Monday, 15 December 2008

Doctors and Nutrition Part 2: My Wheat Experiment

In part one, My Yellow Skin Mystery, I described how a succession of doctors lacked the nutritional knowledge to spot that carotenoderma was probably at the cause of my yellow skin. This harmless condition is caused by consuming a lot of fruit and vegetables of a certain kind, information I had clearly volunteered during my consultations.

Since changing to a paleo/primal/hunter gatherer diet (and therefore ditching the juicing,) my skin has returned to its former glory - but the low blood counts identified by the doctors when trying to explain the skin colour, remain. The low counts turned out to have nothing to do with the skin colour, yet were a concern to the doctors, who referred me to various haematology doctors.

Here is where we pick up the story. Every 6 months or so, I am obliged to visit the oncology department at my local hospital, yield half a dozen vials of blood, wait while these are analysed, then have an amiable, but ultimately unrewarding conversation with a well-meaning haematologist.
Blood Counts we can't Explain
The condition with which I have been diagnosed is aplastic anemia. You can be diagnosed with this on the basis of your blood counts alone, regardless of whether there are any further symptoms. When I looked into the possible causes I discovered a whole variety, to the extent that one gets the impression aplastic anemia is a euphemism for low blood counts we can't explain.

Since climbing aboard the specialist merry-go-round I have spoken to at least three different consultants, had countless blood tests and, in one memorable episode, been subjected to a bone marrow biopsy. This was necessary to establish whether my low blood counts stemmed from something more sinister in my bones (such as the big C), which as it turned out, it did not.
Laurel and Hardy
In case you are ever in a position where a bone marrow biopsy is necessary, be aware that the clinician-to-patient lexicon is never further from reality than when you have the experience described to you. You know how doctors often talk about a little scratch when they mean the sensation of a needle being pushed into your skin? In this case I was told that it might be a little uncomfortable - which I soon learned translates into you will endure 20 minutes of teeth-clenching pain while the Laurel and Hardy of the haematology world good-humouredly blunder their way through the process of trying to drive a frighteningly large needle into your hip bone.

I am quite sure that in the context of the pain endured daily by many, less fortunate people, this was a walk in the park - but I still chuckle now when I think about the well-intentioned fraud practised by my consultant on that occasion. The icing on the cake was when, on my next visit, I explained how extraordinarily unpleasant the whole ordeal had, in reality, been. Well, it is one of the most painful procedures we do, was her response. As I recall, I was practically stuck mute by the chutzpah of this descriptive u-turn, and therefore unable to make my feelings known.
Protein Power
I am just coming to the end of The Protein Power Life Plan by Drs Michael and Mary Eades. It's a great book, and I will review it in due course. In the chapter The Leak Gut: Diet and the Autoimmune Response, the doctors discuss the theory that proteins called lectins found in grains are able to force their way through the protective barrier of the gut wall, whereupon they are attacked by the cells of our immune system, which see them as foreign. The likeness these lectins bear to other cells in our body lead our immune system, which of course is a fast learner, to turn on itself, causing, over the long term, autoimmune diseases like arthritis.
Bread-Guzzling Population
When I read this I had something of an epiphany. Even though I have only been on a hunter gatherer diet for a little over 12 months, I have not been eating bread in significant amounts for several years. Never really like it. More of a porridge/oatmeal guy.

If the normal ranges against which my blood counts are being evaluated are based on the bread-guzzling general population, then my counts might appear relatively low because in the general population, immune systems are more active.

On my most recent visit to the hospital, I raised the question of diet with my current specialist. Experience has taught me that the direct approach does not tend to work - unless the specialist already has an inkling about a theory, coming right out with it will elicit an expression of benevolent disinterest. So I told him about my diet, being careful to make clear my avoidance of bread, pasta, rice and beans. Ironically, it was the absence of dairy in which he showed any kind of interest and there was certainly no hint that he might be aware of the lectin connection.

