While I could call this Jessica hurts her back and has trouble
recovering from her allergic reaction, I'd like to share our visit with
the GI doctor that we met yesterday. Since my back was not feeling well I
may be less charitable than usual, but the visit was pretty much a
waste of time from our point of view. The medical assistant asked us the
most questions. I liked her even though she kept calling the girls
Princess. She spoke frankly about embarrassing topics like bowel
movements and stained underwear, telling my daughter that these types
of conversations were normal around the hospital. They weighed Jill,
took her height and then went into a small room where she asked more
questions about her health history. Some of the questions were standard,
and I'm sure these are normal questions they ask everyone, but it has
been twelve years since Jill was a baby and I have no idea when she
pulled herself to standing, or rolled over for the first time without
checking my records.
When the doctor arrived he sat down and asked us why we were there.
We explained that Jill's pediatrician had recommended a visit after
bloodwork indicated that she had celiac disease. He consulted paperwork
in front of him and nodded before explaining that he would like to have
her scoped. In order for an official diagnosis to be handed down three
things need to happen. The patient must positive labs, the patient needs
to respond to the gluten free diet, and the patient needs to be scoped
in order to confirm that intestinal villi show signs of the disease.
That was his position and he liked it, repeating it at intervals in
different ways so we would understand that without the endoscopy there
would forever be a cloud hanging over her as to whether or not she was a
celiac despite his statement that with family history,
you're at an increased risk if a first degree relative has autoimmune
conditions, and the labs. Supposedly the third step is a safety net of
sorts in case patients were unsure if their symptoms had improved or
their labs were falsely positive.
Most of the time he spoke to my husband and he didn't glance at any
of the paperwork we had completed, preferring to ask us questions
himself. I didn't have a real problem with that at first, but I was
under the impression that he hadn't done any research on Jill before he
walked into the room and that really annoyed me as the hospital had
repeatedly called us to make sure that we were going to be at our
appointment and were going to arrive early to complete said paperwork.
He said that sometimes people need to hear that they have a condition
after a test like an endoscopy to change their behavior, and there was
the possibility that Jill who wants to be eating what everyone else does
will suddenly adhere to a strict gluten free diet after the scoping, if
it came back positive. When I explained to her that the scope was an
invasive procedure he waved that away by explaining that she would be
out the entire time and not feel a thing when she woke up.
We spoke to his nurse who reiterated everything the doctor had just
said. We could take a class that would teach us how to live the gluten
free life, but unfortunately it is only offered during the week at one
o'clock so we would have to pull Jill out of school again to have her
attend this class. Jill was crying during the appointment and on the way
home we said that she had a choice to make. She can take the gluten
challenge, and possibly get scoped if we decide to go ahead with that,
or she can continue the way she's been eating. We did warn her that if
she takes the challenge she will need to keep eating gluten for the
entire month so this scope will be accurate. She wanted some time to
think about it so we said that she could have until the end of today. I
was pretty sure she would pick to have it in her life again which is
what she told me after school. My husband and I are hoping that once she
starts eating it regularly her symptoms will return, she will feel
awful, and others will see what I observed back when we first suspected
that it was an issue for her.
Naturally I'm apprehensive about this, but I think she needs a hard
reality check and maybe it will be like some people who need to get mad
drunk on a certain type of alcohol before they avoid tequila or whatever
their poison of choice was. I don't think it will take long before she
starts noticing that she doesn't feel well and this challenge means she
eats as much gluten as she possibly can and has something with it at
every meal so it will be pretty brutal for her and for us. I don't want
her to get sick or have her nose start bleeding again. We will obviously
intervene if things get really bad, but I am not looking forward to
this next month. I already feel like garbage. This means gluten is back
in my house when I can't have it, and I can't afford to ingest any
accidentally since I know what happens when I have it, but if this is
what it takes to get her to realize that this is damaging her health and
making her feel like crap, then I guess that's what we're going to let
her do. She's thirteen and we can't constantly monitor every bite of
food she has.
We went to an Indian restaurant last night and I was really proud of
my youngest daughter when she said she would rather just stay on the
gluten free diet without taking the challenge. That kind of resolve is
admirable in an eleven year old and we told her that the decision was
hers to make either way. When I asked what the difference was between
gluten and treats she said that treats were sugary snacks we wouldn't
normally have and gluten could be a piece of toast or a muffin. Both
girls have shared specific problems they've encountered when they eat
gluten. Jill's hands and feet itch. Jane says that her stomach doesn't
feel good and I'm actually more interested in finding out whether she
has celiac disease than confirming that Jill does as her test came back
negative so we don't know if that was her being more compliant than
Jill, or actually not having the disease. I explained that things were
not going to change at home regardless of what the test said, and I wish
I would have thought to ask the doctor what he would say if the scope
came back negative as when we were in the room he said that his personal
opinion was that Jill did have the disease.
