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    Celiac: My Trendy Experience
    By Doug Sweetser | August 29th 2012 12:03 PM | 11 comments | Print | E-mail | Track Comments
    About Doug

    Trying to be a semi-pro amateur physicist (yes I accept special relativity is right!). I _had_ my own effort to unify gravity with other forces in...

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    I am white. I am liberal. I went to a good college, but some might argue that I didn't get a good education. Certainly I like to study science to this day. Let me tell a medical story I went through which might be germane to a blog by Hank, "Celiac: The Trendy Disease For Rich White People". 


    I have always been liberal about eating, as in I eat anything. I was skeptical about all food allergies. I also have insulin dependent diabetes. That is a disease that can kill you any day, but I am approaching my thirtieth year.

    Three summers ago, my energy levels were dropping. That can sound vague, so let me be more precise. I was car pooling with my wife, one of those trendy, liberal things to do.  Note, not only was it cheaper, a good thing, but we could talk, good for the relationship. The drive together was all of a half hour. I had to fight to keep awake. It got to the point where she had to drive after fifteen minutes to avoid me falling asleep at the wheel. That kind of tired. Odd, but that was not going to get me going to the doctor, we had a work around.

    I had a low glucose reaction at two swing dances. I ate food, but my glucose didn't rise. That made NO sense to me. Food in gut MUST go into blood, right?  Where else could it go? It didn't make sense, but that scared me. My one line of defense against a killer low blood glucose reaction is to eat, and that simple system was broken.  That also did not get me to the doctor.

    It was the diarrhea. Three "solid" weeks of it. Lost ten pounds. I went to one of those gastrointestinal specialist in uber liberal Boston. He signed me up for a test where they served me radioactive egg whites (tritium), then watched the gamma rays as the egg whites moved through my gut. Turns out I was not closing the valve at the base of my stomach, a bit of nerve damage that is not unusual for a diabetic.  There is a medicine for it, at least in Canada, not the US.

    He also did the blood work to test for Celiac disease and put me asleep long enough to snake a biopsy roto-rooter like device down my throat to cut out a piece of my small intestine.

    He called me with the news: the blood work had slightly elevated antibodies, and he was able to see a few white blood cells in the intestinal walls.  Based on those tests and my story, he concluded I had celiac disease.

    I took the day off.  I spent most of my in the pantry throwing things away.  Then I made my most expensive journey to Whole Foods Market, spending $350 to restock the pantry with gluten-free products.

    Compared to diabetes, celiac disease is a piece of gluten-free cake.  Have no gluten in the house, then make whatever you want.  Those with celiac disease lobbied the government and food industry to make labels that are relevant to people with food allergies, and largely they have one that effort, bravo for all that difficult work.  My food bill is larger, but it is doable even in the non-Whole Foods grocery stores.

    At restaurants, it is now easier to be gluten-free.  One approach is to order the most expensive item, usually a steak with potatoes.  Salads without croutons often work.  Even better is that many restaurants have gluten-free menus.  Only lobbying efforts did that, so I thank those folks.

    These are the two sets of amino acids my body is reacting to:

    Glutamate-Glutamate-Glutamate-Proline

    Proline-Serine-Glutamate-Glutamate

    My T-cells don't like this particular combination of amino acids.  My T-cells see that in the gut and go on the attack.  In the process they damage the villi that absorb food.  These two stretches of polypeptides are found in the gluten, but not in rice or potatoes.

    Here is the part that surprises me to this day: I was really sick, I felt awful.  I was waisting away.  Yet the diagnosis was based on a slightly elevated antibody count and a few errant cells seen in a biopsy.  I had thought there would be a more black and white test, but that is the state of the art.  It did help explain the previous decade of anemia I had (low iron).  The malnutrition was due to a low-level, decade long assault on my intestine by my immune system.

    After restocking the pantry, the weight loss through diarrhea stopped.  I can now drive myself into work without falling asleep.  I have no idea why in my mid 40's my system shifted the assault into a high enough gear for me to take action.

    Like Lady Gaga, I am on a gluten-free diet hoping to lose 15 pounds and get decent looking abs (I hope to get a pack, less defined that a 6-pack, but far better than the current overhanging gut).  I was able to put on the weight with a gluten-free diet, so I know the presence or absence of gluten is not relevant.  

    I am using two bits of technology.  One is an app from myfitnesspal.com for keeping track of all calories I eat in a day.  There have been many occasions where I say to myself, "Do I actually want to record that?" That little barrier is enough to block some consumption.  All kinds of little extra calorie routines have dropped out of my day because I record data.


