Life with Celiac Disease
A very wise man in my life often tells me, “A problem well stated is half solved.”
Two years ago, we knew all of the problems, but had none of the answers. I had
handled two broken thermometers (had one put in my mouth by a nurse as a child) and
had dental work done where a doctor removed a mercury filling with no precautions
to prevent me from inhaling the mercury and I swallowed several chunks of the drilled-out
filling. We apparently had arsenic in our well water. I had been through 3 miscarriages,
was diagnosed with PCOS, had been through a pregnancy with hyperemesis gravidarum
that we were shocked that the baby and I lived through, was unable to lose weight
no matter how I tried, and was looking unhealthier by the day despite eating a traditional
foods diet. My daughter was covered head to toe in eczema, and had digestive problems
and cavities despite having been exclusively breastfed and never vaccinated. We
were eating a traditional foods diet, she took her cod liver oil and butter oil and
ate all the right foods, and I had done everything ‘right’ with her, yet she had
problems. My son was born at home and nursed exclusively, never given antibiotics
and unvaccinated, yet his teeth erupted with severe discolorations and other problems.
I sat and cried the night I first saw how awful his new teeth looked, and could
even see more discoloration under the gums. He had eczema, and he hadn’t even had
solid food yet.
I remember being on vacation, standing in the aisle at Whole Foods, holding coupons
for Enjoy Life cereal bars, looking at the box prominently labeled “Gluten-Free”
and thinking, “Anything but a digestive disease, Lord. I don’t think I could handle
that.” The next day, I remember opening the box up and tasting a bar and thinking,
“That’s not half bad. I might could live with eating that.” Truer words had never
been spoken...
Six months later, we suffered through the devastating loss of twins. I kept struggling
with why my children and I were in such poor health if we were only consuming God-made,
traditional foods. Probiotics, even massive doses, weren’t fixing our gut problems
and I just couldn’t get my daughter’s eczema go to away completely no matter what
I did. I thought joint pain must be normal, but I wasn’t even 30 yet. Surely there
was a big piece of the puzzle that I was missing. My health began to rapidly deteriorate
after the miscarriage, I was anemic and very weak and had constant sciatica despite
repeated trips to the chiropractor. Months later, I was still not recovered. On
July 4, 2006, I hit rock bottom. We were out of town with my husband’s job, and
after a restaurant meal that contained both gluten and MSG, I was convinced that
I was not going to live through the night. I was throwing up, having diarrhea, having
severe belching and hiccups, my whole body was wracked with excruciating pain, and
I could barely move. Every nerve in my body was screaming. I was in a panic. I
just wanted to get to the roof of the hotel and throw myself off to stop the pain.
But I couldn’t move. I remember finally passing out, laying on the bed, while fireworks
went off overhead.
The next day, my best friend told me she thought I had intestinal damage from celiac
disease, and she talked to me about getting tested. Of course, I didn’t want to
have celiac disease, so I stalled and delayed. But I did go gluten-free that day,
to get a better idea of whether that was my problem or not. We ordered the tests
from Enterolab. While we were waiting for the test results, my health just got worse.
I lived with violent, constant nausea and vomiting, dizziness, digestive problems,
and the vomiting would wake me up all hours of the day and night. I’d black out
if I stood up. My bones ached and I couldn’t stand up without assistance or move
on my own easily, the muscle pain and fatigue was so severe. I was severely cold
all the time. Despite it being July, I was living in winter clothes, buried under
blankets. My hair was falling out. My sense of smell was so acute I could smell
things that no one else could. I couldn’t eat, I couldn’t sleep, I couldn’t function.
I spent time in the ER for dehydration. I had been trapped in my own house since
getting home, unable to go anywhere except the ER. I left my house less than a dozen
times in a year.
I had classic gluten withdrawal symptoms. I also had what we later discovered was
adrenal fatigue (severe exhaustion, cold all the time, passing out when standing
up), possibly thyroid issues, arsenic poisoning and mercury poisoning (again) from
the mercury being released from my fat as I lost weight rapidly.
On August 8, my fear become reality. The test results were in. Both my children
and I had celiac disease. That afternoon, I had handled ONE goldfish cracker to
hand it to my son after he dropped it, and within 20 minutes I was desperately sick.
It only confirmed the lab results I was holding in my hands.
Thus began my long, slow road to recovery. In the following months, the nausea would
gradually fade, but any time I’d have an accidental exposure, I’d be back to square
one. For months I woke up with vomiting and diarrhea every day. I had to give up
gluten, dairy, soy, and eventually egg, cashew, corn and apple were also foods that
would make me sick. I dropped 60 lbs in about 3 months. I felt like anytime I ate,
I was playing Russian roulette. It was easier to just not eat.
The isolation was crushing. I only had two friends continue to have contact with
me, both of whom kept up with me by phone because neither of them lived near-by.
I was unable to leave the house, and I had to care for the kids. I went weeks not
seeing another human being outside of my husband, my children, and my parents. My
thirtieth birthday and the twins’ due date came and went with no one except my husband,
mom and two phone friends noticing. People whom I thought were good friends were
no where to be found. I still wonder how we survived those days, where I lived on
a mattress on the living room floor for weeks, alone most of the time with two toddlers
to care for without help.
Months went by. My hair finally began breaking off from the long period of malnutrition
and I finally had to cut what was left of it. I cried, because it was just another
casualty in a very long string of disappointment, pain and loss. We sometimes find
that we have no choice in things that we thought we’d never choose for ourselves,
and the lack of choices and loss of control was overwhelming. I had no choices.
The decisions were being made for me. I learned after a short period of time to
never again say, “I’d never...” or “If I were her, I’d...” I quickly learned that
when the chips are down and you’re the one faced with the decision, the weights of
the variables and the appearance of the options are drastically different.
The constant nausea gradually became half-day nausea, then morning-only nausea, then
it disappeared, only to reappear when I would have a gluten exposure. If I got exposed,
my immune system would go haywire and I’d have flu-like and digestive symptoms along
with joint problems and bone pain for weeks. After a year, we found I could tolerate
dairy cross-contamination and my recovery time from gluten had been greatly lessened.
In 2008, I resumed consuming dairy after 2 years of healing my gut, and only had
a minimal reaction to gluten.
Today, that well-stated problem has been mostly solved. I’m in better health than
I have been in a long time, even though I still have more time and work to go. My
joint pain and digestive problems are gone. My sciatica only flares if I get exposed
to gluten. My tonsils, that had been huge my entire life, have shrunk to a normal
size. My cycles are normal for the first time in my life, and my PCOS symptoms have
minimized. I don’t live my life feeling like I’m constantly in a fog or I’m loosing
IQ points. My rapidly encroaching dental problems have stopped and reversed themselves,
and I have healed multiple cavities. Health problems I never knew that could be
related to gluten exposure have disappeared.
The mercury and arsenic poisoning was finally diagnosed in the Summer of 2008 and
I began chelation that October after having my amalgams removed. Chelation will
take a year or two, however after just one round we again saw vast improvements in
my health.
My children’s eczema has disappeared. Their tooth problems have halted, and even
reversed. Their digestive problems are gone. Other problems, like sleep issues
and behavior, that I didn’t realize were connected, only show back up if they get
accidentally exposed. The only time my children wet the bed is when they’ve been
exposed.
I still avoid gluten, even in trace amounts, like the plague. Because I am celiac,
I will for the rest of my life. I’m fine with that limitation. I’d rather live
healthy with a food restriction than to die early of stomach or intestinal cancer
or lymphoma, and leave the same terrible fate to my children. I don’t want my children
to suffer like I have.
