When I was a kid life made more sense than it does now. Obviously I
would grow up, maybe get married but probably not, go to college, get a
job and that would be the end of my life as a grown up until I retired.
My parents didn't have much money so earning an income was important to
me, my riches would allow me to go on fabulous vacations, wear the kind
of clothing my dimwitted parents couldn't see that I needed and it was
clear that I wouldn't have much to do with my family since they were
going to function at a different level than I did.
Today I read a quote by the Dalai Lama which states that people
sacrifice their health for money, spend their hard earned money chasing
after health and die not having lived at all. I'm paraphrasing slightly
but you get the idea and I had to read that a couple times before I
realized that for most of my life I haven't focused on what was most
important to me. At the end of September my youngest daughter's teacher
gave me a book that will probably change the life of my oldest daughter
Two weeks ago my oldest daughter started a gluten free diet. I took a
lot of heat from various people I'm related to who all have her best
interest at heart. My mother was not supportive initially, I don't have a
lot of insight into the way her mind works which makes it hard for me
to understand her. She tends to live in a world of absolutes and she has
the kind of faith that is ummovable. While people in my family know
that celiac disease is a real condition most either don't believe that I
have it or have any sort of inkling of what living with a chronic
condition is like.
From what I've read if you have an immediate family member who has
been diagnosed with celiac disease you have a higher risk of having it
yourself than if no one in your family has it. If I go over to my
mother's house she'll offer me chicken noodle soup or homemade bread, I
don't think she's ever taken the time to do any research on celiac
disease or any other of the conditions I have. This has been a source of
frustration to me for many years. My sister told me I need to get over
it because my mother is who she is, she's never going to change and I
have to make peace with the facts but I want the type of support that I
feel I should be able to expect from a parent.
Once you have a condition it is hard not to go around diagnosing
other people. My husband wonders why I have to make things be wrong with
other people. When I first proposed a gluten free diet for my daughter
he was opposed. Gradually he allowed me to have control over what she
ate and after reading the book What's Eating Your Child, speaking with a
nurse practitioner, a pediatrician and my children's teachers I decided
to remove gluten from my oldest's diet and both gluten and dairy from
the diet of my youngest.
My friends have all been very supportive even going so far as to
request a list of foods my daughter needed to avoid when she went to a
sleepover at her friend's house. People have brought in special birthday
treats that she could have and my daughter's friends have also shown
that they can be empathetic. The great news is that after two weeks of
being on a gluten free diet my daughter's teacher reported a significant
change in my daughter's behavior and organizational skills. Two weeks
ago she had three missing assignments in one week. Since going gluten
free she hasn't missed an assignment.
At home I've noticed that she has been more mellow. My husband says
that she is more subdued and downtrodden so I guess it's a matter of
perspective. He says I only see what I want to and I have to account for
personal bias which is why I've enlisted the help of my friends and
teachers at school. My daughter's volleyball coach said it was like
having a different kid on the team and a friend of mine said that she's
noticed that my daughter has been treating me much better.
At the slumber party my daughter told some of her friends that she
thinks the new diet is working but she doesn't want to tell her mother
since I might make her stay on the diet for the rest of her life. She's
lost a couple pounds which is fairly typical for people who go through
this kind of a dietary change. I've added some supplements to her diet
to help compensate for the nutrients she might be missing out on, our
nurse practitioner said that if my daughter is gluten intolerant she
will eventually start absorbing food better. She also recommended blood
work after six months of the diet just to make sure that her vitamin and
mineral levels were within normal ranges.
My youngest hasn't done as well although she's only been gluten and
dairy free for a week. Today she ate some Cheez-Its at school and
tonight her sister said that she was complaining that her stomach hurt.
When I questioned her about it she said her sister said that so they
wouldn't have to go into the grocery store with me. I'll probably never
know which one of them is telling the truth, I'd be surprised if my
daughter could detect gluten after only a week without it however I can
tell if there's gluten in a pill so she may have clued in on what that
feeling is like.