So I thought: what if guzzled wheat-based food for 2 weeks prior to my next blood test. Since my counts have been consistently at the same level for a few years, might this be a perfect opportunity to prove or disprove my theory?
Asking Dr Eades
Lacking confidence in my own knowledge and knowing that my theory was probably grossly simplistic, I put it to Dr Michael Eades via a comment on his blog. He kindly responded:

I really don’t know. You may be one of those people who are walking proof of the idea of biologic variability. Most people have blood counts within a certain range (considered normal). You may be one who has low-counts that, while abnormal for others, may be fine for you. Especially since the bone marrow (Ouch! indeed) and the other battery of tests was negative. And you may well be correct about the grains. Since ‘normal’ people consume a ton of grains, and since the ‘normal’ ranges were set by looking at zillions of blood counts from ‘normal’ people, it may be that those on no-grain diets have different counts.

I don’t want to recommend that you load up on bread before your next test because it’s against my religion, but I would be really interested in learning the results of your tests if you do. I’m not sure because I don’t eat much bread and we don’t keep it around the house so I don’t have a loaf to look at, but I think most bread is fortified with folic acid, which could affect blood counts. You could always bake your own to avoid this variable.


So there you have it - my potential wheat experiment. The question is, do I care enough about proving my theory to subject my body to two weeks of gut-bloating wheat guzzling? I had an opportunity to do it last month, but did not dare. I know this may sound strange to someone who has not experienced eating the hunter gatherer diet. Perhaps I will do it early next year.
Doctors and Nutrition
So, once again, I am staggered by the conspicuous absence of knowledge about nutrition in the medical profession. You would expect, given there are strong links between aplastic anemia and autoimmune disease, that a haematology specialist would be aware of the dietary lectins theory - which is, incidentally, widely documented beyond the Eades book.

I know I am on shaky ground here - I have little or no medical knowledge of my own and yes, the specialist might have read Eades' book from cover to cover and dismissed the theory out of hand. Thus, by not mentioning it, maybe he was merely giving me the benefit of his own, expert assessment. But I doubt it. Given that he spent 25 minutes talking about various - by his own admission - tenuous reasons why not eating dairy could be the cause, it would have been odd not to mention other theories.

There's only one way to find out: watch this space next year for an update on the wheat experiment...

See Also:
Doctors and Nutrition Part 1: My Yellow Skin Mystery
My Wheat Experiment Blood Test Update
Doctors and their Good Intentions: the Blood Test Fiasco Continues
[Blood Test Update in Post on Weight Loss]

19 comments:

LOLfitness said...

Give it a go! Some bloating is worth finding out if your anaplastic whatsit is serious or just a byproduct of Paleo, right? Do it for science!

Jeff said...

I too would love to see the result of this, but don't recommend it. I am slightly anemic as well and was also never really a bread guy and now even less since going Paleo since Feb 2008. This post really makes me question what is considered "normal". "Normal" body fat is probably over 20%. At my very healthy 8% I would be considered too thin. Our perceptions are out of whack.

Asclepius said...

Do it! Go wheat for a week!

Kat Eden said...

I like what Jeff says about our perceptions being out of whack. This is a thought that often crosses my mind, whether it's gym boys thinking girls love huge muscles in every conceivable spot, or the general pop thinking that size 12-14 is normal. Or that constant aches and pains are normal. Headaches, lethargy, bloating, fatigue. Oh yes, it's normal, but it's not 'right'. It's so very sad that many if not most people today have forgotten what good healthy and great living is all about .. so very accustomed have we become to living our tiring 'normal' lives.

Oh - and I say go for it if you stand the suffering. Would be fascinating to hear the results. Maybe we need to set up a donation fund to help fund a week of high-quality paleo recovery food for you!!

Methuselah said...

Hi Everyone - thanks for your encouragement. My next test is actually in January. What I am not clear on is how long I need to guzzle wheat for to be sure I would have created any effect it causes. Two weeks feels like the minimum. Whether I go for it this time will depend on the extent to which I am driven to adopt a purist diet to compensate for Christmas garbage eating....!

Son of Grok said...

If food is medicine, and doctors practice medicine... shouldn't doctors know food? Just a thought. Could be why so many doctors are out of shape themselves.

The SoG

Methuselah said...

SOG - you got it in one. Trouble is, they haven't figured out that food is medicine yet. Or that food is probably the root cause of most of the ailments they currently treat with drugs.

Anonymous said...

