I Went Gluten-Free For Four Months And It Didn’t Change My Life


Hi, I’m Caira, and I have type 1 diabetes and Graves’
disease.

These are autoimmune diseases that affect the pancreas and
thyroid, respectively, and they like to travel
together. It’s generally unclear what causes autoimmune
diseases (genetics! environmental factors! infections!), but
once you have one, it’s more common to develop another.

Marcos Chamizo / Via BuzzFeed News

ID: 9483909

So what is gluten, and why can’t I eat a meal without hearing
about it?

Gluten is the collective name for specific proteins found
in wheat and other grains. Its ubiquity in mainstream health
conversations has risen from the popularity of its
absence in mainstream diets.

Dr.
Peter H.R. Green, director of the Celiac Disease Center
at Columbia University, explained that a lot of people
without celiac are advised to go on a gluten-free diet
to reduce inflammation and risk of autoimmunity, or reduce a
variety of symptoms, though there is no scientific evidence
it will actually help. (He explained this to me, in fact,
when I became his patient, and after I’d already begun the
diet.)

ID: 9501023

For people with
celiac disease, a gluten-free diet is non-negotiable.

Celiac disease is an autoimmune disorder where the small
intestine cannot tolerate gluten ingestion. All sorts of
painful symptoms and damage to the organ occur if gluten is
consumed, so the only way for someone with celiac to live is
through a gluten-free diet.

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Outside of celiac disease, there’s a broad range of how
gluten is tolerated by different people.

Outside of celiac disease, there's a broad range of how gluten is tolerated by different people.

View this image ›

Marcos Chamizo / Via BuzzFeed News

Gluten-related disorders include wheat allergy and non-celiac
gluten sensitivity (NCGS). There are also people
without a diagnosed allergy or immunological response
who report feeling better without gluten in their diet.

There has been skepticism over how “real”
NCGS is as a condition — in that some believe if you don’t
have actual celiac disease, then you don’t have a problem
with gluten. But medical research shows otherwise.

“NCGS — defined as resolution of symptoms on withdrawal of
gluten and recurrence of them with gluten introduction —
does exist,” said Green. “We are certain that it does
actually exist because we identified biomarkers
(abnormalities) in blood from NCGS patients.” (Green touches
on all this in thoughtful depth in his book
Gluten Exposed).

That said, per Green, there’s no scientific evidence to
support the idea that everyone is intolerant to gluten
and/or that removing it from your diet will make you feel
better if you don’t have a diagnosed allergy or intolerance.

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Truly, for some people, a gluten-free diet changes their
life. I just was not one of these people.

Here are the things I learned instead.

ID: 9525831

1. At
first, I felt better.

Particularly in the first few weeks after I eliminated gluten
from my diet. Mentally, it was a relief to believe I had
something to point to as the Definitive Cause for what ailed
me, for the perennially annoying gastrointestinal issues I’d
had for years before my autoimmune diagnoses, and for the
exhaustion I experienced on a now daily basis.

I also enjoyed a sense of smugness in my newfound use of
zucchini noodles and extreme bagel avoidance. (My heart
health will go through the roof!
) There was something
virtuous and calming in the careful restocking of my pantry
with gluten-free items. “Behold these bags of almond meal!” I
exclaimed with internal pride. “Look at me and my stacks of
coconut flour pancakes!”

This novelty lasted six days.

ID: 9484035

2. Then I
felt worse.

Two months into the diet, my vision of walking through fields
of farmers markets righteously carting loaves of gluten-free
bread had soured. Physically, I felt as mediocre or worse 70%
of the time as I had before I’d stopped eating gluten. The
idea of doing both work and exercise in a single day was
hilarious. If I had gotten to the cause of my symptoms and
was actively following protocol, then why didn’t I feel
better? My blood sugar levels were being managed with
insulin, and my thyroid production with antithyroid
medication, so it didn’t make sense to me that I’d still be
feeling wretched from those diseases if they were under
relative control. It also didn’t make sense that eliminating
gluten hadn’t resolved the stomach problems I was told it
might.

Dr. Murray Orbuch, assistant professor of gastroenterology at
the Mt. Sinai School of Medicine in New York, explained, “The
fad of blaming gluten for gastrointestinal issues has taken
on an unscientific life of its own. The symptoms associated
with true celiac disease, where an immunological response to
gluten results in gradual damage of the small intestinal
lining, are often difficult to distinguish from other
conditions that result in similar symptoms. Before someone
embarks on a highly restrictive gluten-free diet, it’s
imperative to confirm that’s what’s actually going on.”

