Weird Gluten-Free Resources

When you have a baby--at least here in DC--you get signed up for a ridiculous number of solicitations.  (Or maybe I didn't see the opt out box).  Most of these eventually just peter out.  One, however, has followed me relentlessly, like a harmless stalker.  Parenting magazine lands in my mailbox periodically and it provides a good thirty-minute distraction.  This month the "snack" section caught my eye.  Allergen treats! For kids! And their parents!  The gluten-free snacks even looked delicious.   Most of these, celiac parents are already aware of--like Lucy's Cookies--but it is nice to see them mainstreamed.

DC Tops List of Brainiest State, But Bad News For Celiacs

DC has been named the top "brainiest" state in the America according to studies based largely on intake of DHA-fortified foods.  Interestingly, medical experts not associated with the study indicated that certain other tests should have been included in the index including, specifically, tests for gluten-intolerance.  Apparently, consumption of gluten by those with celiac is a factor in the development of dementia.  

The Littlest Lobbyist

Kyle Graddy has begun an early and hopefully effective career as a lobbyist.  The nine-year old boy, with severe peanut allergies, described his recent Washington, DC experience for CNN.  His eloquently simple description of the issues is maybe the most effective I have seen to date.

Magnesium Deficiency in Celiacs

I was reading this month's Oprah -- yes, I'm a little embarrased to admit it, but I read it for the articles! ahem--and noticed a tiny little reference to the glutens.  In a question and answer article on medical issues, someone wrote asking about magnesium and copper deficiencies.  The author of the question had been told by a dietitian that he had a severe magnesium and copper deficiency.  The expert responding to the question was skeptical, stating that it is rare to see the symptoms of a severe deficiency in these minerals in anyone not suffering from "Chron's disease or a gluten sensitivity".  Interesting.  Magnesium deficiency can cause serious symptoms, like frequent migraines, personality changes, depression and exhaustion.  Worth checking into, for sure. 

The Economic Benefits of a Celiac Diagnosis

I got a medical bill yesterday.  You know those notices you get from your insurance company that say how much the doctor's office charged for a service, how much you paid, and how much they are willing to pay? Before I was diagnosed with celiac, I used to get at least one a week.  I was going to the doctor so often, I was convinced that they had a little note on the chart saying: "This one's crazy--disregard all complaints."  I had gotten to that crisis point that apparently happens frequently for celiacs--my system was essentially shutting down.  In many ways, my life and health have improved exponentially following the diagnosis, yet I have health issues that remain because it took so long to find out what was wrong.  So I continue to get those medical bills.  Luckily, as I've said here before, I have pretty great health insurance.

Just based on my own experiences, I could have told you that undiagnosed celiac causes an enormous economic burden both for individuals and for the health insurance industry.  However, you do not have to take my word for it; the Journal of Insurance Medicine published a study back in March discussing this very phenomenon.  Dr. Peter Green of the Celiac Disease Center at Columbia University joined forces with CIGNA HealthCare and, using anonymous data collected from 1999 through 2003, compared more than 10 million managed care patients in the U.S.  They divided patients into four sub-groups: (1) newly diagnosed with celiac disease, (2) one symptom of celiac disease but no official diagnosis, (3) two symptoms of celiac disease but no official diagnosis, and (4) three celiac disease symptoms but no official diagnosis. After analyzing the medical resources utilized by each of the four groups, including amount and cost, they found that, after the first few months following diagnosis, the first group had consistently lower resource use and overall costs than the other groups. 

Clearly, the study is not perfect.  But how could this not make sense? Before diagnosis, those suffering with untreated celiac are sick.  The list of symptoms is ridiculous.  You have migraines, stomach problems (to put it mildly), extreme fatigue, skin issues, mental health problems.  It goes on and on.  Of course you are going to see the doctor, if you can.  And the longer you go with untreated celiac, the sicker you become.  It is an autoimmune disease; eventually it will wear your body out.  It has been associated with other autoimmune diseases, cancer, osteoperosis, chronic fatigue.  When you get to the point of other illness involvement, the medical costs are not going to go down.  And those costs are pervasive. 

The conclusion of this study was that early diagnosis would be economically beneficial to the health insurance industry.  Yes! An important point! The blood test that ultimately was responsible for my diagnosis cost them about $100 versus the many, many thousands that they had put out previously just looking for what was wrong.  But I would take it a step further.  Early diagnosis is economically beneficial to just about everyone.  Besides the pure health costs, imagine the work time that would not be lost for pointless medical tests, unnecessary hospital stays, care for family members who cannot be cared for by the patient.  When you get right down to it, considering that an estimated 1 in 133 people have celiac but only a tiny percentage of those are currently diagnosed, the costs of performing the test on everyone are probably lower than the costs associated with undiagnosed celiac.  (That might be an exaggeration.  I clearly have not done those calculations.) 

While health care is on everyone's minds, its a great time to suggest that your loved ones get tested.  A simple blood test might save more than your friend's life... it might just save everyone a ton of cash. 

Online Social Collaboration Community

There's a new resource in town.  Gling is a brand new social collaboration community.  It is totally free and the content is member-driven.  It combines several social networking forums; members can use the site as a base from which to blog, tweet and post comments.  It is primarily focused on recipes, gluten-free friendly locations and foods. 

So that's the short and dirty.  The real story is that this resource has the potential to be a truly useful, supportive community for those who have celiac or cannot eat gluten.  It is a distinctly user-friendly site.  It's easy on the eyes, easy to navigate, and easy to contribute.  Community members are very welcoming.  Within a day of joining the site, I had four previously unknown people "friend" me, which gives me access to their resources.  As noted, it is new.  Which means that certain of the resources have not had time to get to maximum capacity of usefulness.  The locations section is virtually empty for DC.  We need members to add gluten-free hot spots.  Still, there are great recipes and everyone is there for a single purpose: to spread the word about gluten-free living. 

Your mission if you choose to accept it: Sign up for gling and see if we can get the DC location filled with at least twenty spots in the next two weeks.  Go!