When I originally
heard about this research study, I will admit to feeling a bit depressed and
confused with the reported results. Certainly, our goal when working with
people who have celiac disease is to make a diagnosis as soon as possible. We
know that the longer you have undiagnosed celiac disease, the higher your risk
of dying from all causes, as well as increasing your risk of suffering from an additional
autoimmune disease (remember that celiac itself is an autoimmune disease).
Why then would it be
found that individuals who are diagnosed with celiac disease in childhood have
a 3-fold increased risk of death occurring primarily from suicide, accidents
and violence? [Note: malignancies (cancer) and cerebrovascular disease (e.g.
stroke) also played a role.] On the other hand, individuals who are diagnosed
with celiac in adulthood have a smaller increased risk of death, about 38% and
primarily from cancer of the GI tract and lymphoma - still an increase over
their celiac-free counterparts, but not as marked an increase as those
diagnosed in childhood. What occurs for this to happen?
Let’s look at the
research in more detail: Two hundred eighty-five children and 340 adults
diagnosed with celiac disease in childhood and adulthood respectively, were
followed until death, loss of follow-up (they lost track of them) or up to
December 31, 2004. This was the first study of its kind with such excellent
long-term follow-up which allowed the researchers to really discover the life
course of these individual’s health status as compared to the general
population.
As mentioned above,
all-cause mortality more than 5 years after diagnosis was increased threefold
in children compared with only a 38% increase in adults. One thought was that
the increased mortality in those diagnosed as children was due to behavioral
change associated with coping with a chronic disease. The authors referenced
some studies that showed children with chronic diseases to more likely be ‘risk
takers’ than their healthy counterparts.
The first thought I
had was that these celiacs who were diagnosed as children were not adhering to
their diet. Since the majority of the excessive number ofdeaths in this group
were from accidents, suicides and violence, it makes sense that poor adherence
to a gluten-free diet was a potential culprit. Gluten affects the nervous
system and hormonal balance, so years and years of poor gluten-free adherence could
very well result in depression or other mental health changes that could result
in the types of mortality seen in this study. The authors concurred that was
likely a factor and stated that “poor adherence to a gluten-free diet and
depression or other psychiatric morbidity are likely to be associated. Once a
psychiatric problem exists, there is a ‘catch-22’ of reduced compliance –
therefore one feeds into the next. The others also stated that “better dietary
adherence might improve any depression or other psychiatric morbidity and make
self-harm less likely.”
It’s a delicate
matter and one that any parent of a celiac child or a child with any chronic
disease must address: How best to keep them healthy, following the dietary
regimen that is prescribed AND happy! Is accomplishing all three a Herculean or
near-impossible task? I don’t think so. And having been working with patients
for well over 20 years plus having three children of my own who are all gluten
intolerant, I think I can speak with some authority on the matter.
Here are my
recommendations:
1.
Whether
you are an adult or child diagnosed with gluten intolerance, you must be
properly educated. This is not a light matter or a diet that you can follow
when you’re ‘in the mood’. This is a life-long commitment that, while
difficult, is well worth the effort it takes. Until you are properly educated,
you won’t take the needed steps that are required to alter your lifestyle
around your gluten-free requirements. As the parent of a child, if the child is
too young to appreciate this, then you must be responsible for everything that
goes into their mouth. Yes, I know that’s a big deal but it is your
responsibility nonetheless to handle caretakers, teachers and parents of
friends. I did it for all my children and it was worth it.
2.
A
gluten-free child necessitates a gluten-free household. I know, you’re not
happy about this, but if it makes a difference in your child’s long life vs.
premature death, then obviously there is no argument. This is my opinion based
on working with many, many patients, not to mention raising three children with
gluten intolerance – so let me state that at the outset.
But
when I think about what children least enjoy, high on the list is ‘being
different’. Certainly well up on that same list, for I think most of us, is
‘feeling deprived’.
I
think you’ll admit that being the ‘only’ gluten-free member of a household who
watches everyone else in the house eating gluten when you can’t, is a
depressing proposition. Family members who are definitely deemed safe to eat
gluten can do so on their own, when they are not in the presence of the child.
When the family is together, it’s needs to be a gluten-free zone that everyone
puts on a happy face about. It’s not going to help to have a gluten-free household
if a sibling is complaining about having to follow the diet in front of the
gluten-free child.
When
going out to eat or going to parties, you’ll find as a parent that you’ll do a
better job of preparing your child’s food if you know that you and the rest of
the family need to be prepared as well.
I
think it’s critical to openly discuss why the child is gluten-free and how
one’s health can be adversely affected by gluten. I raised my children to
openly discuss gluten intolerance and the result was that they rarely felt
deprived, plus they frequently diagnosed friends and their families with gluten
intolerance! It was impressive how often they referred unhealthy friends or
their family members to the clinic who indeed ended up having a gluten problem.
The
big moral of the story is that if you’re gluten intolerant you’re not ‘weird’
or ‘different’. In fact you are in very good company. The only problem is that
most of the people suffering with gluten intolerance just don’t know it. So
don’t be silent about your condition, tell others. Educate everyone you meet.
Not only will you feel less alone but you will most likely help many others to
improve their health. That’s what happened in my family.
3.
Find a
clinician who works with gluten intolerant patients often and understands the
nuances of not only diagnosis of celiac but gluten sensitivity as well.
Further, the doctor should be versed in the critical secondary effects of
gluten that if not addressed will prevent full restoration of health. And
lastly the doctor should understand and be comfortable working with children so
that he/she fully educates them and their families to have a healthy and happy
gluten-free home.
I hope this was
informational. This is an extremely important topic and one that we take quite
seriously here at HealthNOW. We ensure that every child we see truly
understands the importance of following their diet and do everything possible
to see that the family is supportive in every way possible. If you have a child
with gluten intolerance or one you suspect is, or if your own health is not the
way you want it to be, consider contacting us for a free health analysis. We are here to help!
Our destination
clinic treats patients from across the country and internationally, so you do
not need to live locally to receive help.
I look forward to hearing from you.
Dr Vikki Petersen, DC, CCN, CFMP
IFM Certified Practitioner
Founder of Root Cause Medical Clinic
Co-author of “The Gluten Effect”
Author of the eBook: “Gluten Intolerance – What You Don’t Know May Be Killing You!”
Reference:
American Journal of Gastroenterology 2007;102:864–870. ‘Long-Term Mortality in
People With Celiac Disease Diagnosed in Childhood Compared With Adulthood: A
Population-Based Cohort Study’.
M
Solaymani-Dodaran, M.D., Ph.D., M.P.H.; J. West, M.B., Ph.D., M.R.C.P.; R.
Logan, M.B., M.Sc., F.R.C.P.
