Last February, my husband was incredibly ill and spent a week in the hospital battling cerebral meningitis. The crazy thing - we were veterans at that point. He's been hospitalized on three separate occasions for this. But after this last stint, he just couldn't get back to feeling "right."

At first, he was just incredibly lethargic. I will be honest, I was getting aggravated that he'd sit and watch TV all day. He'd also complain that he just didn't feel good and had stomach issues. I told him to lay off the Red Bulls. (I know, I'm a delightful wife.)

When he visited the ER on the first occasion, he was diagnosed with anxiety. This was new territory to me. My husband isn't an overly anxious guy. He can drive through wall-to-wall traffic at 70 mph pulling a camper and not break a sweat. I drive around Bowling Green, KY, with all my sensors and I'm still a hot mess.

On his second trip to the ER, they gave him some stronger anxiety meds and told him to take his blood pressure medication at night.

Then, one Sunday morning I woke up to the text that read, "I am going to the ER. I love you. Call me when you wake up." I turned over and he was in bed. He had gone to the ER and was already home but this time was diagnosed with a mini-stroke.

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Something was wrong... Seriously wrong.

He saw his doctor and a gastro specialist who almost immediately scheduled a scope. I'll be honest, I thought they were crazy. What does a stomach scope have to do with blood pressure? And when his diagnosis came back that he had Celiac's disease and was gluten intolerant, I thought, what does THAT have to do with any of this? I had no idea how far down the rabbit hole was that lay before me.

Celiac's 101

There are a lot of misconceptions about Celiac's disease. First off, most people think it's a made-up allergy. Your throat doesn't swell shut so shut up about it. According to the Celiac Foundation: 

Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.

 

When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.

His own body was destroying his stomach and intestines. And the list of symptoms that ingesting gluten causes goes far beyond a stomach ache such as:

  • abdominal bloating and pain
  • chronic diarrhea
  • vomiting
  • constipation
  • pale, foul-smelling, or fatty stool
  • iron-deficiency anemia
  • weight loss
  • fatigue
  • irritability and behavioral issues
  • dental enamel defects of the permanent teeth
  • delayed growth and puberty
  • short stature
  • failure to thrive
  • Attention Deficit Hyperactivity Disorder (ADHD)
  • unexplained iron-deficiency anemia
  • fatigue
  • bone or joint pain
  • arthritis
  • osteoporosis or osteopenia (bone loss)
  • liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
  • depression or anxiety
  • peripheral neuropathy (tingling, numbness or pain in the hands and feet)
  • seizures or migraines
  • missed menstrual periods
  • infertility or recurrent miscarriage
  • canker sores inside the mouth
  • dermatitis herpetiformis (itchy skin rash)

Gluten Hiding in Plain Sight

When we first started this journey, he still wasn't feeling great and it took a while to figure out that so many things had gluten hiding in them like spices, ice cream, candy, sauces, french fries, condiments, drinks, and even non-food items like envelopes and beauty products. It took us even longer to play the cross-contamination game. Toasters, pans, and crumbs on butter or in jam or peanut butter all became the enemy.

I only occasionally gluten him now by mistake. It usually only happens when I use a new spice or do some bone-headed thing. The butter one was hard to figure out. He kept getting sick when he'd eat a baked potato. Potatoes don't naturally have gluten so when we figured out the butter was touching knives that had touched things like toast, it was an eye-opener how little gluten is needed to cause a reaction.

But the really big thing is - he can't go out to eat much anymore. I cook at home most nights but when we do go out now, he has to be careful. We have to be careful. Last week, I picked up food and specifically told the gal that we needed gluten-free - NO BUN. I failed to check the order and of course, when I got home there it was - a burger on a bun. It touched so he couldn't have it. We've learned that only a couple of restaurants in town actually take "gluten-free" seriously and have a gluten-free prep station and ingredients. We pay about 30% more for the gluten-free option but if it keeps him from getting sick, it's worth it.

Why is Everyone So Judgy?

Another thing I have noticed is the snarkiness involved when you say you eat gluten-free. Like you are being "extra." On some Netflix show last night, a character chided another character for eating gluten-free. And I watched a documentary that featured a bread maker who claimed that gluten-intolerant individuals could eat his gluten because it was ancient gluten. Ummm. What?

Now, I'm not here to cancel anyone or call anyone out. I chalk it up to a basic ignorance on the subject. I mean, I feel like mini-strokes are a viable symptom that we should try to avoid - even if that makes him boujee or extra. People don't consider those with shellfish allergies to be extra when they say NO SHRIMP - I'M ALLERGIC! Do they?

With more people being diagnosed, it's becoming easier to find food at the grocery store and restaurants that take gluten-free seriously. I also take every chance I get to remind individuals who believe gluten-free is some make-up fad diet that news flash - it sucks and no one wants to deal with it.

Educate Yourself - Even If It Doesn't Directly Impact YOU

If you work in food service, I urge you to educate yourself. You might not kill my husband, but you will make him incredibly miserable. If you think you might have Celiac's Disease, contact your doctor. There are tests that can confirm a diagnosis. And, finally, if you are thinking about making fun of someone who has Celiac's or presenting yourself as an expert on the matter when you clearly are NOT, just do us all a favor and don't.

Goosebumps and other bodily reactions, explained