Probably the most disappointing thing about the visit was the lack of
hope. There was no talk about Jill's growth and development, no real
nutrition information other than the mention that sometimes celiacs are
anemic, and no methods of coping for us or for her other than to suggest
this class. He rarely spoke to or looked at her when he was speaking,
and I felt like he was annoyed that we were against the scope when
protocol consists of the dietary changes, the labs, and an endoscopy.
The other day I saw a Twitter chat about how upset some conventional
doctors were that people flocked to those that they considered quacks.
When we were at the gluten free bakery we ran into a woman whose son had
food allergies and other health issues. By working with him and
tweaking his diet she was able to introduce eggs back into his diet, and
that was more of what I expected from a consult at Children's Hospital.
I wanted to hear that they were going to assess what her different
vitamin and mineral levels were, and get a dietician to work with her so
she could see what a healthy, balanced, gluten free diet was. I also
expected to hear some words of encouragement that we as parents were
doing the right thing by questioning a procedure that was quoted as
being between three and five thousand dollars.
A brother-in-law of mine works in a building across the way from
Children's Hospital and he said that when they talk to their patients
about procedures they are very blunt about what it will entail so there
is no confusion about what is going to happen to them. I understand that
you're going to treat children differently than adults, but at thirteen
and a half we don't need to sugar coat things for Jill and as someone
who has been scoped, I can share my experiences with Jill. It was not a
fun procedure, I spent thousands of dollars having it done, and came
away with no new information or any kind of next step, where do we go
from here if I don't feel well? The doctor didn't mention vitamins and
the nurse was pretty useless when we talked to her about an elimination
diet for the food allergies. I want the healthiest happiest kid I can
get and I left Children's Hospital with a sense of having been run
through their system. I respect the level of education that these people
have, but as far as my daughter goes, I was less than pleased with our
consult. I felt like I was a naughty child, or not quite bright enough
to understand that if the protocol says to scope, then everyone should
get scoped regardless of our concerns.
The good news is that I've taken it upon myself to be an advocate for
myself and my children and I'm not going to let that experience stop me
from networking and doing my own research. Food can be tasty,
nutritious, and even fun while you're eating gluten free. As far as
overall health goes, I'm happy that my children are no longer the
drugged up babies that we used to have here at home. We no longer make
as many trips to as many specialists, the eczema and ear infections are
gone, and we have our challenges, but considering that my children used
to be on quite a few prescriptions including around the clock nebulizer
treatments it makes me glad that they are able to keep up with their
classmates in many areas. They are petite and I am concerned about Jill
being behind developmentally, but apparently I can't expect to get
answers from her GI doctor so I'm either going to find a new one, or I'm
going to do more research and see what I can uncover, and maybe that
means reaching out to some of the dieticians I know and putting a
program together for her. I wish they would have gone through some of
the psychological ramifications and talked to us about eating disorders,
but they didn't and I'm not going to waste any more time there. So I
have a plan and that makes me feel better than I did.
The outlook is not that bleak. She eats a wide variety of foods and
she's a very smart person who sometimes doesn't get the grades that her
parents feel that she should. She's loving and fun and we wish she would
shower more often, but our main concern is that she knows she is loved,
cared for, respected, and that her opinions matter. I don't want to
raise a child who keeps cheating on her diet, and I do not want an
eating disorder to crop up if she doesn't have one already so if giving
her gluten for a month will set that issue to rest, then I guess that's
what we're going to do for her, because we do love her and no parent
wants to see their child deal with the rashes and other issues that
accompany a major digestive problem. Hopefully my back issues will get
resolved soon, and I'll do my best to keep track of her progress as the
gluten challenge continues. We are looking into some exercise programs
for her since she isn't in any sports and we no longer have a YMCA
membership. We want her to be active and to realize that there is an
entire world out there that is hers to explore regardless of what kind
of dietary restrictions she may have. I hope this isn't as painful as I
believe it will be for her, but then again, some lessons can only be
learned the hard way.
Until next time,
Jess