Mass Celiac Screening Cost Effective

Screening young adults for Celiac is cost effective, says an Israeli study. It would be an excellent use of CDC money to do the same analysis for the US, especially since it appears it takes longer here to get a diagnosis (11 years?) than in Israel (6 years).

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.

Need better data on inactive ingredients

People who know me know that I am trying to lose weight and get faster this year. Well - I can definitely tell you one way NOT to do that. I had a stomach bug that basically took me out for a week (I managed maybe 16 hours of on and off working over the entire week...)

I worked some of those hours on Tuesday. By Wednesday it was clear I was headed for worse trouble, so I made an appointment for Thursday morning. Having been without solid food for days at this point, I literally dragged myself to the doctor's office, which wore me out. (My wife was running our children around to their various functions.) The doctor looked me over and said I looked 'very bad' -gastritis. She ordered up a slew of tests to be on the safe side. I drove to the lab and revived in their waiting room somewhat.

I decided to go over to the local pharmacy and try to fill my Carafate prescription. I told the pharmacist I was a Celiac and asked her if the Carafate had any gluten. She was holding a bottle in her hand, but she didn't know and said she would need to call the manufacturer - could I wait or come back? At that point, I was wondering if I could drive home. I called my wife, and she offered to check and pick it up. So I drove straight home and went to the futon, where I lay for about four hours in misery, too tired to move. Meanwhile, my wife came home, we found out it was gluten free, and finally got the prescription -- about five hours later and honestly the best we could do, given our circumstances. I finally had my first dose around 6.

The point is - for Celiacs - the "inactive ingredients" may or may not be. If there was better information, I wouldn't have had to suffer for those five hours. Has anyone else out there suffered a similar lag between prescription and acquisition? What coping approaches to you use?

Gluten-Free Medicine?

That cough turned into sinusitis and bronchitis, and now I find myself looking for some gluten free medicine. In my 2003 guide to medications, it says that Zithromax (the pill) is not gluten free, but the suspension (usually given to kids...) is. I always get funny looks at Walgreens. The Waltussin DM seems okay, too.

As an aside, I think the FDA should rename those "inactive ingredients" to something like "mostly benign ingredients" Has anyone out there run into trouble going off the "approved" list for their medical plan because of gluten ingredients?

Sometimes I want to live in a bubble

There's a new survey out for those who want to chime in on the proposed FDA ruling. I took it, in the interest of adding my voice to that of the crowd. I wasn't happy with it, because it didn't ask about my habits now, and then how they would change under the proposed ruling. Personally, I think I'll buy less prepackaged food and more "pure" foods if they go with the ruling as it is, which is probably the opposite of what the manufacturers want. It's been a tough week (having traveled), so at times like these sometimes I feel as if I'd rather be in a bubble.

But then I wouldn't have sat next to a GI surgeon on the plane today, so I keep plowing ahead.

Some quick tie-ups. The "dangerous" ride director sent out an email that, while not quite an apology, did give the impression that 1) He got an earful 2) the hurt riders would live and 3) they won't be doing that route again.

I went to the Risotteria in NY for dinner. It was good, and it turns out that it's pretty close to the subway line. They said lots of people have been having trouble getting Redbridge up there. Kinda makes me feel guilty to have a sixpack in the fridge...

The Hilton where I stayed made it up to me with a GF breakfast this morning. It would be better to have GF processes in place, but I'll take it.

Workout round up: I did the two workouts Wednesday and my workout when I got home. I'm pretty bushed.

On course, FDA, DNA Testing

I am settling into my new workout schedule fairly well. Yesterday, I had a good brick work out consisting of 30 minutes on the bike followed by a 15 minute run. It was harder than I usually go for those types of workouts, so I guess my body's going to learn something. Today was an easy spin at 100 plus revolutions per minute and a swim. It's getting easier to spin quicker and more fluidly, so that's a bonus. For the swimming part, I took my kids up to the YMCA. I vowed I was going to swim 500 m today, which is a little bit farther than Tuesday, but not so far that I would overly stress my rib area. It worked out pretty well and the kids enjoyed playing in the warm end.

On the celiac front, I received the nicest e-mail newsletter from the National Foundation for Celiac Awareness, and I thought there were two interesting things in there. First, there was the best explanation I had ever seen on DNA testing for Celiac. The second thing I saw was the instructions for submitting public comment on the FDA's proposal.

Yesterday, Iwent out and bought some more of that Redbridge beer. I talked to the manager at the liquor store and he said they're going to order more because it sells pretty quickly. Maybe their example will encourage more food companies to come out with truly gluten-free products.

FDA sucker punch...

The FDA has released their guidance on having a gluten free label, allowing 20 ppm - without much science to go on. I don't know about you, but in my book, "Free" means "with none" - so if this regulation goes into effect, I won't be able to trust "Gluten-Free" labels either.

In my opinion, the FDA is conducting another mass experiment on the population. I work hard enough to keep gluten out of my diet. I don't need the FDA confusing the food service industry by saying that "when you are serving Celiacs, some gluten is okay, after all, it says Gluten-Free on the label and it has 20 ppm." For those of us who are diagnosed, the FDA is guaranteeing a minimum level of environmental gluten in our food chain. Gee, thanks. Maybe we can get the EPA to guarantee a minimum level of hazardous waste on your computer keyboard.

You can read the document for yourself here.


In other news, I did my first workout on schedule today, and I have another volunteer for the Celiac Awareness Race/Walk in May.