Tuesday, May 20, 2008

Congratulations: You have coeliac disease!

It may come as a surprise to find that not all people with coeliac disease sit on the loo for all of their lives until the time they get a diagnosis. In fact they perceive themselves as healthy, if it's occult enough.

I posted on what I though of the neurology department at the Queen's Medical Centre in Nottingham when it comes to gluten ataxia

Go to Sheffield!!!!!

Now I've stumbled across this glowing account of the benefits of occult coeliac disease, again from the Queen's Medical Centre, Nottingham. Here are a few snippets from the main text:

"EMA positive participants (n=87) were on average slightly lighter by 2.2 kg (p=0.08), were more likely to have reported their general health as being good or excellent"

"EMA positivity was associated with an 8% reduction in mean serum cholesterol (0.5 mmol/l; p less than 0.01) and reductions in mean haemoglobin (0.3 g/dl; p less than 0.01)"

"Those affected report "better health" but they do have an increased risk of osteoporosis and mild anaemia. In contrast, they have a favourable cardiovascular risk profile that may afford protection from ischaemic heart disease and stroke"

"The important finding of a favourable cardiovascular risk profile in these individuals suggests that any screening programme of the general population would need to be carefully evaluated in terms of risks and benefits before its introduction"

That last snippet needs to be read very carefully.

To summarise: In Nottingham, undiagnosed coeliac disease is good for you. Never mind the occasional fracture, bowel cancer or auto immune neuropathy. And I'm trying not to grind my teeth at the stupid glee over lower than average total cholesterol (in a predominantly female population!). It's obviously better to die of bowel cancer than a heart attack. Well, if you're a Nottingham epidemiologist that seems to be the case.

Let's just head over to Northern Ireland for a while (rather than Sheffield, we want a more general overview this time). The first point is that the anti-endomysial antibody test is pretty rubbish. To quote McMillan et al:

"EmA-negative coeliac disease is common. Reliance on EmA testing to select patients for biopsy will result in significant underdiagnosis"

So obviously the benefits of coeliac disease, so popular at the Queen's Medical Centre, are more widespread than we realise! Certainly in Northern Ireland. Unfortunately there are certain benefits of occult coeliac disease which Nottingham forgot to mention, particularly death! Again from Belfast:

"Patients with coeliac disease or gluten sensitivity had higher mortality rates than the Northern Ireland population. This association persists more than one year after diagnosis in patients testing positive for anti-gliadin antibodies"

What is meant by "gluten sensitivity"?

"There were 1133 patients who tested positive for anti-gliadin antibodies and they were defined as gluten sensitive"

This later group would not even be considered by Nottingham as being unwell because they don't usually have gut pathology and their anti-gliadin antibodies come and go. How common is this category of sensitivity? McMillan again:

"The results establish that IgA antigliadin antibody prevalence is high at 5.7%"

That's one in eighteen people.

Using an antibody test. Antibody positive patients will only be the very big tip of a massive iceberg. One you start looking at how the innate immune system functions, with its NK cells that don't use antibodies, when challenged by gluten, you have to wonder whether anyone is immune to gluten damage.

You can guess what I think.

BTW If anyone got down to the comments of the gluten ataxia post and read those by Toxic, you can get an idea of how clued up Nottinghamshire seems to be when presented with a person suffering full blown, antibody positive, severe, multisystem gluten damage. They missed it. Lots of times. Not sure if Toxic attended the Queen's Medical Centre, but I'd guess so.

Peter

36 comments:

Bloggeier said...

Hi Peter

Have you read this study?
http://www.ncbi.nlm.nih.gov/pubmed/17302893?dopt=AbstractPlus

I beleave they now are developing a new test for non-IgE and non-RAST, non-skin Prick-tests reactions to casein, gluten and other proteins in cooperation with Haukland sykehus (A Berstad).

Berstad has previously published this study, where a similar allergic reaction in the gut is discussed.

Arslan G, Lillestøl K, Mulahasanovic A, Florvaag E, Berstad A.

Food hypersensitivity reactions visualised by ultrasonography and magnetic resonance
imaging in a patients lacking systemic food-specific IgE. Digestion 2006; 73: 111- 115.

I don´t know if that will make any difference, but it´s another way of finding out if your allergic/intolerant.


And then you have this letter:
Is gliadin really safe for non-coeliac individuals? Production of interleukin 15 in biopsy culture from non-coeliac individuals challenged with gliadin peptides.

http://gut.bmj.com/cgi/content/full/56/6/889

PMid: 17519496

Toxic said...

Hi Peter,

Yes, I am living proof - only just - of the completely barking-mad attitude to coeliac disease that prevails in Nottinghamshire. No one here knows anything about it. As I've already told you, I may as well have had a neon sign over my head announcing, "THIS WOMAN IS DYING FROM COELIAC DISEASE". It would have made no difference. Even when it was pointed out, my doctors couldn't see it.