When I wanted to be tested for gluten intolerance, I was told to eat wheat/grains for at least one month prior. It did not have to be a lot of wheat- just a piece of bread a day. Now, that was for testing something different from what you want tested, but one would think that white blood cells would increase with any amount of trigger food. You don't necessarily have to have a huge jump in the numbers to show the connection, just a change from what you've seen over the last two years.
I really enjoyed this post because it falls into what I've thought for a long time. My example is not as polite as yours, but a few years ago I heard about an Oprah episode where she had a doctor on explaining what 'healthy' poop should look like: a long, 's' shaped, solidly formed movement.
But the 's' standard is based on people who eat an unhealthy diet and imho does not represent a healthy bowel movement.
It goes to point out how many standards of normality are set for us based on abnormal lifestyle. The whole paradigm is wrong!

Methuselah said...

Anon - I really appreciate your sharing this: at least I have a basis for comparison now. I am tempted to go for 2 weeks of lots of wheat in preference to 4 weeks of a little wheat, just so I can get it out of the way and because I have already missed the deadline to start if I want to make it 4 weeks. As it happens I am reading Dangerous Grains by James Braly and Ron Hoggan, which may shed further light on the connection between testig for gluten intolerance and my own proposed experiment.

Continuing the theme of bathroom examples, I often wonder about the supposed "colour of straw" urine test for optimal hydration. Who came up with that and on what basis?!

Cossack in a Kilt said...

Methusaleh:

In the Marine Corps, at boot camp, we had "piss charts" up on the walls of the head (aka toilets), to indicate via visual reference how dehydrated you (we) were. The thing I remember is that they wanted "clear."

Not "straw."

I have no idea if this was based on sound evolutionary/health science but that's what I remember.

Slainte!

Anna said...

Anon, and anyone else interested in being tested for gluten (and some other food protein sensitivities), Stephan of Whole Health Source blog informed me of a lab with a newer, more sensitive testing option that makes a lot more sense than the blood and intestinal biopsies that have been the standard for the past 50 years.

Enterolab (www dot enterolab dot com ) has developed a test that can detect antibodies to wheat, dairy, soy, egg, and yeast much earlier than blood and gut biopsy (before much damage is done), using stool samples. Enterolab also does genetic testing with cheek swabs to determine if the genes that predispose individuals to celiac (which damages the gut) and gluten sensitivity (mediates an auto-immune damage in other tissues, but not necessarily damaging to the gut).

On a hunch, I recently had my son and myself tested (in the US individuals can order the test, except in NY state, which requires a doctor's order). My husband has celiac sprue in his family and I have a low thyroid condition, plus there were other subtle clues that I thought might be linked to gluten issues.

Sure enough we were + to gluten IgA antibodies and anti-tissue transglutaminase IgA, and my son showed some mild fat malabsorption, which can affect micro-nutrient absorption and growth, etc.

But the big surprise to me was that we also were + to anti-casein (a dairy protein) IgA antibodies, which will require a lot more adjustment to eliminate from our diet.

One of my former doctors ordered an expensive panel of food allergy blood tests for me a few years ago and of course, they were negative. But there's a lot of evidence that blood testing is less sensitive unless the damage/immune response is very pronounced/long-standing. Makes more sense to test what is happening in the gut, where the proteins first trigger the immune system, before there is much damage. But this approach is new, and not standard yet.

But it might be worth looking into if you suspect a senstivity to foods that at common triggers (& coincidentally, except for eggs, "new" in the human diet) . Genetic testing is proving these "stone-age genes", are more common than previous suspected, especially in those of European heritage (wheat and dairy cultures). I suspect the research into food protein-mediated auto-immune damage and resultant disease will explode as the technology (and funding) to detect this expands. Italy has such a high rate of gluten sensitivity that much of the cutting edge research is taking place there. It's definitely lagging in the US, where they prefer to focus so narrowly in their medical specialties and fail to see the forest for the trees.

And then again. a gluten-free, casein-free diet, while not convenient, is definitely preferable compared to conventional treatments of powerful steroids, GI surgery, NSAID drugs, and all sorts of misguided interventions for the damage these proteins can cause.

Methuselah said...

Anna - thanks for sharing that - I am really interested in getting Mrs M tested for these sensitivities and indeed a more general food allergy test. Getting this sort of thing arranged via the National Health System in the UK is fiendishly difficult and slow (in our experience), no doubt a symptom of the continuing marginalisation of the idea that diet has a significant role to play in controlling disease. If and when we get some testing done I'll be sure to post on the subject.

