Friday, February 6, 2015

Hallmark Needs another Do Over

Another wonderful evening of sappy Hallmark love movies, or so I thought.

I sat down to watch I Do I Do I Do which is a knock-off combination of Groundhog Day and 50 First Dates.

I had just come home from a catered event, just fresh from having an argument discussion with the catering manager over whether it was appropriate for me to use my fingers to serve myself some food.  Despite forgetting to put out napkins, plates and silverware, he RUSHED right over when he saw the finger trick and insisted I use the gluten-infested tongs instead.  When I asked for silverware or a clean spoon, he insisted I use what was there.

I said, "I'm just going to use my fingers, very carefully, thank you."

He said, "That is OK if you have washed your hands and haven't blown your nose."

It's not like I just pulled my hand out of my butt right before getting in line.  I had been eating all day with same hands and hadn't gotten sick, yet I was required to use a utensil that would have made me get sick for a couple of days.  After that kerfluffle, someone rushed in with all the necessary utensils.

Sooo......I thought the Hallmark movie was going to be a bit more relaxing.  Then they started in with the gluten comments.  In this movie, the main character gets to do a "do over" of her wedding day, presumably until she gets it right.  And a bunch of the "do over" days included stabs at gluten-free food, including the wedding cake.  She gets to do the day over and over until she realizes that the man she marries every day and that gluten-free lemon cake aren't right for her.  Somehow, this new gluten-eating behavior is supposed to make her more spontaneous and free.

Yep, this is Hallmark's version of a "do over" and it looks like they will be headed for another day, since they still don't get it.  Awhile back, Hallmark was blasted for its insensitive greeting card mocking gluten-free.  Whoops!  They did it again.

But gee, I would like a "do over" too.  Wouldn't it be nice to wake up one morning and be able to eat anything I want?  To not have to rush to the front of the buffet line before everything gets contaminated, and the people brush all the condiment utensils on their buns?  Or, be able to walk out the door in the morning, not having to take all this food, and just be able to go out to a store or a coffee shop if I want to.  Unfortunately, when I wake up tomorrow, I will still have to avoid gluten, and have to deal with the gluten-haters.

Thursday, January 1, 2015

Nine months later, and still no Baby

Today marks the 9-month anniversary of the blood-draw that led to my diagnosis of celiac "disease".

It has been a wild ride, but has seemed to settle down during the last couple of weeks.  I have learned alot, healed alot more, and also came to more insights.

Here's a few tidbits and insights:

1.  I am (was?) not very much low carb.  I didn't worry all that much about what I ate during this transition.  I felt I had enough to worry about with potlucks, finding out what I could eat, and trying to not get contaminated, than to worry about other things.  The result was that I gained back all the weight I lost.  I hate the idea that I seem to be one of those people who cannot lose weight without constant starvation.  Oh well, guess I'll have to own it.

2.  I finally trained my family.  This was hard, and required constant monitoring during holidays.  I discovered that it is almost not worth it to even try to eat during the holidays, just fire-bomb the kitchen afterwards.  Despite dozens of planning discussions, I still had to swoop down and rescue the butter knife, keep the cookies out of the kitchen, say no, no, a thousand times no to family members who insisted on bringing on all sorts of crap despite hearing constantly, "Just bring plain sour cream,",  "Lets just have plain food," "Just bring plain sour cream," and seemingly-endless phone conversations where they read off the list of ingredients for the fake sour cream-like dips they bought "because they were cheap", instead of buying plain sour cream.

3.  I chugged a carton of milk.  I was milk-intolerant.  How did this happen?  I haven't been able to drink milk since I was a little kid.

4.  Potlucks suck, but things are good if there is hot coffee and real cream.  Coffee is my go-to food at potlucks, since I tend to get something contaminated at potlucks and restaurants, even when I am very careful.  I quit being careful at restaurants, not worth the hassle dealing with the questions, the rolling eyes, and the contamination.  I can usually drink the coffee, and I drink lots of it.  I have found that if you are drinking coffee, especially with cream, people don't notice that you are not eating.

5.  I need to find a new religion.  I first knew I was in trouble when I was chatting (with coffee) with a new attender at a potluck.  She was an up-and-coming healthywholegrains dietician wanna-be who insisted I try her quinoa salad.  (I also got a lesson about the healthyquinoa, which I thought hilarious, especially after I told her I had been a vegetarian.)  I caved and tried the salad.  I got sick.  Since then, I have not eaten any grain salads at the potlucks, but I have had to endure the animal-rights wing of my religion shame people for eating animal products.  Since I can no longer eat wheat, corn, oats, soy, MSG, most wines and spirits, most beans, and most rice, I really suck as a vegan.  That vegan ship has sailed, and then it sunk.  I am no longer apologetic, despite the public spiritual shaming by my soon-to-be-former religious affiliates.

