an option due to cross contamination concerns, and when we do eat out the exhausting process of “educating about Celiac” has to occur. Then, even after careful selection of a restaurant, and working with the server/chef to select a menu item I still roll the dice with exposure and sickness…and the last time I rolled and lost I was sick for three days with fatigue and joint pain that lasted weeks.
–convenience foods (either from the store or restaurants) are very limited and those that are in existence are: 1) expensive and 2) a lot of times not good….at all. Paying a lot of money to buy something with the texture and taste of cardboard is in no way gratifying.
–most social functions require me to bring my own food (brown bag style) or not eat at all and this just sucks…there’s no other way to put it.
–avoiding gluten 100% of the time is impossible. Unless maybe you live in your own sterile bubble by yourself and nothing from the outside ever enters (<— this is NOT my reality; I still need to be able to serve my kids a PB&J on regular bread that isn’t ridiculously expensive, or bake up some chicken nuggets from time to time that don’t also break the bank)

The good news?

I know what’s going on with my body.

I understand what ALLLLLLLL the tummy trouble was about and now know that the anxiety, brain fog, unspeakable fatigue, random joint aches and pains, bloating (and not “I feel a little puffy” but more like “no, I’m not 6 months pregnant, thanks for asking” bloating) etc. are a symptom of a disease I can control (to the best of my ability) with diet.

My family has been immensely supportive especially my husband and mom who are always on the lookout for new gluten free treats for me to try – as well as folks going above and beyond to ensure a safe meal for me to eat at recent Thanksgiving and Christmas family gatherings.

And so, regardless of how much was already on my plate and how limited my personal resources already were, a major life change has been in order.

This means more and more ‘made from scratch’ in our house – beyond what I was already doing. And the recipes I post here going forward will be Celiac Safe for those who suffer the disease, have an intolerance or have simply chosen gluten free as a dietary lifestyle decision…because…regardless your reason, I’ve got your back!

I’ll also be working to re-vamp previously published recipes because I feel confident that all those things I loved and wrote to you about before can be made Celiac safe with a few modifications.

So…stay tuned!

I made some mind blowing scalloped potatoes a couple weeks ago that were just as good – if not better – than the ones you can pick up at Costco. And, who doesn’t love the Costco scalloped potatoes? *raise both hands*

This…and more…coming soon!

And PS – I’d just about kill for a quarter pounder with cheese meal from McDonalds…or a donut…or some fried Chic-fil-A nuggets….or a milky way candy bar….or….or….or….so don’t tempt me!

Photo Cred: Paweł Czerwiński on Unsplash

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