Not long ago I thought I was going to go back to work. I've been off
for over a month and instead of getting better it seems as if I've
gotten worse. My vitamin B levels are so low I can function
sub-optimally only as long as they're coursing through my system. Third
world deficiencies like pellagra and beriberi are now terms I'm
acquainted with and it probably sounds crazy to be taking mega doses of
these things but I'll wake up in the middle of the night because I don't
have enough energy to keep sleeping when the B vitamins run out.
I feel very alone and very afraid. I'm scared that I won't be able to
go back to work and it might sound cool to be unemployed but I have
bills to pay and it is not a fun life to be tied to your kitchen,
bedroom and bathroom. That my oldest has improved on her gluten free
diet most likely means that she is gluten intolerant and will have to be
on a gluten free diet for the rest of her life. I'm going through the
same denial, grief, rage that I went through when I found out I had
celiac disease. Most of my day is figuring out what I can serve to the
girls that will nourish their challenged bodies and be somewhat
palatable to them.
Sugar is normally scarce at our house however I've been more relaxed
about that since I know from experience that giving up gluten is tough,
even for adults who understand why they might need to determine if going
gluten free will help them or not. As far as I know my oldest has not
cheated once and I give her credit for that since this is an extremely
difficult diet to follow. My daughter wants to take hot lunch on
October 31, 2011. Our nurse practitioner said that going
gluten free for two or three months would be better than a single month
but I think I'm going to let her eat corn dogs and buttered noodles
because I think she's going to feel rotten and I'd rather deal with this
sooner rather than later.
Some people have voiced concerns over my daughters not getting the
proper nutrition. Another family member thought that if the focus was
always on food my children would become anorexic. What I've seen has been encouraging and I wish these
people would understand what it's like to live a life where you never
really feel good. I'm like my mother in that once I get an idea it's
hard to dissuade me. I'd like to think that I'm slightly more flexible
than she is, I've researched this, spoken with others about it and all
the changes I've seen have been for the better which is encouraging.
Right now I feel as if this is too much for me to handle. I'm
overwhelmed, exhausted and praying that some day I will have the energy I
need to make it through an entire day without a nap. I'm going to give
myself a little credit since I have taken two children off of gluten and
the transition went much more smoothly than I thought it was going to.
The girls still have a ways to go however I'm hopeful that at least my
oldest will continue to improve if she stays on the diet. I don't know
that gluten is as much of an issue for my youngest but the other night
she came home from a friend's house where she had spaghetti and her
stomach was bloated and distended so I guess we'll have to see how
things work out for her.
One strange thing has happened and I'm not sure what I should
attribute this to but the girls got their ears pierced on the same day
and while my oldest daughter's healed with the passage of time my
youngest daughter's ears are still not healed. Since she's gone dairy
and gluten free the minor congestion she's had is gone and her ears have
suddenly started healing. We've been doing the same routine so that
hasn't changed. Slow healing wounds can be indicative of a larger
underlying problem and while I don't want to over-diagnose I think it's
interesting that her ears are getting better.
I honestly don't know how I'm going to make it through the rest of my
life. I'm exhausted, out of breath from minimal exertion and I want to
think that my body is so worn down that it needs time to heal but this
is getting ridiculous. I go back to bed after I get the girls off to
school. I wake up around eleven-thirty, eat lunch and putter around
until it's time to pick the girls up. I can tell my biochemistry is way
off but I don't know what I can do other than what I've been doing. I'd
like to say that a couple people have sent me messages both here and on
. For their continued support I am grateful.
Wishing you well,
P.S. I still remember the first time I held my perfect little girls.
Whenever people tell me they look like me I keep thinking that I don't
always deserve them and they deserve much more out a mother than I've
been able to give them. This guy I know told me to stay home and not worry about the money. Hard not to think about it but I have seen such improvement just in the short time we've been doing this. The other day my daughter was crying because she wanted a slice of pizza; I told her that I wanted what is best for her and parents don't always know what is best for any of their children. Wish I had a better answer than that to give her.