In the months prior to my diabetes diagnosis, I inhaled sugar
and carbohydrates to tame the demonic cravings that greeted
me each day. I was unknowingly peeing out sugar most of the
day (and night) courtesy of my failing pancreas. I didn’t
exactly understand how I was sick, I just knew that if I
didn’t eat or drink constantly, then something sinister would
happen. So it makes sense that switching into lower
carbohydrate mode when I went off gluten gave my pancreas
some much-needed rest. This is probably the real reason why I
felt better at first on a gluten-free diet: not because I
wasn’t eating gluten, but because I wasn’t giving a failing
organ more work to do.

ID: 9500945

3. Being
gluten-free was exhausting, inconvenient, and expensive.

Being gluten-free was exhausting, inconvenient, and expensive.

View this image ›

Marcos Chamizo / Via BuzzFeed News

I bought
coconut flour my first week on the diet and was so taken
by its newness, you would have thought I invented it. On the
second purchase, I realized it was roughly twice the cost of
regular old flour and deemed the experience far less cute.
For people who have to abide by a gluten-free diet forever,
it seems preposterous that their nutritional basics are only
available at such a markup.

I figured once I got in the groove of my diet, it’d feel more
manageable, but what I felt instead was lonely and anxious. A
sense of emptiness permeated the grocery store aisles as I
wandered from row to row, looking at all the things I wasn’t
supposed to eat.

I didn’t enjoy the extra attention to my eating habits that
being gluten-free entails. You have to bring it up every time
you sit down at a restaurant or walk up to a counter, a
buffet table, your friend’s kitchen, a work dinner. Every.
Time. When you’re hungry and want to eat something quickly,
this is already a hassle. When you’re diabetic with low blood
sugar, this is catastrophic.

If you have celiac disease, then you have no choice. This is
your diet, every day, for the rest of your life. I had a
nagging sense that if I did not actually have any sensitivity
to gluten AND I wasn’t feeling better without it, then there
was little point in willfully submitting myself to these
dietary restrictions.

ID: 9483912

4. I’d
spent so much time in diagnostic purgatory with my belly, I
was ready to believe gluten was to blame before I’d stopped
eating it.

Before I’d even walked into the office of the doctor who
suggested I try it. To be clear, this physician was not a
quack. I didn’t find this advice on Craigslist. I
deliberately sought out a health practitioner with a focus in
“functional medicine” (aka a doctor whose practice is more
holistic or incorporates alternative medicine) because I was
frustrated by the lack of diagnosis from traditional
medicine.

I’d spent nearly a decade in and out of the
gastroenterologist’s office with various stomach infections
and digestive issues. Even though I had two definitive
diagnoses to explain aspects of why I didn’t feel well, there
were still a few loitering symptoms these conditions didn’t
explain.

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5. There’s
only so much the body can do to tell you something is wrong,
and sometimes it sends out similar signals for different
kinds of problems.

There's only so much the body can do to tell you something is wrong, and sometimes it sends out similar signals for different kinds of problems.

View this image ›

Marcos Chamizo / Via BuzzFeed News

“The body reacts to different stresses, toxic substances,
infections, or foods in only a limited way — such as pain,
bloating, or diarrhea,” said Green.

The symptoms I’d experienced for years matched those of a
person with celiac disease. They also matched a number of
lesser-known GI conditions, one of which turned out to be my
actual problem (a chronic bacterial infection in the
small intestine, if you really want to know).

Turns out I didn’t need to go off gluten to feel better. I
needed to go on antibiotics. #oopsie

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6. Once you
think gluten is bad for you, it is hard to unthink it.

Even after I was told, “Yes, eat gluten, it’s not going to
hurt you because we treated the real issue,” I hesitated. The
well had been poisoned. Was this afternoon headache a random
occurrence or BECAUSE OF THE GLUTEN IN MY SANDWICH (certainly
never from lack of sleep)? There was this weird psychology of
choice at play in seeing lunch options arranged by those that
had gluten and those that did not.

But it’s problematic to look at gluten itself through a
polarizing lens of good or bad. Gluten is a type of protein
naturally occurring in a number of healthful diet staples.
Whether your body can ingest it properly depends on biology,
not on willpower. In the same way I can’t decide, “Nah,
thanks, I’m not going to take my insulin tonight,” someone
with celiac disease can’t eat a basket a fried chicken
without serious bodily consequences.