6.  People hate gluten-free eaters more than they hate low-carbers.  Sad, isn't it?

I'll have more to say later.  Right now, I need to just go back to straight low-carb and hang out with supportive people.

Thursday, May 22, 2014

A yukky Week for the Celiacs

Don't let me rip apart another clinical study!!!!!!  (Especially when I haven't read all of it....)

By now you have heard from practically everywhere that a new clinical study has prooooved for all time that all that gluten-free faddy stuff is stupid.

The new vast-grain-conspiracy mantra is:  NO -SEE -BO'O

What don't I like about the study, even after not reading it:  First, media sensationalism.  Hyperbole.  Gluten FAD diets.  What's not to hate about the way the media has handled this?

Then there is the idea of replacing the BAD gluten with something equally bad, dairy.

Third, there is the short cross-over period, and very short wash-out time.  I don't know about you-all, but major symptoms for me need at least two weeks.  Three days for the big stuff, maybe that is for most people who have full-blown "intestinal" celiac.

Perlmutter says it best in his blog post, what is really wrong with this study.  He also hints at the idea behind why I refuse to get "officially" diagnosed for celiac.  There is no reason on earth why I should go to a gastroenterologist for an expensive and invasive test if I do not even have "their" symptoms.  At best they might find local antibodies, but damage, not as much.  I can eat all that FODMAP stuff like jerusalem artichokes, onions, greens, cole crops.  I eat tons of veggies.  (I know, SHOCKING, on a LCHF diet, just SHOCKING!  I must be the only one.)  Why force me to eat wheat for six months, surely increasing the gluten-related neurological problems, just so I can make some non-symptomatic GI problems bad enough for a gastroenterologist to make money off me?

Actually, I am OK with the small sample size.  A small, well-done study with responsible reporting always wins.

Monday, May 5, 2014

Celiac is stupid

May is Celiac Disease Awareness Month.  Yay! (Unless you are Dr. Davis who believes wheat is a poison so a bad reaction to it cannot be a disease.)

I recently became aware that about 1 percent of people in general have celiac, but that two percent of seniors are diagnosed with it.  Rheumatoid Arthritis is the one people usually think about when they think of old people, and it is in the AI screening panel blood test.

Now the really interesting thing about RA is that while most people associate it with pain, limping and gnarled fingers, it can cause all sorts of other problems, and can look pretty much just like lupus.

So, how do you tell the difference?  Almost all AI diseases are diagnosed on the basis of autoantibody blood tests.  Except celiac, because celiac is stupid.  For celiac, they make you continue to do exactly the thing that makes you sick, and do it long enough for there to be permanent intestinal damage. 

Docs supposedly well-versed in celiac (almost ALWAYS pediatric enterologists - this is why they know so much about celiac in older people!!!!@!) demand that an invasive endoscopy be performed, despite what a silly little blood test does for all the other autoimmune diseases.  That is how they make their money.  Oh, I guess they can use the procedure to rule out other gastrointestinal diseases, but REALLY, if there are no gastro symptoms to go on, the test would be a total waste of time.

Let's go through the math.  Lets start with what we'll call PATHWAY A.  Lets say you are young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  What would a sane person do with this information?  Answer:  give up wheat.

Pathway B.  Now lets say you are still young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  You decide you would like a definitive celiac diagnosis and so decide to do the endoscopy and maybe a blood or genetics test.  Your results indicate that you have celiac and that you need to give up wheat for life.  What would a sane person do with this information?  Answer:  give up wheat.

Pathway C.  Now lets say you are still young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  You decide you would like a definitive diagnosis and so decide to do the endoscopy and maybe a blood or genetics test.  Your results indicate that you do not have celiac and that you don't need to give up wheat for life.  What would a sane person do with this information?  Answer:  give up wheat anyway.

All pathways lead to the same outcome, giving up wheat.  Therefore, it doesn't really matter what tests you do, the outcome is exactly the same.  But Noooooo, in CeliacLand, they force you through  either Pathway B or C.  This is why celiac is stupid.