    It is the ease of adding data that allows me to do daily recordings.  They have a big database of foods and the calorie breakdown.  I could not do this with paper and pencil, too much work.

    I have also purchased a fitbit from, you guessed it, fitbit.com.  This is a digital pedometer, a device with both an accelerometer and an altimeter.  The altimeter is able to tell if a fight of stairs have been climbed.  Knowing there is a little device that keeps track of the data has changed my behavior.  I work on the second floor.  I had always gone to work by climbing one flight of stairs.  Now I go up to the fourth floor, then down to the second.  I recently got my skydiver badge for doing a thousand floors.  Due to open APIs, the data from fitbit makes its way over to myfitnesspal.

    The real size is about a stick of gum.  Looks like I have done 9 flights of stairs today.

    By eating between 1000 and 1500 calories a day, I am losing weight.  It is impressive how slow the process is.  A good week I will drop a pound, more typical is only a half pound.  The number varies depending on hydration, showing gains in some weeks due to drinking fluids before getting on the scale.  I can see why so many people give up on dieting.  It requires so many small decisions and our bodies want to stay the same.  The loss is so slow it is easy to give up.  ANY time I get a chance to pig out with free food, my body wants to do so.

    Wheat is an excellent source of nutrients, one of the best there is.  Too bad my body fights it.  All the PR work to get this condition known will necessarily lead to errors in self-diagnosis.  One might say self-diagnosis by its very nature has a high error rate.  Anyone who does a self-diagnosis should doubt themselves.

    The broader message I choose to take from Hank's blog is that all forms of self-diagnosis have a high error rate, whatever the condition.

    Comments

    Useful personal story. Based on the anecdotes I've been hearing, shifting to a gluten free diet can either raise or lower weight. Again, this is purely anecdotal, but the stories seem to fall into two camps. (1) For a celiac, as they go gluten free and their intestines heal, they start to absorb food better, and will gain weight if they continue to eat about the same amount of food they did before diagnosis. (2) For a celiac, as they go gluten free and their intestines heal, they start to absorb food better, and may find they are less hungry and more satisfied by less food, thus losing weight. Both versions of the story start at the same point, but have different end points. I am one of those celiacs who initially lost weight on a GF diet. Didn't last long, tho.

    The Stand-Up Physicist
    As far as healing is concerned, I believe the villi which are small, hair-like extensions that vastly increase the surface area of the gut, go from a bad-enough-to-notice state to much less bad.  The immune system does some permanent damage, the villi on average a little shorter which integrated over the entire gut means less area to absorb food.  I do have a working gut now because eating does bring me back from a low blood glucose.  My iron levels are borderline low, but now clear the bar.  Celiac is common with type 1 diabetics due to a correlation with one of the Major Histocompatibility Complexes (MHC), a way immunologist classify our defense systems.

    Averaging out your two anecdotes, it sounds like diagnosing celiac disease is unrelated to future weight gain or loss which would make sense.
    Thor Russell
    Good article. I think people may get the mistaken impression from Hank's blog that gluten intolerance is an on-off thing. I know someone who became gluten intolerant (not lethally so, but enough to avoid it) after an infection. (Other existing allergies got worse also) There are also many instances of people who have been slightly gluten intolerant all their life and not known about it until the condition got worse. They would have benefited to know earlier.  Given this, I can't really see how people avoiding gluten for a few months just to see what happens is a bad thing. That shouldn't make people intolerant to those who are extremely allergic to it. I am sure there are many mildly gluten intolerant people out there who don't know it and would be better off to know. If they then want to make a change in their diet for a slight wellbeing improvement is up to them, but I think such knowledge would be beneficial. 
    Thor Russell
    Gerhard Adam
    The problem is that gluten-free diets may make the individual more gluten-sensitive therefore precluding future testing.  In other words, without a diagnosis, the increased sensitivity may make the reintroduction of gluten intolerable for testing, and consequently there may never be a real diagnosis of the underlying condition(s).  This can be especially problematic if there may be multiple conditions present, of which not all are symptomatic, as well as considerations for diabetes.

    To decide to be gluten-free is easy enough to implement, but if the purpose is to diagnose any possible condition, then it should be done under a doctor's care or awareness.
    Mundus vult decipi
    Thor Russell
    Really, gluten-free diets make someone more gluten sensitive? That sounds pretty counter-intuitive. Do you have evidence to back this up. 
    I was talking about say 2-3 weeks. Going off a certain food for 3 weeks is definitely not going to make you long term intolerant to it in any way that I am aware of.Also when someone has an unknown illness I am aware of doctors suggesting precisely this, namely avoiding certain foods and or making lifestyle changes for a time to see if it has any effect. It also sounds that mild gluten intolerance is real (anecdotal) and cannot be detected by existing tests. It sounds like even extreme gluten intolerance can be missed easily. Subjective reporting sometimes is genuinely the best scientific test in spite of its obvious pitfalls.

