Top Five Impacts on Celiac Awareness

This blog is about increasing awareness for Celiac, so I thought I would name my top five in what I consider to be most important for raising Celiac diagnosis rates and Celiac awareness generally in the last 10 years.

#1. The phenomenal growth of diagnosed celiacs - a self-feeding loop
#2. Celiac Consensus Meeting @ NIH - moved many doubters away from complacency
#3. Elisabeth Hasselback story and book - mass appeal
#4. Establishment of National Foundation for Celiac Awareness - first organization specifically focused on awareness to the exclusion of other activities
#5. Heidi Collins named NFCA spokesperson, cuts Public Service Announcement - brought star power and attention to the cause.

Blog post inspired by the survey at Savvy Celiac.

Managed care insurers now have an economic reason to diagnose Celiac Disease

One of the barriers to awareness and diagnosis of Celiac disease has been the lack of enthusiasm on the part of health insurers. Now things have changed, and it is about time.

The Journal of Insurance Medicine has published a Celiac economic study by the Celiac Disease Center in Columbia that shows a decreasing cost after diagnosis.

"Researchers led by Dr. Peter Green, a professor of clinical medicine, said their study of a large managed-care database revealed cost reductions after diagnosis of celiac disease were attributable to decreasing trends in utilization of office visits, laboratory tests, diagnostic imaging and endoscopy procedures. "

This study is years overdue (see this two year old post including insurers), and it finally gives managed care insurers an economic reason to make sure all Celiac disease sufferers in their populations are diagnosed.

As a next step, I hope to see data-driven suggestions from these insurers soon. For example, it would be cheap and effective for them to send an email to segments of their population saying something like, "You have chronic iron-deficiency anemia. The differential diagnosis for that condition includes Celiac disease. Have you discussed it with your doctor?"

IBS sufferers should be tested for Celiac disease

More news outlets are starting to pick up the concept that Celiac might be the actual cause of many undiagnosed symptoms. I saw this article on Google alerts the other day, repeating the story that IBS sufferers should be tested for Celiac disease.

Here's the guidelines if you don't want to go hunting for them.

IBS patients with diarrhea or a mixture of diarrhea and constipation should be screened with blood tests for celiac disease, a condition in which one cannot tolerate the gluten protein found in wheat and other grains.

Of course, this blog brought this health tip out nearly two years ago. While the GI docs seem to be getting the message out, it would be great if some of the others, like Dermatology and those involved with neurological disorders, could get on board.

Does Steve Jobs, Apple's CEO have Celiac?

I saw a post on the Motley Fool site about Steve Jobs. Mr. Jobs has lost a lot of weight recently. He is CEO of a major company, and Apple doesn't have much in the way of a succession plan, so even the Wall Street Journal is interested in his health.

It is not a stretch from a numbers perspective. One has to figure that there are probably four to seven CEOs of Fortune 500 companies having to work with the issue, whether it is known by them or not. (It may be that the effects of being an undiagnosed Celiac keeps people from the top job).

There were two things that I thought were interesting about the article. One was the "oblique" reference to Celiac. By "oblique" I mean that Celiac was mentioned, but it wasn't the focus of the article. It was mentioned as an aside, and I think that is a great development for Celiac awareness. The second item of was and continues to be Steve's struggle to maintain his medical privacy in the face of legitimate investor concerns. Can anyone imagine how difficult a situation it would be where you didn't feel comfortable telling your co-workers you have Celiac? Personally, I made the decision a long time ago to tell everybody. But what is good for me and what is good for Steve Jobs are two different things. Sometimes it is hard to be a celebrity.

Wednesday Update. A Time magazine posting mentioned Celiac as a possible cause.

Creating tie-ins to expand awareness

Here's a great article on Alek Komarnitsky’s Christmas lights that increased awareness for Celiac. The thing that I really like is that Christmas lights don't have anything to do with food or medical or support groups. It opens up a whole new avenue for awareness by tying in the awareness message to a topic with broader appeal.

The Christmas season also brings up Christmas cards. Because Celiac is genetic, and many people on Christmas card lists are related, I think that Celiac news should make the list. It doesn't have to be too obvious, but saying things like, "We visited this vacation spot because of the great gluten-free options" can signal to family members that they might want to look into Celiac, too.

Awareness in N. Texas/Newsweek

It's always great to see awareness activities make it into the media. Here's a good article about James McConnell, 11, who was interviewed by Newsweek. I think it shows a good example of how national exposure can result in a knock-on awareness activity locally.

GF Search Engine - needs work

I heard about a new Gluten free search engine here. I appreciate the effort, but the site needs work. For starters, the site is not just a search engine, it also has a store, which sends a mixed message about the impartiality of the results. Parts of the site do not work with the Firefox browser. Finally, after I entered "awareness" as a search term, the first ad served by Google was NOT for gluten-free products.