“A misconception of a gluten-free diet is that you can cheat
every now and then,” said Orbuch. “If you really have celiac
disease, the dietary restrictions are absolute. This is
because unlike classical allergic reactions, the response to
a dietary indiscretion is not instantaneous and symptoms may
not appear for weeks.”

Marcos Chamizo

ID: 9585924

7. I really
wanted to have what she was having.

Not just a bite of Sally’s
sandwich, but everything that everyone around me was eating.
I didn’t want the handful of almonds. (Sorry, almonds.) I
wanted the co-worker’s birthday doughnuts and to try the
snacks my boss brought back from Japan. I wanted to join
group birthday dinners without eating beforehand, just in
case. I wanted to stop for a slice of pizza.

I simply didn’t appreciate how difficult it is to eat outside
the box. And because I had to speak openly and often about
what I couldn’t eat, I got a lot of unsolicited feedback on
what I was doing wrong or what I should be doing
instead.

There is a lot of joy in the spontaneity of eating, and I
longed for the simpler times of being able to put whatever
was on the table on my plate.

Those who commit to a gluten-free diet for life (or at least
longer than four months like me), whether out of choice or
obligation, probably develop an arsenal of go-to meals and
snacks. Perhaps the idioms I associate with healthy,
lighthearted eaters — “run out for lunch!” “grab a bite!” —
manifest in time and reconfigured ways of eating for someone
on a different sort of diet. I commend them. But during my
time I only felt the heaviness of calculation. Every meal was
an assembly, each ingredient accounted for. This, on top of
the carb-counting I was already doing for diabetes, was too
much. Mealtime became sadtime, quickly.

Marcos Chamizo

ID: 9705216

8. In the
end, what I’d really been after was the one thing I couldn’t
have.

Control.

I was just tired of the vagueness. I was tired of hearing “we
don’t really know.” I wanted to feel better. I wanted a hard
answer. So when someone suggested, “Maybe it’s in your diet,”
I listened.

“My diet!” I exclaimed. “Yes! I can control my
diet.”

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9. When I
learned gluten wasn’t at the root of my symptoms, I got
really angry at the Gluten-Free Industrial Complex that made
me think it was.

When I learned gluten wasn't at the root of my symptoms, I got really angry at the Gluten-Free Industrial Complex that made me think it was.

View this image ›

Marcos Chamizo / Via BuzzFeed News

I was disappointed that a gluten-free diet didn’t resolve my
GI symptoms, and then I was upset that I’d believed it could.

In the two months following my return to glutinous matter, I
developed a rather unsavory disdain for the glowy,
gluten-free lifestyle I saw touted on Instagram accounts.
Why? Because I’m jealous. In my mind, these detached
representations of the wellness I didn’t have made me feel
like a failure for not getting it right. I occasionally
wondered that if I’d done it better, longer, that I could
have “achieved” something.

I’d gotten my hopes up, and it didn’t pan out.

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10. But in
the end, illness changed my life. Not gluten.

Frankly, the day-to-day management of autoimmune disease is
boring. Looking at glossy book covers promoting the 86 things
I can do to HEAL MYSELF TODAY is much more interesting than
the mundane reality of monitoring my blood sugar and giving
up booze. Chronic illness is tedious. The constant
reconfiguration of what carbohydrates I can eat and where
they fall on the
glycemic index is a nuisance.

I had my needle stuck on this idea of figuring out what I
needed to do to feel better, so that I would never feel
unwell again. Ever. I can appreciate my determination here
(*sad laugh*) but the reality of my biology is such that this
approach leads only to disappointment and ire. I have two
autoimmune diseases. There are days that I am not going to
feel well, no matter what I’m doing, or how well I’m doing
it. There are days I feel powerless, and depleted.

There are also days I forget anything is the matter.

Marcos Chamizo

ID: 9484053

11. I can’t
eat my way out of these conditions.

I also can’t concentrate, blame, deny, spend, ignore, shame,
wallow, or StairMaster my way out of them either, though
certainly not for lack of trying. (Kidding. I would never try
to StairMaster my way out of anything.)

What I can do, every day, and sometimes 167 times a day, is
learn and relearn to live with them.

So I’m doing that instead.

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