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We felt it important to share our personal stories. It
gives a bit of insight as to why we do this.
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Cara aka JCC
Hi! I
live in Wisconsin, am married, and have two daughters (11,
20) and a son (23).
My voyage into the world of gluten sensitivity began around
the year 2000, when three of my family were dealing with
varying health problems. Thanks to the Internet, and to
those I originally met on the BrainTalk Community forums,
my family's medical mysteries slowly began to unravel.
My young daughter "J" had been suffering diarrhea for a
couple of years, and had started showing some fleeting
neurological symptoms of leg weakness, leg drag,
staggering, eye lid dropping, lazy eye, and periods of limp
body "rag doll" fatigue. She had a couple episodes each of
slurred speech, difficulty swallowing, and loss of bladder
control. Over two years time her weight had dropped on the
charts from the 75% to the 25%. She was pale and had dark
circles under her eyes. She had rough red hand and wrist
rashes, and a recurring illness of a mosquito bite like
rash with vomiting.
We were finally referred to a GI, who considered celiac
disease as a possiblity. However, my daughter had only the
weakest of markers, an isolated positive antigliadin IgG.
We declined the biopsy we were offered because I had read
the work of Dr. Hadjivasiiliou and Dr. Fine by this point,
and realized there was more to gluten sensitivity than
celiac disease. So, whether a biopsy showed negative or
positive became rather inconsequential to us. We were
prepared for a gluten free diet trial either way. It
worked! We've never looked back.
Before long, we realized that gluten may also be a factor
in the other health problems my family was facing. I had a
history of Hashimoto's thryoid disease, and had recently
been diagnosed with B12 deficiency after three years of
cascading neurological and other symptoms. My celiac
related antibody tests were all negative, but I went gluten
free to support my daughter "J", and because of my health
history I believed it might help me. My lifetime symptoms
of GERD, gas, bloating, and frequent diarrhea are now gone.
Years later, out of curiousity, we did the genetic testing
for myself and my daughter "J". Neither of us carry the
main celiac disease genes, but both of us have double
copies of HLA DQ1, associated with gluten sensitivity, but
rarely celiac disease.
I also have an adult daughter "K" whose symptom list during
childhood includes: joint and bone pain, rashes and hives,
mood swings, frequent general illness, sinus and throat
infections, sleep disturbances, stomach aches, dry eyes and
mouth, frequent canker sores, defective dental enamel,
muscle spasms, back pain, seizures, chronic asthma, and a
variety of abnormal labwork. She also showed only an
isolated positive antigliadin IgG. She later tested
positive for pyroluria, a controversial condition among
mainstream medicine, which results in a vitamin B6 and zinc
deficiency, and is also associated with gluten/casein
sensitivity.
I have found answers for my family's health problems!
Networking the "medical underground" is where it's at. Good
luck on your own journey~