on 7/19 I posted a thread here called Major Behavior Changes through DietSince that time we have had some changes and I wrote up our story in an article format. I wanted to share it with other moms in hopes that it would help someone else from such a drawn out battle for health.
To tell my story is really to share with you our ongoing journey…my
daughter and I.
When my daughter was born, I was blessed to stay home with her, nurse
her, care for her in every way possible to the best of the high
standards her father and I had set. She was born 9lbs and healthy in
every way. She nursed exclusively for the first 14 months of life due
to a gag relax that prevented her from eating solids. During her
nursing time, she did experience diarrhea and allergy ring as well as
rashes and dry skin. She had a plethora of bizarre rashes from birth
on, and after a while we stopped worrying. The doctors told us she
was fine and that the diarrhea was normal for a breastfed baby.
We tried not to worry.
When she was about 17 months old, weaned, and eating normal foods,
that is when her chronic battle of diarrhea started. My entire family
remembers the very day it started as we were on a two car 7 hour road
trip and we had to stop to wash her and her car seat at a fast food
restaurant, and then continue to stop frequently there after. Her
diarrhea was very bad for 2 months straight, some days adding up to 15
stools a day.
Her doctor said she was fine and to put her on the BRAT diet and keep
her hydrated. He told me not to worry.
Bathing her every thirty minutes and seeing foods come out the way
they went in…well needless to say I WAS worried. This was certainly
not normal. This went on for 2.5 years off and on. I took Dairy out
of her diet and then Soy. That seemed to help quite a bit.
Eventually I cut Juice out of her diet per doctor's recommendation
(too much sugar) and that also helped, but nothing was a "cure".
In addition to the diarrhea, she was exhibiting several autistic
traits, yet did not otherwise appear to be autistic. These included
not wanting to be touched, not making eye contact, playing alone, and
most notably, playing with fecal matter. She took every opportunity
she could find to play with feces and there was just nothing I could
say or do to stop her. Doctors would not help me and I was laughed at
by a handful of professionals. Some nurses said this was normal. I
have yet to meet another mom who had this go on for 2 years. I
question how "normal" it really was.
In desperation to get help with the poop messes, I searched the
internet with the help of my Mother in Law. All we could find on the
subject was Autism. That is when we stumbled onto the Autism Diet of
no gluten or dairy. It sounded crazy and impossible at first, but
trust me…I was beyond desperate.
We took all gluten out of her diet and for the first time, her
diarrhea stopped. She actually had some normal days of BMs and we
were all so joyful! After two months we re-entered the gluten and
within a couple of months she began getting very sick again and the
fecal play started again as well. In desperation we went on our own
for some controversial blood work through Immuno Labs. We removed all
the recommended foods (which included the gluten containing grains,
dairy, and soy). Our daughter transformed again and she blossomed!
She stopped doing the traits that appeared autistic to us previously,
and she became a social girl. She started hugging her grandparents
and sitting with them to read stories. She was happier. She finally
felt good and it breaks my heart that it took me 3.5 years to get her
to that point.
I'd like to say that was the end of it, but she still had weekly
attacks of mild diarrhea and some random spurts of autistic behaviors
as well as some more ongoing traits. It was at this point, when she
was 4 years old, that we implemented the principles of the Specific
Carbohydrate Diet. We did not go steadfast into this diet, but we did
make some huge changes and that was exactly what our daughter needed.
It was the final push in combination with her gluten free diet that
gave her freedom. We only had to do this for 6 weeks, at which point
we were able to reintroduce all the foods that had previously bothered
her, with the exceptions of gluten and dairy. She also potty trained
during the day as she finally was able to go not just days without
diarrhea, but weeks! In fact, it has been over two months without any
problems with the exceptions of two occurrences of gluten in foods
that made her quickly ill.
To Autism and Back: First, let me say that I have struggled with
being able to publicly tell our story because I really feel like it is
not "our" story as much as my daughter's and that it should be
somewhat private for her. However, as a mom who reached out to every
possible medical establishment for help, and received none, I know I
would have been blessed to have read a similar story 3-4 years ago. I
would have been overjoyed to know that I was not alone and to have
some ideas of new things to try. That is why I am sharing all of this
now, in hopes it can help another mom and another child so that they
don't suffer for 3 or more years before finding the balance.
Our daughters autistic traits included:
• Stim-ing – at a young age, she would sit and play with the same
figures, lining them up and turning each of them precisely to the same
direction or degree. After that, she would do it again, moving them
slightly again. Now, lining up is normal toddler activity, but to sit
for 2 hours straight lining up the same objects is not. She did this
daily and I did not know, at the time, that it was a sign of anything.
