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.

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.
 

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.

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.                     

Meeting my Acquaintance

One of the advantages of going completely gluten-free is that I have more energy.  That is, more energy to be snarky ----------- or angry --------------or ranty.

Yesterday I was whiny.  I am already obsessing about what will go down during the next big holiday.  'Course, in order to make everything all better, I talked to MOM for a long long time over several days.  Mom was so great, having gone through severe bouts of autoimmune disease herself.  I spend a good part of my early youth shuttling around to different people's spare rooms while she was in the hospital for lupus, or whatever else they thought she had that day.  So, she has developed this really cool attitude about chronic debilitating illnesses and such.

She said it would be absolutely no problem, since she regularly cooks for other family members with such severe allergies that they routinely land in the hospital.  (Not from HER cooking.)  She is skilled in keeping the wrong foods out of the wrong hands.  But I am really fretting about another relative who does much of the cooking for our big family gatherings.  Her life is filled with 20 kinds of pasta and bread boards, and cakes, and hundreds of gluten-infested baking containers.  She carries a cloud of flour around her like Linus.  If she had an "In Case of Emergency, Break Glass" box for her life, behind the glass would be a box of cake mix.

I imagine my kitchen littered with drying bread-crumbs, flour from the cinnamon rolls and muffins and pumpkin pies strewn about.  I see her moving from dish to tasty dish, her various fingers and utensils stuck into every one.  Now I know why I have been getting so sick every Thanksgiving.  It is from the stuffing, made with half corn bread and half whole wheat, and somehow drenched in Campbell's cream of mushroom soup in a way that no one else has ever been able to duplicate.  And from the mashed potatoes with real milk, drenched in giblet gravy with even more flour.

How can I tell her that we have to do it differently this time?

I was supposed to get together with relatives over the Easter holiday, but I just didn't have the energy to do it, but truth be told, I wasn't looking forward to the food confrontations either.  Initially I had hoped to find an ally, or at least get some good help from someone who can read Hyperlipid like its the back of cereal box.  But that was not going to happen. 

How can I tell her that the diet that she detests so much is the only thing I can eat?

After missing the big Easter gathering, I checked her facebook page for posts and pictures from other attendees.  What I found instead was a link to that awful paleo fantasy book interview, and a couple of snarky comments.  (OK, guess snark runs in the family along with several copies of HLA-DQ2.)  The poster could actually read and understand Hyperlipid as well, but won't.

I don't know why, but seeing this post upset me so much.  I whined.  I cried.  My husband told me to get a life.  I thought I might have to unfriend her, or at least leave another snarky comment before I cut the cord.  But I couldn't unfriend the family chef!

I acquaintanced her.  And, changed a few settings.

I just hate that Paleo is mandatory.  I just hate Dr. MacDougall.  I just hate Joel Fuhrman.  I hate it all.

Gluteny and Sloth - The game changes

I know I know I have been awol.  Not for lack of things to say.

Just 'cause I don't even know where to begin.

I have celiac disease.

Yuk!  What was formerly a bunch of fun "food experiments" now becomes a medical necessity.

I don't want to be one of THOSE people!

There is more to this story.  Please stand by while I collect my thoughts.