<<Disclaimer: Verify this information before applying it to your situation.>>
(This one is very long, but worth reading I think. She also included some
interesting attachments that I can email to anyone who is interested. I will
have to break this response into parts so that it can be posted. -- Sherri)
Our experience:
Believe me I understand and sympathize with the desire for diagnosis. It
does make life easier to have a currently recognized diagnosis. But here is
our frightening experience.
My 22 year old daughter, an honors nursing student, went though your same
scenario. At the age of 14 she did an elimination diet. With no understanding
of celiac disease and no information regarding the strictness of the diet she
voluntarily cut out major glutens and dairy products. At 22, she learned
about celiac disease in nursing school, cleaned up the contamination issues and
hidden glutens, even cutting out weekly communion bread. She was thrilled
to find that her digestive system worked better than ever in her life, and she
felt "normal".
After 6 months on the strict GF diet she became sold on getting a much
desired diagnosis since her improved health totally convinced her that she was
indeed "celiac". She suffered through a miserable 6 week gluten challenge. At
the end she received a negative Prometheus blood test and a "stone cold
negative" biopsy. (Her Enterolab test was positive). Also both her Prometheus
blood gene test, and the Enterolab cheek swab gene test both showed a double
copy of the DQ 2 gene. She has had clear symptoms of an unhealthy reaction to
gluten from her first cracker at age 8.5 months, and extensive family history
including a relative with diagnosed CD. Also, I have the DQ 2 gene and my
husband has the DQ 2 and DQ 8 genes. My husband, her father, has been sick
for 30 years with many symptoms including constant sores on his arms and legs
for the past 10 years. Most of our 5 sons had symptoms as infants and
children and are developing more symptoms in their 20's. (My husband tested low
positive on a tTG and then across the board negative 6 months later on a full
celiac panel that included a second tTG. The rest of us,7, all tested
negative on full celiac blood panels in spite of many symptoms.
So our daughter's miserable gluten challenge was for nothing. No diagnosis.
The dr was convinced that in the face of both negative bloodwork and a
negative biopsy, she was not celiac, so the possibility that the challenge was
not long enough was ruled out. Thankfully her dr did not rule out non celiac
"wheat" intolerance. He told her that she wasn't celiac but since she reacts,
to remove "wheat" from her diet until the symptoms disappear. So she started
back GF except for weekly communion bread.
However, in the process of the challenge she experienced not only major
digestive discomfort, but also she said to me several times toward the end of the
challenge, "Mom, you just don't know." I thought she was referring to
digestive discomfort, but in retrospect it became clear she was experiencing a
major depression. After she went back gluten free (except she was taking
gluten containing communion bread), she got worse, with her emotions appearing to
bounce (at first) and then went down, and even a year later she has not been
willing to describe all the symptoms she experienced. When I later described
her symptoms to a doctor in our family he suspected a serious illness. She
had obviously been very sensitized by a long challenge after being off gluten
a long time.
I have learned in my research since this experience that the on/off effect
of,...the GF diet, then back to a gluten containing diet, and then GF again
can cause damage. There is long term mortality research suggesting this
phenomena. (Footnote # 3)
Three months after she resumed her GF diet, I continued to see many signs
that she was in trouble, with admitted repeated "black hole emotional crashes".
I had already corresponded with her celiac dr, who suggested she come back
in to see him. She seemed too sick to think clearly regarding this matter.
She wasn't interested in seeing a dr at that time, and insisted on taking
communion bread "since she wasn't celiac". I finally asked our church elders
to allow me to bake a GF communion loaf. They agreed and our daughter
experienced a dramatic and obvious turnaround immediately. Within less than 3 weeks
she was able to describe to us how much better she felt and she, a last year
nursing student, attributed her improvement directly to the communion loaf
change.
That was last October. She has been more fragile overall since, tires more
easily, and had to scale back her expectations of herself and her schedule
for the remainder of the college year. She was careful with her diet. However,
in February, following current celiac literature, she baked cookies with
wheat flour for friends at college and even though she did not eat them she
experienced another emotional crash.
This spring she began trying other minor probiotic therapies hoping aid the
healing process.
She just graduated college in May with honors, excellent reviews, and
degrees in Spanish and Nursing. We are pleased and relieved that she was able to
finish her schooling with flying colors in spite of her health challenges. We
took her on an R and R trip to Mexico after graduation and she has planned a
leisurely summer with plenty of R and R built in before she begins working.
She is planning further testing and investigating with various professionals
to aid the healing process.
Just recently however, she infracted and ate some Kix cereal in an very
uncharacteristically weak moment. She has paid the price in pain and digestive
upset, but it appears that she has not had the dreaded emotional crash she
experienced previously (after the gluten challenge). So we hope that time, the R
and R, and the other measures are beginning to heal her body enough to
prevent the worst symptoms when she does mistakenly ingest gluten.
Believe me, the gluten challenge wasn't worth it! If we had known that
celiac disease, as defined today, in fact only identifies a very small number of
the actual gluten intolerant population, we would never have taken such a
dangerous chance. She had been off gluten too long to go back. We can only pray
that her healing will be complete and permanent and that she has not
sustained lifelong damage.
I have personally heard many stories of misdirection, and levels of
depression and worse including bipolar illness from negative testing patients who
have on their own tried the GF diet with success. One patient I personally know
included the patient being hospitalized and in the patient's words "I was
crazy, thinking crazy thoughts") for a period of time after what amounted to a
long gluten challenge. That negative testing patient had originally responded
well on the GF diet after a lifetime of poor health. Now, after recovering
somewhat from the disastrous reintroduction of gluten, the patient is
experiencing serious prolonged health challenges for whatever reason, including
thyroid cancer, multiple sensitivites and most positively cannot touch gluten.
*Support summarization of posts, reply to the SENDER not the CELIAC List*
|
