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.

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.

So....you 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.

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.

My Resistant Starch Experiment - LOL!

or, cry out loud.  Whatever.

I have been following the RS debate for awhile now, carefully trying to avoid some of the prominent "C-word" websites all along.  But, you see, I already invented it.  I am lower carb, not VLC, and not keto much of the time unless I forget to eat or skip a meal.  This is more and more common for me to skip breakfast, but to also eat similar foods with more carbs than for keto.

And I think last season I grew around 100 pounds of Jerusalem artichokes.  (nuf said?)

This year, due to hoards of rabbits burrowing under the chokes and eating a great majority, I toyed with the idea of eating more potatoes instead of relying on my now-shorter choke season.  In addition, all the chokes that weren't eaten either by myself or the rabbits started sprouting early, making them not as fit for eating.  The little wascally wabbits even stole the tubers out of my basket that I leave right outside the kitchen.  (I wasn't bringing them inside due to all the pill bugs.)

So it didn't seem all that weird for me to buy a few potatoes and try them out.  As I was preparing them for my family, I had a bit of raw potato.  Resistant starch, right?  How hard could it be?

A couple of hours later, I didn't feel so well.  I was burping something, my arthritic knee started hurting, my other knee started hurting.  In fact, everything in my body that had sustained an injury in the last several months started hurting.  Then a huge headache, weird cramps, then chills, then I couldn't walk without bumping into stuff.  I decided I was done with that and went to bed.  I couldn't take an aspirin or anything because I thought I would throw up.  I slept sitting up, and woke up several times to drink more water and to try to mentally calm my racing heartbeat.

I woke up in the morning still very groggy and miserable, and whined to my family, "I feel like I am dying.  I don't want this to be my life from now on."  It felt like my whole body was liquifying, like I had been visited by Harvey Keitel and had been "cleaned".

I went back to bed, but forced myself up after awhile, and forced myself out of the house.  By afternoon I was fine.  There were confounding factors.  Had I been glutened?

You know, I am really done with potatoes for awhile.  I don't care if there are confounding factors.  I'm too chicken-s to go through liquification again.

I'm such a loser

The first time this happened, I thought it was an outlier, and like every good researcher, I threw it out.

(Nawwwww!  Just kidding.  Regular readers know I don't throw up out any data points because they don't agree with preconceived notions.)

I was on the phone with sis the other day, talking about Thanksgiving.

"I lost a pound over the weekend, " I crowed.

"I gained your pound and then some.  Guess I'll have to exercise more this week," she lamented.  "It was all the stuffing....."

And, this is from the skinny one, the one they tried to bulk up all those years.  The one exercising alot and eating a low fat diet because her doc wants her to lower her cholesterol.  At around 220 total, she is teetering on the edge of severe heart disease or stroke.  Or so he sez.

This happened at the last holiday we shared.  I lost a couple of pounds.  She gained four.

Oh, I ate the stuffing alright.  And a sliver of pie.  And some potatoes.  Then I got busy with the dishes and pouring more wine and forgot to have seconds.

"I'm stuffed!" the guests declared as they pushed themselves from the table.  And I thought to myself,

"Hey, I am not stuffed."

And the next day we went back to a regular fatty breakfast, turkey salad over a bed of greens for lunch, seafood for dinner.

Now here is what else I learned.  Corn chips give me zits and make me achy, especially my big toes.  And it isn't about the salt, because the next day I can eat a dozen green olives and have no problem with my joints.  Pumpkin pie made from my own real home-grown pumpkins is better than when it is made with pumpkin pie filling from a can.  And if you bury a turkey carcass in the garden, the gophers stay away.

I'm So Bored with the Paleo's - My N=1 Wheat

Here's another anecdote related to the locavore project I promised, and this is about wheat.  If you haven't read it yet, here's part 1.

During the year-long locavore project, we were allowed three non-local food items a month, with the option to switch them out to other foods at the end of every month.  We also were allowed other foods when out for non-local dinner (only two times a month) or when out of town.  After a few months of tinkering, I settled on a plan I would keep to for the rest of the year.  I would pick one grain, one meat, and then something extra, like chocolate, cinnamon, milk or coffee, and everything else was local.