Before I was diagnosed in Northern Ireland, I had undergone all manner of curious investigations in Nottinghamshire for my typical coeliac symptoms. My atypical symptoms they simply chose to ignore. And I used to take bucket-loads of drugs to try and get through the day. I've had an unnecessary appendectomy, and two unnecessary operations on my ovaries. My bone pain was put down to age and being overweight. My swollen stomach was put down to a hernia (that would have been some hernia. My waist dropped by eight inches in the first week I gave up gluten). I could go on, but there's no point. Nottinghamshire doctors will not pay attention to this nor try to improve their service. I was rounded on for having the audacity to have a common autoimmune condition. They were ANGRY with me for finding out that I had coeliac disease.

If you live in Nottinghamshire, even your Waitrose delivery man will know more about your digestive health than your doctor. Mine pointed out to me that it was wrong for me to be buying five or six bottles of Gaviscon a week; something my doctors appeared to think was normal.

This is how I eventually found my own disease (from reputable sources like The Lancet and GUT magazine etc):

an article about good response to Atkins being a novel presentation of coeliac disease. I had only ever been well on Atkins - no wonder.

an article about coeliacs having unnecessary surgeries. I had undergone plenty.

a paper from Northern Ireland that said coeliacs weren't stereotypically skinny - over a third were overweight at diagnosis.

A very detailed article about pins and needles and gluten ataxia - both of which still blight my life.

An article about the waterworks problems brought about by coeliac disease.

Why am I so angry and frustrated? Well, if I can diagnose it, using only Google, come on now. Surely doctors can diagnose it - they've been to school for this?

Do you know what I think the biggest barrier to diagnosis is - especially for the older coeliac? Doctors get impatient with patients who keep coming back, pointedly not cured. I think it's a psychological problem with doctors and they need to overcome it. But that annoying patient - well that should be the first clue. The coeliac is always ill with things that refuse to be fixed. Think a patient's got an infection, but antibiotics don't clear it up? It could be coeliac disease! Suspect a waterworks infection, but the results are clear? It could be coeliac disease! Inflammatory markers up in someone who looks ok? It could be coeliac disease. Patient throwing a bunch of thyroid-like symptoms, but the bloods are ok? It could be coeliac disease. Look for spotty faces, spotty bottoms, spotty legs and spotty backs. Sore tongues and sores up noses. Cracks in the corner of the mouth. Aching legs and crushing breathlessness. Patients who use four inhalers a week. Patients who eat a pack of Losec a day. Patients who are weeing all night long. Baffled patients who cry while telling you about their wonderful life and husbands. Fat people who eat nothing but can't lose weight. Thin people who eat everything but can't put weight on. Patients dragging one foot. Patients who don't drink, but with crippling gout. Patients with reflux that isn't fixed by medicine or controlled eating. COELIAC COELIAC COELIAC COELIAC COELIAC. Suspect coeliac always. Test, by all means, but as the first step in a process with many steps to diagnosis. Use the gluten-free diet before giving up on coeliac disease as the strongest contender in the diagnosis stakes. The gluten-free diet is the ultimate test. The impact can be dramatic.

Any doctor who thinks he has found all his coeliacs is a fool. Testing of donated blood revealed that only fifteen per cent of coeliacs know they have it. Doctors, if you have to, do it by numbers. Count your patients, and divide the number by 100 to get a very rough idea of how many coeliacs you should be looking for. And if you don't, THEN HUNT THEM DOWN.

Once you find your them, be professional. Give the patient something written that can be sent to the wider family, so that others suffering can be tested and, if coeliac disease is suspected, saved from their disease. Believe me, there will be others.

Want to be a super doctor? Have the courage to dredge through the records of patients who died of bowel and other cancers, who might just have had coeliac disease. (Don't rely on their having been tested, because in Nottinghamshire, really, they won't have been). You might be able to save some of their children and brothers and sisters.

All the papers says that undiagnosed coeliac disease causes "considerable morbidity". This means being so weak that you couldn't even hold your new baby beyond the first week.... being unable to go out of the house for years, because it felt too far even to the car, so bad was your fatigue. Considerable morbidity means trying not to die during the night from inhaling your own vomit, no matter what you ate and how early in the day you stopped eating. Considerable morbidity means the loss of a career, and even the one you replaced it with. Considerable morbidity means operation after operation only to find oneself much worse after each.

Coeliac disease is not good for one. Any hospital that thinks it might be should be closed forthwith as a danger to its patients. Coeliac disease can be deadly. It very nearly killed me, and for all I know, it may still.

Bruce K said...

Peter, what does Dr. JK think about gluten? From reading his website, I got the impression that he felt the best carbs were peeled potatoes and white flour. His diet probably gets rid of yeast, which may be a factor in celiac. Most breads are yeasted. Most commercial grain products have been bleached and enriched and they also have lots of preservatives and additives. Does JK say to get flour that is unbleached and unfortified?