It's pretty apparent that the site is simply using a slightly customized Google search. Anyone using Google themselves can likely replicate the results from the search engine. The value in the search engine would be in creating a "search first" list for the celiac-specific and GF specific sites. It's not clear that the results delivered by the search are any better than plain Google results as yet.

The site could be made better by getting rid of the Google served ads, removing the store and making all parts work with all browsers.

Awesome celiac/run day.

I had a good chat today with one of my friends in the Celiac Awareness business. We talked about various strategies and tactics to get doctors more likely to diagnose Celiac. It was a great call.

For my run, it wasn't an auspicious start - I barely had the energy to get out the door and mostly walked to the track. Somewhere, I learned it was a good strategy to just get out the door, and then just try to walk, then jog, then run, then do the workout. That worked today, despite a late start and an initially tired start. I was supposed to run 2 miles twice at 8:34 pace, but it seemed easy. My last mile was probably around 7:50, and I finished not breathing hard. Now if I just ice my legs and get to sleep, the day will have ended up pretty good.

New Autoimmune Awareness/Research Bill

HR 7078 was filed yesterday with some interesting provisions, and Celiac is one of the conditions listed. As someone who worked hard to put something like this into the Texas Republican Platform, it gladdens me to see the bill introduced. I like some provisions and disagree with others. I hope it generates some good discussion.

Amy's 26th (Flanagan gets Bronze)

Amy Begley-Yoder ran 26th in 32:38.28, a little over 2 minutes behind teammate Shane Flanagan, who appears to have set an American record of 30:22.22 in the process. It wasn't Amy's best time, but I think she probably ran the race she wanted to, so good for her. Based on what she said about her pre-race strategy and abilities relative to the field (I haven't seen the race yet), she probably had to put out 102% for too long to stay with the top group and then cracked.

I hope NBC shows some of it now that there's a US medal winner. Amy's bib number was 3140, I think. An interesting note for the future is that Shane's first Olympic appearance resulted in a 22nd place finish, so I wonder what the future holds for Amy?

I nominate Amy for fastest Celiac on the planet - I'm proud of you!

Go Amy! Women's Olympic 10K final starts in 15 minutes

NBC Olympics has Amy Begley-Yoder starting the 10K in lane 3. Amy had to find her own cook in Beijing. GO AMY!

Mayo Clinic Highlights Celiac Disease

I noted this article today. This one was interesting in that, coming from the Mayo Clinic as an authoritative source, it will likely get lots of media play and quoted widely.

Gene-Testing measure becomes law

OK, so this is a post on something that happened a while back, but remember, Oprah preempted it. There's been a fairly steady march of legislation that prohibits discrimination on a variety of fronts (racism, etc). One of those fronts, and perhaps the newest one, happens to be genetic testing. The latest version of the law prohibits employers and insurance companies from discrimination when a genetic test reveals susceptibility to a costly disease. It passed overwhelmingly.

This whole area leads to some interesting personal behaviors. Some people I've talked to pay cash and use fake names when they do genetic testing, and others don't do it at all (although honestly that's mostly because of the expense). Also, there's the question that genetic testing for Celiacs is more about ruling the condition out right now than confirming the diagnosis. While the law was likely targeted at conditions that are super-costly, it applies to everyone.

I'm unclear on whether this law will help or hurt the cause of awareness, but on balance, I think it will help. While most people don't like discussing medical conditions, this legislation likely makes it less personally costly to do so. One thing that would help awareness would be a lawsuit brought by a Celiac under this statute, but I honestly don't wish that on either the employer or the employed -- there's better ways to raise awareness. Only time will tell. Stay tuned.

Extra Long ride Saturday, paying today

I'm doing the MS 150, which I hear is actually closer to 180 miles, so I've been adding in some biking mileage where it makes sense, like on a weekend ride. Nobody from my team for the ride (Team Trinity) wanted to go the 70 miles on offer. I did, and it went by pretty quick. One of the training things is that I really don't want to draft off of others, because they penalize you in the race if you do so. Of course, people on the ride just love it when they can get sucked along for "free." And I don't mind if it's not a race.

Of course, a bunch of people looked at the calendar and said, "Oooh - I haven't gotten in my long rides yet." I saw so many newbies out there, we could have used twice as many ride marshals. The police coverage at intersections was pretty good. I think I did 75 total.

My Tivo did pick up that episode of the celiac segment on The View. There's a big old weather warning on it, but what do you do?

The Y wants me to come talk to the new running group. I've been doing it so long, I wonder if I can make it simple anymore. At least I get to mention Celiac in passing.

Speaking of the Y, I did my first "real" swim workout there tonight with warm up, drills, and sets. Let's just say there's more work to be done.

The brutal thing was then I came home and did the hour run on my treadmill. I usually try to have an action/adventure movie in, but I ended up watching the last half of the Shawshank Redemption. There are some real slow spots in that movie. And I looked down at the timer a lot. I finished 45 minutes ago, and I think I'm tired enough to beat the two hour rule to bed.