It is a
question that usually annoys me because it is an inaccurate statement….
"Have
you always been allergic to gluten?"
This is NO allergy.... it
is an autoimmune disease, and it is very possible to die as a result of
it.
Yes, I have had this disease my
entire life, even though I was not diagnosed until I was over 50.
It is still a difficult diagnosis to arrive
at: celiac disease.
My story
really begins in my childhood. For one
thing I have had “dark circles” under my eyes my entire life… that is a
symptom. My teeth were never really
white, because celiac disease means that my body does not retain nutrients,
minerals, vitamins…. it is a symptom to have discolored teeth.
I had a
lot of stomach aches. I was besieged with
environmental allergies…. I slept a lot… not really “normal” teenage stuff, but
‘dead to the world’ naps that could last for hours. At age 12 I learned that my body, my
digestive system does not digest some foods properly,…corn, hot dogs, white
bread….. I stopped eating corn, but not hot dogs or white bread. I was too young to understand the problem,
and to comprehend the need for any deeper analysis.
Until I was about 30 years old,…and I had
chronic diarrhea ---for over a year! No health insurance, and certainly no
desire to be forced to have,..unpleasant medical tests/procedures. So I read and researched, and talked to the
lady at the local health food store –who happened to be fairly knowledgeable when
it came to homeopathic “cures”. I discovered that acidophilus (probiotics) helped.
I stopped
buying bread to eat at home, switching to tortillas instead. A friend who grew up in Mexico used to say
that tortillas were healthier than bread, I took that to heart. Unfortunately I still did eat bread in
restaurants. And I still consumed other
grains, never making the final connection to wheat or gluten.
Every
winter since my 26th year I experienced horrible itching. First it was just my legs,… tortuous, burning
itching…. (imagine the fleas of a thousand camels….) No hives, no dry skin, no
visible sign except for the marks left from scratching. I talked about going outdoors and burying my
bare legs in the snow. That
sounded/seemed like it would help… I never actually did it.
Later
the itching came up on my back as well,…it is called formication….”Formication is the medical term for a sensation that exactly
resembles that of small insects crawling on (or under) the skin”… it is torture, pure and simple,…scratching
does not help,..where you scratch is not EXACTLY where it itches…. There is NO
RELIEF from formication. It is not good
to scratch, and definitely bad to scratch until it bleeds,..and yet one does so
– scratches until it bleeds –without realizing what one is doing.
Another
thing I did was to keep a food diary.
That means that I had a little notebook in which I wrote down everything
I ate, every day,… for more than 6 years….. I wrote down what I ate, and the time of day,…
but not how much I ate, because I was tracking symptoms more than quantity… I
wrote the symptoms in the notebook as well.
It helped to a certain extent….keeping a food diary can be a useful tool
for anyone who is trying to lose weight, and to track symptoms and look for
links to diet in those symptoms.
Eventually,
without really thinking about it I began pushing away foods that made me feel
unwell....I stopped purchasing anything that made me feel unwell…. Pasta should
have been a sign –I LOVED noodles, and I was not buying any pasta…for several
years! Another sign of dietary problems is cravings… while I did not actually
crave bread –any time I was in a restaurant I ate a large amount of bread. (a
basket full of bread was nirvana)
Winter
came, 2006, I read an article about hypoglycemia, and decided that perhaps
sugar was the problem. You know those
articles that say that “the average adult consumes 8 pounds of sugar a year”,…
I used to laugh, but in the early part of 2006 I started to pay attention to my
sugar consumption. What I learned
shocked me,… it was not funny. I really
was consuming a huge amount of sugar. I
took immediate steps to cut down on the sugar intake. The itching went away! This was a successful strategy, and it worked
for me, but only for about 3 years.
By
early 2010 the itching had returned
-with a vengeance,..and the formication was worse than ever before. I tried a rotation diet. Meaning that I stopped daily consumption of
bread and pasta (I did still eat pasta in restaurants)…. I allowed myself to
eat bread and pasta ONLY every 4th day. The itching stopped. I made it through that winter with no more
itching. (and no, I have never figured
out why it is so much worse in the winter)
When I
realized that I had not eaten pizza in 11 months I knew that something had to
be seriously wrong. I did not WANT
pizza! That was CRAZY!! I used to eat
pizza at least once a week. I was not
buying/eating frozen pizza, and I had not ordered pizza for delivery for 11
months.
Meanwhile,
several people I knew were fighting various types of cancer. Adrenal cortical carcinoma, breast cancer,
liver cancer, and other types of cancer.
At that time I read an article that informed me of a fact most people
are unaware of: colon cancer is curable.
The only thing you need to do is get a colonoscopy! During the procedure
they remove any polyps that are found. They analyze the samples and determine
what, if any, further procedures are required.
I never thought I would EVER volunteer for a colonoscopy. But I did.
They did an endoscopy to look at my esophagus and stomach, and then a
colonoscopy. I did not know they did
anything. I mean that the anesthesiologist did a perfect job, and the doctor
clearly knew exactly what he was doing.
No pain, no discomfort afterward.
Prep for colonoscopy is as easy as drinking a specific liquid, and not
consuming any solid food.
A couple
of days later the doctor’s office called me.
The nurse asked me if I knew what sprue was. I was dismayed, but “yes, I
know what you are saying to me.” Celiac
sprue was found. That is celiac disease,
which is an autoimmune disease. I am one
of the lucky ones. Most people with
celiac disease are not diagnosed until they are hospitalized, losing weight
rapidly, and quite literally dying.
I was
over 50. I was sick for most of my life.
It is a fact. Looking back over
my entire life, at my health condition, and all of the problems I can remember
having,… I was born with celiac disease.
Knowing what I do about my parents I believe that both of them actually
had undiagnosed celiac disease. Celiac
disease is very tough to diagnose without the colonoscopy and blood work. If they are not looking for it (celiac sprue)
they will miss it. If you have not
consumed gluten in several days or weeks the sprue can be missed.
I was
not happy with this diagnosis, but I was very relieved to finally have an
answer. Celiac disease explains so much
about my symptoms. Never mind what
medical “professionals” say, because they do not know everything. After the diagnosis one of the first things I
did was to ‘google’ it… Celiac disease.
What I found was Celiac.com, and forums where you can communicate with
people who have had diagnosed celiac disease for more than 30 years. At Celiac.com there is a long list of
symptoms….symptoms that doctors do not see as connected. I had itching, fatigue, “irritable bowel
syndrome”, stomach bloating…. And myriad other symptoms. Those symptoms, to a medical doctor, do not
seem to be connected, and yet they are all symptoms of autoimmune disease. They are all symptoms of Celiac disease.
By time
I was diagnosed it was easy for me, because rather than eliminate foods I was
able to add foods! because the whole world of Gluten Free foods opened up to me
-at the same time the market for it was beginning to grow by leaps and bounds.
I lack nothing!!! sometimes I do wish I could have whatever my head desires
whenever I want it, but I am OK and I am Gluten FREE!!
Are there
foods I miss? Well, there are,… but in most cases there is a gluten free
substitute that is as good, or better. And: GLUTEN FREE FOOD TASTES GOOD!!!
Links to brands I recommend:
Canyon Bakehouse bread -the BEST ever GF bread
Food Should Taste Good -excellent chips and crackers
also look for Freshetta Gluten Free Pizza, Tres Pupusas, Pacific soups, Van bars....
AND ALWAYS, ALWAYS, READ THE LABEL BEFORE YOU BUY!!!!
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