• Anti social – she did not like to play with other children, nor did
she want to be touched by anyone short of her mother. She was never
an affectionate child, never wanted to be rocked, cuddled, kissed.
She preferred being alone and valued her space. As I was a shy child,
I did not realize this was a sign of anything either.
• Very smart-She was putting together advanced 3D and jigsaw puzzles
just after her first birthday. Her ability to sit and work on puzzles
in her toddler days astounded most adults, many of whom would struggle
with the very same puzzles she whizzed through with no effort. In
addition, she knew her letters and numbers at age two and would recite
what she saw on buildings and books. We read to her daily and just
thought she was very bright.
• Fecal Play – this was the hardest one for me to deal with, as her
mother. She went through a very long period of playing with her poop.
She would smear it, play with it, and cover an entire room in
minutes. Because she had chronic diarrhea for the 2 year time period,
there was always ample fecal matter for her to play with. She did not
think it was wrong or yucky and she seemed to enjoy her play. I could
not get through to her on this and I tried every approach as well as
consulted with a handful of professionals to inquire for help. Of the
professionals here is what they told us:
-Her pediatrician said to tape her diapers shut and offered no help.
-Her Occupational Therapist was wonderful in helping us try new
things, but nothing worked. She suggested considering Aspergers and
recommended us to a behavior specialist.
-Her GI doctor did not address this and seemed to avoid it when I
brought it up.
-The second GI specialist also did not give me any response, idea, or
suggestion for help with this.
-The psychologist did not have any answer for her either, except to
say that perhaps my daughter was Aspergers or some form of autistic.
-The teachers did not know what do say, short of go talk to a psychologist.
-We even went to multiple chiropractors who recommend blood work to
look into her diet and chiropractic care as well as occupational
-Finally, the MD who specialized in learning disorders diagnosed our
daughter Autistic. Still with all the help I sought, no one could
give me an answer to this ongoing problem, until we found out about
• Sensory issues: she had phases of ongoing sensory issues such as
oral and joint compression needs. She would chew and eat many
inedible objects. Some examples, she would eat paper from books, she
would chew through her clothing while driving in her car seat, she
would tear apart children's chew toys and then attempt to eat the
plastic. She chewed on anything she could fit into her mouth. We
sought guidance from an OT who helped us find appropriate means of
redirecting, but we could not stop her from chewing.
• Poor eye contact as well as a "trance state" of non response when
being spoken to quite often (although not always).
• Inability to potty learn. Didn't day learn until age 4.5. Still
working on night learning.
Now, you would think with all of this that I would have conceded that
my daughter was autistic, yet I could not believe it to be true. I
just felt the chronic food related problems that were causing her
diarrhea must be connected to these behaviors. I could see her
through this and we were not about to give up. Because we didn't give
up and listen to the poor advice of doctors who told us to ignore her
diarrhea up to age 6! Because we chose to help our daughter and be
her health advocates, she has NONE of those traits of autism any
longer. Not a single one, with the exception of night potty training.
Within weeks of being gluten free, she became more social and it was
well received by her grandparents and loved ones. Her eye contact
became better, her sensory issues lessened and many disappeared. Her
desire to sit and line up objects vanished. Her puzzle working skills
were left behind for regular kid type play. Her insistence to play
alone at school dissolved and she began socializing and actively
playing with the other children. She went to autistic and came back to
herself through the effects these foods had on her body and mind. I
do realize that this is not the case for many autistic children, so I
don't often talk about this or about her diagnosis to others. I do
not want to get the hopes of people that their child can be cured of
autism. I don't believe my daughter was truly autistic, but I do
believe that gluten, the poison that it is to her, caused her to act
In our food struggles we have found that elimination diet works the
best for us, as the blood and stool tests available still left us
questioning. I attribute her inability to potty learn earlier to the
three + years of diarrhea and damage that caused to her body and
mental ability to "feel" what should have been normal. I took her to
a GI specialist at age 4 and he told us that toddler diarrhea could
easily go on up to age 6. He discredited all of our past experiences
and her obvious and severe reaction to gluten. It was incredibly
disheartening. In his medical and clinical world, there is not room
for nutritional analysis and the study of food sensitivities and that
is why we, as parents and people, are forced to do these things for
Some quick good news about going gluten free…it has changed the way we
all eat and we eat much healthier. My four year old eats better then
any four year old I have ever met. She eats a balance of meats,
grains, beans, rice, fruits, veggies, and nuts. She is doing much
better on these homemade foods then her classmates who live on mac and
cheese, cheese crackers, and juice boxes. I believe going gluten free
has given us all an opportunity to get on the healthy track and to
give our girls a positive start for eating right in life. But I am
biased…Going gluten free saved my daughter from ongoing pain and
illness. I think it was the smartest thing I have ever done for my
child and I count my blessings daily.