Anna said...

It seems to be common that the conventional tests miss a lot of GS, and require eating a lot of wheat prior. If you can do the test from overseas, I'd consider the stool sample test, as one doesn't have to be eating gluten first and you can go around the NHS (though I doubt they'd reimburse you). Also, that test is more sensitive and detects the antibodies long before the blood tests will. To bad you couldn't have done this when you were in the US earlier.


Peter at Hyperlipid blog has some knowledge and experience with gluten sensitivity and the NHS. He has some scathing comments about Nottinghamshire and their failure to recognize and treat celiac/gluten patients, too. If you read those posts, read the comments, too. Eye-opening.

Anti said...

An interesting post. Thanks.

I am a registered nurse, and can tell you from many years of experience that doctors have very little knowledge when it comes to nutrition. Even if they were taught some rudiments of nutrition in school, it likely came from sources that were way behind the times (and had no incentive to catch up). For that matter, neither do doctors.

I must tell you my mistrust of doctors & our health care system in general goes way beyond the area of nutrition, but for the sake of brevity, I'd like to point out one area that just drives me crazy.

I work with elderly patients in a nursing home. One frequent problem is poor appetite (probably related in part to the side effects of many medicines - nausea & upset stomach). In order to counter this problem they are frequently given products like Instant Breakfast and Power Shakes. One look at the labels on these products would tell anyone with any knowledge of nutrition to through them in the garbage. For one thing they are loaded with sugar and high fructose corn syrup.

It's a wonder any of these patients ever survive. Although it does say something about the amazing ability of the human body to correct itself.

Voltaire said, "The art of medicine is in amusing a patient while nature affects the cure." Maybe more doctors need to have this hanging on their wall. It would be much better for the patient than the diploma.

Methuselah said...

Anti - good quote. There are some more here if you are interested: Five Great Quotes about Doctors and Medicine - I should add yours to the list.

Anonymous said...

I am researching the Paleo Diet, and found this story.
I was diagnosed with aplastic anemia in 2006 based on the results of ruling out other causes of my pancytopenia (less across all blood lines), and a bone marrow biopsy.

The diagnosis of AA depends not just on low blood counts, but low cellularity in the bone marrow; that is, a profound reduction in the stem cells that mature into one of the three blood lines.

To know if your Paleo Diet was or was not correlated with your "low" counts, you really need to know what the results of that biopsy were. For reference, my stem cell cellularity was basically zero at diagnosis, when it should have been about 50% for my age. No stem cells, no new blood, regardless of diet.

Methuselah said...

Anon - thanks for sharing that. I did have a biopsy, so they looked at the bone marrow cells. What they are telling me now is that can assume that changes in the blood levels correlate with changes in the activity of the marrow cells - i.e. they don't need to keep testing the marrow cells now that they have done it once.

On that basis, it seems to me that we cannot rule out that the blood counts are changing whilst the cellularity remains static.

If what is required to get a regular read on the marrow cells and therefore better understand whether there are any dietary causes is regular biopsies, I think I'll pass. They are not fun, as I am sure you will attest!

Does that make sense?

Anonymous said...

Hi again,
Do you know what your cellularity was at the time of the biopsy? "Normal" is 100 minus your age. For me at 56, normal would be 44%.

Yes, if your marrow was normal, even after having 7 such biopsies myself (they are almost easy for me now), I would not suggest doing them to monitor the effects of the diet!

But if your marrow was hypocellular, that could be the source of low counts, not changes in diet.

FWIW, a lot of commonly prescribed meds (antibiotics in particular) also have a tendency to suppress bone marrow function.

Methuselah said...

Hi Again - the letter from the specialist says "moderately hypocellular", so not much help there - although clearly enough to tell us this could well be the reason for the counts rather than diet. There was the suspicion that ibuprofen, which I had been taking for an injury, could have triggered a change, but of course never having had any tests prior, no way to prove it.

There is also the possibility that BOTH diet and the cellularity affect the blood counts. I also wonder whether diet could affect the cellularity itself. This is, of course, all sheer guesswork from someone with little medical knowledge - but it's hard not to think like this when there are so many cases of clinicians and researchers not taking seriously the potential effects of diet on medical conditions.

Blog Widget by LinkWithin