Friday, May 2, 2014

Autoimmune "diseases" are Stupid

With NO apologies to Jimmy Moore, who thinks that a blah-blah-blah-is-stupid title is stupid.  Well, welcome to Snarksville.  I won't stop, and I also won't eat a stick of butter with a candle on top for my birthday.  (I just got a copy of Dr. Davis' latest cookbook.  Yay!)

Anyway, where was I?

I should have called this "Diagnosing Autoimmune Diseases 101", if I hadn't wanted to catch your attention.  Here's how its done.

Go to the doctor for something.  The trigger for the AI path can be just about anything, anything on the continuum from pain to having been in the hospital for a week with everything failing.

The first test is ANA.  If this test is negative they can send you home, declare you a hypochondriac, or send you down some other path that may be just as stupid but won't be covered here.

If it is positive, they diagnose you with lupus.

Now, the reason that AI diseases are stupid is this.  Just like what my med-school entry advisor told me:  "Medicine is the only educational pursuit where they weed you out BEFORE you get into school."  The AI playing field is the only one where they diagnose the VERY WORST condition first, and then back off from that as more data comes in.

Can you imagine if you go into the doc's office for a small growth and you get back a letter saying you have cancer, and then a few weeks later you get back a letter saying it was just a wart?  Yep, not gonna happen. go home with the diagnosis of lupus and read all about it on the internet.  People are all carrying on, and you know someone who's sister got it really bad and she dies at 29, and what will happen to the kids?   You start to get really worried.

You go to take a bunch of other tests, around ten of them usually.  You don't test for an immune reaction to EVERYTHING!, just the major stuff.  Stuff that will indicate that your liver or kidneys will explode.  Stuff that will tell if you have one of the major AI conditions or the other.  They aren't as interested in splitting hairs if they think that either-or won't kill you.

If something else shows positive, they might move you from the deadly lupus diagnosis to something that sounds a bit better, like arthritis, Sjogren's or thyroid disease.  Once you have your new diagnosis, they won't usually test you for all the little diseases unless you have really terrible symptoms that don't respond to treatments.

They'll send you to a rheumatologist, who will watch you every few months while you get better, worse, or stay the same.  They might also send you to someone else to take care of other symptoms.

In my case, I got diagnosed with lupus, had it changed to "not-lupus" with secondary Sjogren's syndrome, to UCTD, to "positive ANA" and told I didn't have to come back. (BTW, UCTD is the catch-all disease-name for "we don't know WTF AI disease you have, but you're achey and its not that bad".)

The tests for celiac aren't included in the typical AI diagnosis panel.  Stupid?  Hmmmm.

Thursday, May 1, 2014

I'm Glad I Listened!

"Stop Telling me How to Eat to Cure My Incurable Disease!" screams the title of a blogpost provided by Woo.  Thanks Woo!

LOL!  I could have written this at one time, but I don't feel that way anymore.

A long time ago, a few months after being diagnosed with lupus, I still wasn't feeling very well.  I was getting discouraged by my inability to carry on throughout a normal day, thinking that I would never get better.

We got together with friends over the 4th of July, and I was talking about my illness with my friend, who has a BSN, so the conversations can get fairly technical at times and she is right there with me.  I was also drowning my sorrows in non-local wine.

They had another new friend at the party, a guy someone met at the gym.  At first he seemed friendly.  But when the others left to get more beers or to go to another part of the roof for an ocean view, I was left alone with him.  He got right into my face and started SCREAMING at me about what vegan food I should eat, what supplements I should take, how I should exercise.  Just like a drill sergeant.

This went on and on.  I was stunned.  I couldn't move.  I just sat there saying to myself, "Somebody rescue me!  Please!  Why can't they help me?"  Eventually the others came back, and the drill sergeant went onto other things, but I don't think I moved out of that chair until we were ready to leave.

Then again, if someone had told me at the time that I shouldn't eat wheat, I wouldn't have appreciated it either.  I didn't reduce wheat until over a year later.  By that time, I had figured out the appetite-stimulating aspect of wheat, and started reading about a low carb diet.  By the time Dr. Davis' book came out, I was planted firmly in the "wheat is poison" camp.  After a couple of years of monitoring (and a stint with Robb Wolf's autoimmune Paleo diet) my rheumy told me I didn't have to come back anymore.

I sort of forgot that I had an autoimmune disease.  And the concept that it might even be celiac was absolutely off the radar until I started reading Dr. Perlmutter.  So I am really glad that people like Dr. Wahls and Dr. Davis and Dr. Permutter are still telling people what to eat to cure their incurable diseases.  I just wish I had heard this information years ago.

