Trauma and Celiac Disease
Published in The Nexus Newsletter, NASW Oregon Winter 09/10
A couple of years ago I had a patient who came in and announced matter of factly, “I had a brownie yesterday and then I felt really suicidal”. For a moment, my conventional reaction was to think she was losing touch with reality. While this patient did have an extraordinary amount of abuse in her childhood she was one of my least dramatic, most levelheaded clients. Usually she understated rather than overstated everything. I took a breath and inquired more. She revealed to me how she had been managing her anxiety symptoms without medication all these years (due to an extreme phobia) with her diet. She strongly suspected she was intolerant to gluten. She had noticed that when she ate gluten her blood sugar levels would fluctuate, she would get immediate and extreme fatigue, and her mood would change. This was a lightbulb moment for me. Nothing in my training had prepared me for the possibility that foods could affect mood (other than the obvious chocolate and caffeine ‘lift’).
In my subsequent research I found that not only could foods negatively affect our moods but that there was a genetic disorder called celiac disease that could be responsible for my client’s unusual reaction. Celiac disease is not contagious. It is a genetic disorder that causes gluten to erode the lining of the intestines. Literally, it flattens out the nutrient absorbing villi in the small intestine causing the body to stop receiving the nutrition needed to function normally. Once thought to be a relatively rare condition, it was known as “wasting disease” because the victims would lose weight steadily until they died of malnutrition. That mode of thinking is now outdated.
Recently, the medical profession has been doing more research on celiac disease. They have found that one percent of the general population is affected, 1 out of 133 people of all races and nationalities, making it the most common genetic disease in the world! Only five percent of people with this disorder have been diagnosed correctly; that means 95 percent of those with this disease are untreated and continuing to aggravate their condition by simply eating foods with gluten in them. In people with Swedish or Irish ancestry the rates of celiac genes reach as high as 30%!
Here are some of the latest facts on celiac disease:
1) Research indicates that eating gluten when living with celiac disease negatively affects mental health particularly in the areas of depression and anxiety.
2) This research is so new in the U.S. that most health professionals are not even aware of these connections, not medical doctors, nurses nor therapists!
3) The celiac gene is switched on by trauma (physical and/or mental)! People can be walk around with the gene all their life, doing fine, until they go through an extreme event at which time eating anything with gluten starts to destroy their intestines.
4) Celiac does not just manifest as a wasting disease. A client can be obese and still have celiac in which case the body absorbs calories but not nutrition (and the client consequently may feel hungry all the time).
5) Only 50% of undiagnosed people who turned out to have celiac disease had gastrointestinal symptoms!
One does not need gut pain to have celiac disease. If you suspect that your client (or even you yourself) might fall into the category of celiac disease advise them to follow up with a doctor or naturopath for testing.
Doctors recommend an intestinal biopsy for definitive diagnosis because the treatment for celiac disease has such a dramatic impact on quality of life. From a social work perspective there are a couple of good reasons not to get this test. One is that this somewhat invasive test may be highly triggering for patients with a history of sexual abuse. The other reason is that the results of this test become a pre-existing condition for insurance companies. However, if the test is genetic, and there are good genetic tests to assess if one carries the celiac gene, federal law states that these results cannot impact one’s ability to get insurance.
Alternatives to the intestinal biopsy include a blood, saliva or stool test. These have varying degrees of accuracy. The saliva and stool tests are readily available through naturopathic doctors. Or the client could just stop eating gluten for a while (3 days to 2 weeks) and see how they feel. In severe cases, there is an immediate clinical validation because they feel so much better.
Gluten is found in many foods, not just wheat. Going to a website such as www.celiac.com can provide much needed information about living with celiac disease. Eating the smallest amount of gluten (even 1/8 of teaspoon or a few crumbs off the butter dish) can trigger the intestines to self-destruct so it is important to completely eliminate gluten from the diet for the client that has this disorder. There is no other known treatment at this time.
Living well with celiac disease requires enormous commitment on the part of your client who will need to learn to shop, eat, cook and dine out differently. Therapy can be of tremendous assistance in helping such clients move through a grieving process in losing the ability to eat what has undoubtedly become some of their favorite foods. The good news is that Portland, Oregon is one of the very best places in the world to be gluten-free with many restaurants offering gluten-free menus. There is even a gluten-free bakery in the Hawthorne area! .
The story with my patient had a happy outcome. She became much more stable and empowered by not eating gluten. She has not been suicidal since. If your client has celiac disease triggered by trauma, life without gluten will be a very small price to pay for health and long-term wellness. And you might even save someone’s life!
Marrying Policing with Mental Health Knowledge
In My Opinion, The Oregonian newspaper on November 27, 2009