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. You can call us at 408-733-0400. 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 and I am always delighted to answer your questions.
To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOWMedical Center
Co-author of “The Gluten Effect”
Author of the e-Book: “Gluten Intolerance – What you don’t know may be killing you!”
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.