Some time after the party, I mentioned the incident to my host.  He had no idea that the nutritional bullying was going on.  He still recounts the story to new guests, at every holiday, and he still keeps apologizing to me.  By now it seems pretty funny to all of us, but at times I am just so surprised at how many people think they can attack sick people.

Tuesday, April 29, 2014

The Birthday Problem

Maybe it was all the resistant starch beforehand, or a ton of time in the ice tub, but I just had the craziest dream the other night.

I dreamed I was with my friends, and the "Birthday Problem" came up.  That is the one that many quant-y folks have run into in a statistics class.  It goes like this: 

There are 23 people in a classroom.  What is the probability that at least one of them has the same birthday?

The probability is astoundingly high by most people, because the natural inclination is to think that this is very very rare.  My students mouths always dropped open when the answer was revealed, and it really got them thinking that maybe statistics wasn't so useless after all.

I had one student who was a real go-getter, and in her spare time, she liked to rent roach coaches, create interesting menus and hang around the local sports stadiums for a quick buck.  Unfortunately, many other folks in the restaurant biz hadn't run into the problem.

Anyway, where was I?

Oh yeah, the dream.

I decide to explain the birthday problem in great detail to my quant-y friends.  We arrange for a short presentation at a hotel we're staying at.  Other hotel guests get wind of the presentation, and by the time I am ready to start, the room is full of people with all sorts of interests and levels of understanding.  It gets quite comical.  I decide to start with some basics, and somehow I get into a discussion of the history of industrial statistics.  My new students are enthusiastic, but needy and time-consuming, so I remind myself and them what the talk is really about.  As I go back to the technical discussion of the birthday problem, most of the lecture-crashers leave, and I am left with my original presentation and my original friends.

As most dreams go, I never get to the presentation.  I wake up to my house-flipping neighbor's construction crew jack-hammering their front porch, and I sit there for awhile with my day-brain, wondering how I could actually describe the birthday problem more easily, and for that matter, why did this dream even come up?

Earlier I was reading about the percentage of celiacs, which is now around 1 out of 100 people if you include the folks who don't know they have it yet.  I had also gotten off the phone with a family member.  We were planning another mandatory multi-day get-together.  I was told I was "on my own" with the food situation, but also that we weren't going to make it a big-deal food-prep week like many of our gatherings.  Basically, it was, "You can't eat and you can't cook."  I was pretty mad about this.  (Said relative has now thought, back-tracked, and decided better accommodation was a good idea.)  But it got me thinking about how places like Starbucks and Panda Express pretty much say, "Hey Celiacs!  You're on your own here.  If you have some sort of problem, then don't eat ANY of our food."

And I thought, they probably think that there isn't much celiac to accommodate, right?  Isn't it like they are going to lose around .1% of their customer base by flipping celiacs the bird?

Like the birthday problem, the actual consequences of their decision are much larger.  The way to solve the birthday problem is not to look at how many people have the same birthday, it is to look at how many ways the students in the classroom CANNOT have the same birthday divided by the total possible ways that they can all have birthdays.  That is pretty easy to do, and then you just subtract that from one to get the answer.

So here's the restaurant problem.  It is not that they will lose even 1 percent of business.  People usually go to restaurants with other people.  So in order to see impact on restaurants, you have to calculate the probability that NONE of the dining party has celiac and then subtract from 1.

I have done the calcs, and put together a little table, showing the reduction in business if a typical table of 4 or 6 decides not to eat there if the restaurant refuses to provide workable gluten-free options.   The various percentages of celiac or wheat intolerances are also shown based on estimates by Drs. Fasano and Davis.  Of course, this calculations assumes independence, and we all know by now that this is not really the case with dining families, since it is an inherited disease.  So if one person has celiac, the others are much more likely to have it as well.  But, the table does work for friends.

Percentage C or WI                   Table of 4                  Table of 6
1%                                                 4%                                6%
7% (Fasano est.)                            25%                             35%
37%  (Davis est.)                            84%                             94%

You can see that the lost business starts to get pretty high.  Currently, it is pretty easy to ignore the celiacs, either by not offering appropriate menu choices, or improper preparation.  But it is getting pretty hard to ignore the gluten-intolerant.  This is probably what is going on with Lean Cuisine, bread stores, and even places like Red Lobster.