30
Jan

The need for space

Some days it feels like I just need everyone and everything to fuck off.

The painful tingling in my hand from pinched elbow nerves can fuck off.

Diabetes can fuck off.

Eosinophilic Esophagitis can fuck RIGHT off.

Yesterday was my endoscope appointment with the gastroenterologist. He took biopsies of my duodenum, proximal esophagus, and distal esophagus. Why biopsy the esophagus (twice!), you ask? Well, apparently because mine is "furrowed".

What in the world is a furrowed esophagus, you ask?

A furrowed esophagus is one that has abnormal lines or trenches in it. It is also a classic sign of eosinophilic esophagitis, an allergic response to food that causes symptoms pretty much only in the esophagus.

Symptoms are things like dysphagia/difficulty swallowing (I don't have that), persistant heartburn (don't have that either), and  esophageal food impaction (aka when food gets stuck in your esophagus and you need a doctor to use a tube to push it down to your stomach. I definitely don't have that).

Samples are being sent to a lab, and I follow up with the doctor in a few months to get those results. Both the intestinal biopsy (for celiac) and the esophageal biopsies (for EoE) need to be analyzed to confirm or disprove these conditions.

Today I am pissed. I an ANGRY. I want to lash out. I feel like hitting things and screaming, because WHAT THE FUCK.

I am making a great effort to stay quiet about this today. My friends and family have been nothing but patient with me, and I really don't want to push my luck by putting them through any more fits of yelling and crying.

Boyfriend was trying to be all supportive and helpful last night by telling me that "Yes, it sucks, but it's better that you know. It's always better to know these things."

So today? Boyfriend can fuck off too.

15
Jan

My Celiac story

For the past few weeks I have been chasing something bad. I've been making phone calls, sending emails, knocking on doors, and trying to get answers, all for news I was pretty sure I didn't want to hear.

It started maybe a year ago. My dietician had a baby, so I saw a different dietician who was replacing her while she was on mat leave. I'm sure this woman isn't a complete idiot, but if I'm being honest I have to admit that her nutritional counselling didn't really inspire confidence in her skills as a dietician. We met, and right off the bat I told her my diet is mostly vegan. I don't eat meat and I'm allergic to dairy, so the veg diet fits me pretty nicely.

 

This woman kept trying to draw comparisons to a Paleo diet. I can't really claim to have an opinion on the whole Paleo/crossift lifestyle, but I know that a Paleo diet is drastically different from a vegan diet. I couldn't connect with this dietician in a way that allowed me to have meaningful discussions about foods and how different meals affect my sugars, and I left that appointment feeling pretty frustrated.

She did mention one thing that stuck with me though. I mentioned how I'd been trying to switch to more fruits and fewer bread-y foods for breakfast, as I was noticing that the bread-based breakfasts (bagels, english muffins, all that jazz) left me feeling sometimes a little bloaty, and I was usually hungry again sooner. I always assumed I felt hungry again quickly because a blueberry bagel, toasted to perfection then slathered with peanut butter, might be delicious, but it's not exactly overflowing with an abundance of nutrients. This dietician agreed that while that may be true, she mentioned in a sort of offhand comment "You might be celiac. You should ask your family doctor for a blood test."
Sensitivity and tact are not things that spring to mind when I think of this woman.

I walked away from that appointment angry and frustrated. I felt like we barely covered any of the things I wanted to discuss, this woman barely knew anything about me, and here she was throwing out ideas about me having a crazy life- and diet-altering disease.

 

I waited a few months and sort of stewed with the information. It wasn't until last May, when I saw my family Dr for something else, that I mentioned the possible celiac blood test and how my dietician had recommended it. He listened to my concerns, although looking back I'm fairly certain that my (slightly) biased opinion of this woman might have coloured the way I presented the information. My GP disagreed with the dietician and said he didn't think it was necessary to send me for that test, and I left that appointment feeling vindicated. I was RIGHT. She was WRONG.

 

My victory was pretty short-lived. I saw my endo in October, and by then I had done enough research to know that the link between Type 1 and celiac disease is pretty strong. I told my doctor the story so far and asked what her thoughts were. She didn't seem worried; I'm not symptomatic and don't have any clear gastro symptoms, but she was surprised that I had never actually been screened for celiac disease and agreed that it might be a good idea to get the test. She gave me two lab requisitions for bloodwork that day: one for my next appointment in six months, and another for the same day for the celiac tests. Her office promised me I would get a phone call to let me know either way.

 

Early in December I emailed my nurse to ask her for those results. She sends me A1C results and medical advice by email all the time, so I was hoping this result would follow suit. Instead, I received a very vague and unsettling reply that said she had passed my question to my doctor, who would be in touch with me directly.

That one raised some red flags. For the first time I began thinking about this as something ..... bad. Something serious. Something more than just a minor annoyance of a blood test that I was taking to be thorough. I waited a week, then called and left a message with her secretary. This was right before the holidays, so everything just sort of floated around in the back of my mind for about two weeks in December.

 

On January 5th I took a break at work to call my doctor's office again. I spoke to her secretary, who pulled up my lab results from October and told me that "the lab result had been flagged as 'high' for certain results". The red flags that were already up had turned into blaring sirens and alarm bells. She said she would email my doctor those results and request that I receive a follow-up, but my doctor didn't have clinic hours until later in the week so it may be a few days before I hear anything.

That sick feeling of dread in the pit of my stomach was getting pretty loud at this point.
Lucky for me I wasn't kept waiting very long. That night I went out for dinner with my parents, grandmother, and boyfriend. It was one last dinner before my grandmother got a plane back home for the holidays. I ordered a pasta dish, and brought home leftovers that I figured I would reheat for lunch the next day.

At 7:30pm I received a phone call. The call display said it was coming from the hospital. I felt sort of spookily chilled when I saw the hospital's name across the screen, and when I picked up, and it was my endocrinologist. She apologized for calling so late, then told me she was calling about the blood tests.

 

 

She told me I have celiac disease.

 
The rest of that conversation is kind of a blur. We agreed that I will see an gastroenterologist for a confirmatory endoscope test, and in the meantime I will see my clinic's dietician for follow-up nutritional counselling.
This is the beginning of the gluten-free part of my story. Forgive me if it is, at times, overemotional or awash with a flood of food-related frustration. This is just another piece of the increasingly complex pile of pieces that make up my "health." I can do this.

2
Jan

<3

For those lows when it feels like laying down is great, and no matter what happens I should lay down and should stay that way:

image

boyfriend aka bringer of juice

I am very lucky to have him.

Back to Top