    Thor Russell
    Gerhard Adam
    My understanding is that this occurs as a result of the "masking effect" where your liver is no longer producing the enzymes to process the gluten products, so after a few weeks off, the reintroduction of gluten produces a more significant reaction.

    http://www.nowheat.com/grfx/nowheat/celiself.htm
    This link is only anecdotal, but I believe it is also based on the work of Theron Randolph's work in food allergies.
    Mundus vult decipi
    My comment below was supposed to be a reply to that question, too. This is only true if you actually have a gluten problem - as the author of the piece you linked to apparently does. If you don't have a problem, you won't magically become gluten intolerant by not eating it for a couple of weeks. Still better to get tested first, though, if you can.

    Thor Russell
    Hmm sounds interesting and a little strange. If going off a food caused you to tolerate it less for a long time afterwards then I would automatically define you as having some intolerance to it, though of course not the full blown disease. "you may not be able to eat enough of the stuff ever again to get an accurate diagnosis" That would seem to me to be a diagnosis (of some kind of intolerance) in itself! And the subjective "cannot eat enough" a more sensitive test than the supposed scientific one. It certainly isn't a normal response to gluten, so is indicative of something unusual that is worth noting. It also obviously implies that there are degrees of the disease. Some people don't have the gene, have unambiguous but milder symptoms and may not set off the supposed gold standard tests.

    Gluten may be different to other foods in this regard. I developed a dairy allergy when I was young, went off dairy but later have grown out of it after a long period of not drinking it. I don't really see why a mild intolerance to gluten should be treated any differently to any other food. Mum for example can't eat pork but it doesn't count as a medical condition whereas an intolerance to gluten would because gluten is more common. Not eating gluten should really be no different to not eating pork, e.g. a gluten free bun is no more different than ordering fish instead of chicken and should't be seen as special or strange. Pretty much all people will have degrees of intolerance to some "normal" foods where "normal" is defined by the society you live in. 
    Thor Russell
    The Stand-Up Physicist
    I would like my own sister to take "the real test".  That involves regular, daily consumption of gluten.  This is to "get the troops out".  If there is no gluten in the diet, there is no need for an imune response.  While that page has some good points, I dislike the phrase "those toxic grains".  The grains are not toxic in the usual sense of the word.  There remains nutritional value in eating bread.  It is my body that goes on the attack, and it is the attack on a pair of four member polypeptides that causes the problem for my digestive track.  The doctor will need up to two weeks of spiking the immune response to get a clear result.  If a patient's response is that strong, then the blood sample and biopsy might be moved forward.  Any who fear that situation should work out with the doctor ahead of time a rush-to-test plan.  My sister has gone kinda gluten free without getting the biopsy.  I would prefer to have a clear answer even if the tools themselves are a bit vague, but she is her own woman.

    Celiac disease is not an acute condition.  By that I mean people with allergies to bee stings can be plain old dead from their B-cell response to a sting which is why they should carry a EpiPen with them.  Celiac disease will not put people in the ER.  It will put them in the bathroom again and again, but that is different.  T-cell diseases are not drama queens.  More like a toilet queen.  My coworkers were happy with the diagnosis since it dampened my excessive farting.  It was b a d.
    This is anecdotal (my experience, and that of my relatives and celiac support group people) but it does seem that gluten free diets often make people with an actual gluten problem more sensitive to it. Won't do anything to someone that doesn't already have a gluten problem, though. My husband, for example, eats gluten free with me almost all the time because it's easier that way rather than trying to keep his food from contaminating mine, cooking two different meals, etc. Those times when he does eat gluten, there is no noticeable difference in how he feels. For me, my symptoms are much more severe than they used to be, and a much smaller amount of gluten will trigger them.

    There aren't any tests for gluten intolerance, but it's probably still best to see a doctor rather than try an elimination diet on your own. And it's best to get tested for celiac first, in any case.

    vongehr
    Your first reasonable article - he he - congrats. Intriguing story. I can support your point on that simply recording diet and excercise will induce change. I started recording meticulously after ever more problems started to come up about two years ago. Not that I found out what is wrong (I am just slowly working myself to death perhaps) but the diet became better via more awareness about, as you say, things like 'do I want to add the bother of recording that' and the feelings when having to write yet again items that put me way over the reasonable sugar intake.
    About the altimeter: You can walk on the spot inside the elevator, too. ;-)