I usually picked rice for the grain, but was looking forward to pasta and home-canned tomato dishes in the summer.  So I couldn't wait until June, when I switched from rice to wheat.  Starting June 1, I started eating wheat at almost every meal.  That meant cracked wheat for breakfast, wheat bread for lunch and pasta for dinner.  I thought I would be in heaven.

After the first week on the project, I lost about 6 pounds on mostly pork and rice with local vegetables, but I hadn't given up wheat entirely.  I still ate bread on my free meals out and oftentimes had some when I was out of town.  But, I never had it several times a day until June.

Around the middle of the month, I got very sick.  I went to the doctor and they did lots of tests and diagnosed me with lupus.  For some strange reason (fever-induced dilirium??) I just couldn't eat certain foods.  One look or thought of them and I felt sick.  I purged my kitchen of foods that made me feel sick:   milk from Von's but not Fresh and Easy, all my garden fava beans and unfortunately, wheat.

I called the locavore project leader, Kris Young (you can find him featured on primal docs) to discuss the situation, and he said it was OK for me to switch from wheat to rice for the remainder of the month, and I wouldn't have to abandon the project.

Slowly I regained my health, and learned lots about the failure of "modern" medical care.  I realized that once you are diagnosed with lupus, you can't get a doctor to take anything else seriously, because just about everything else is a symptom of lupus, which they really don't treat.  So I was on my own to find out what was happening and what to do about it.

I visited the rheumatologist every 4 months, did even more and more tests, and was eventually diagnosed with UCTD and secondary Sjogren's.  I was given pain pills (which I quit taking because they made me sick), dealt with fatigue, extreme morning stiffness and other symptoms.  This went on for about a year and a half until I went lower carb and all my autoimmune symptoms and obesity went away.

One thing I noticed on my food logs is that the little wheat I still ate greatly affected me.  Like Dr. Oz recommends, I had standardized my vegetarian breakfasts.  I had two of them.  One was a small glass of beet kavass, a small amount of yogurt with fruit, a small amount of oatmeal and one egg.  On the alternate day, I added in a bit more yogurt and substituted the egg for a piece of toast with butter.  I started noticing a zig-zag pattern on my food graphs.  Of course, the cholesterol zig-zagged as I went in and out of eating eggs, but my total caloric intake for the day had the opposite pattern.  Interesting!  Then I looked some more at my food diaries and realized that I had much greater trouble with cravings on the bread days.  Reading that it might be the protein in the egg that caused less hunger, I added an egg to breakfast every day, and I still got the same pattern.  Eventually I figured out it was the bread, and after seeing the craving pattern, it was pretty easy to cut the rest of it out of my life.

After two months on lower-carb, I went back to the rheumatologist.  This time, she took the autoimmune diagnosis off my chart, replacing it with "POSITIVE ANA".  I had no more symptoms, no complaints, no markers of AI disease of any kind.  I still hadn't really connected my illness to the wheat, and of course, with an N=1, there could by plenty of confounding variables:  menopause, stomach bug, tick bite, virus, etc.  One thing I do know is that when I add whole wheat bread back into my life, most of the symptoms return.  After three days of a higher-carb wheat-containing diet, I am tired and achy.  After just one meal of wheat, I wake up the next day feeling sick, and my fingers are locked together.

I still hadn't connected what was happening to the autoimmune disease symptoms to wheat.  I think it is a stretch to say that the great increase in eating wheat caused my illness, but I know for sure that avoiding wheat and excess carbs fixes the symptoms.  When I tell people that I have given up wheat, many tell me they could never do it because they just can't give up their bread.  Well, for me at least, I am happy to give up the lupus symptoms in exchange for being breadless.

Update 5/1/14:  Since I first wrote this post I have blood-tested positive for celiac.  I now believe that the great increase in eating wheat IS what caused my illness. This new diagnosis was a surprise, since I thought I was merely wheat-intolerant since I don't have any of the classic celiac symptoms.   I hope the readers of this blog who have any AI disease be tested for celiac.  I chose to NOT do the intestinal biopsy, for I feel it is cruel and harmful.  The fact that I tested positive on a blood test panel after giving up wheat for more than a month indicates to me I have a real problem.  Now, in addition to being 100% percent (vs. 95%) wheat-free, I am also gluten free.