Is gluten more problematic with the whole grains or refined? You had an article about wheat germ agglutins, but the germ is only found in whole grains, right? Do you disagree with JK's position? Does he warn against eating gluten? Do you feel it's bad in the context of his diet?

Frank said...

Toxic, half your symptoms could be caused by concomitant B12 deficiency due to malabsorption. If you get a serum B12 done also ask for MMA and homocysteine levels. The lower B12 cutoff point is woefully low - the Japanese (who have done most B12 research) consider anything under 500 pmol/L inadequate. Also important is that cyanocobalamin and hydroxocobalamin (in the injections) are B12 analogues and have to be methylated and adenosylated to become bioactive. Methylcobalamin and adenosylcobalamin sublingual are far more effective.

Peter said...

Bruce,

Dr K doesn't worry about gluten at all. He avoids fiber, which means no whole grains, so minimal WGA. Total gluten dose is low because total carb dose is low, but beyond this he has no concerns. Can't see any concerns of his re casein either. I don't go along with this.

I personally can't see any avoiding the toxicity of gluten. It's possible that the innate immune effects may be dose related, but why bother trying? Potatoes are fine for me. We use tapioca flour for dusting if needed. No idea re toxicity of this. Not a grain.

Hi Frank,

Never even thought of this. Obviously any cat or dog with known malabsorption or chronic GI upset would be tested for B12 and folate routinely, as part of their work up. You kinda forget how slapdash the medics can be. The flip side is a friend's father who was treated by a neurologist for 2 years using B12 for a mysterious peripheral neuropathy before someone realised he was a type 2 diabetic. The heart attack was a hint I suppose.

Hi Toxic,

Can never follow up after your comments! But I'd just like to ask about water works problems. As far as I'm concerned interstitial cystitis is coeliac disease of the bladder, but I can't find the evidence for this on pubmed, some hints, but nothing convincing. Any hard data on this one?

BTW my father died of bowel cancer in Queen's Medical. I'm clinically gluten intolerant though never tested. I've been out of Nottingham for 30 years now. Still like the place, pity about the hospital. My sister has ureteral reflux and hydronephrosis. Luckily she has adequate GFR for a normal creatinine and is now on gluten free LC at my suggestion. I'm very suspicious that the opioids in gluten (maybe casein too?) affect sphincter motility in all sorts of places, ureters, bladder neck, pancreatic and biliary ducts included. Lots of potential problems there.

Hi Bloggeier,

Thanks for the links, I'll stick them up as a brief post for people who don't read comments sections if that's ok. Any chance of the text for the letter to GUT? My feeble Athens account fails again! The multimodal imaging paper is fantastic. These people want to know what's going on!!!

Peter

Toxic said...

Dear Frank,

Thank you so much for that.

For the avoidance of doubt, in my lifetime, I have presented myself to A and E departments in Birmingham and Lincoln - not the QMC. My trip to the latter was on admission and came later. In A & E departments, despite my classic symptoms (with acute gliadin reaction thrown in), no one tested me for coeliac disease. Admission to Lincoln via A and E, a few years ago, resulted in an appendectomy which I requested, because they couldn't think what else to do. (There is a paper about this: about the unnecessary surgeries coeliacs undergo. Sorry, am in a hurry or would provide link.)

The QMC was where I was admitted to be investigated the most recently. Although my stomach problems were terrible, they thought this was being caused by gynae problems - life-threatening problems which might be causing the shocks (!). It was suggested I might have cancer. After the laparoscopy at the QMC, which revealed a lot of mysterious damage but no apparent cancer, I suffered almost complete paralysis in recovery. Then I had a massive gliadin reaction which frightened both nurses and doctors. I must point out here, for those who don't know, that coeliac disease often reveals its deadly head during times of great physical or emotional stress - such as surgery. Anyway... they could not think why I was starting to die.

The overwhelming emotion I have about all this suffering is FRUSTRATION. A doctor is a scientist, after all. Doctors are trained to be curious about - you know, symptoms and diseases and stuff. You have to work very hard to avoid diagnosing coeliac disease in someone as sick as I was.

GPs should have been my front line defenders. But hospital doctors are the elite troops - what were they thinking? It's their job to consider what the G.P. might have missed. But the present system of referral almost guarantees that a coeliac can't get fixed, because the G.P. only mentions in his letter what symptoms he thinks are relevant: and usually he doesn't even KNOW the coeliac symptoms. (My doctor referred me with abdominal pain, to a gynaecologist, failing to mention, even in passing, that I'd had diarrhoea almost constantly for the last ten years). Surely, for very sick people, it would be worth the minor inconvenience of sending all their notes? The specialist who finally explained my coeliac disease to me started with the bronchitis when I was eight.... Come on. Let's give the specialists a clue, here. Don't let's leave it for the pathologist, at post mortem.

I've had a go at G.P.s, because I think they should definitely know better. But hospital doctors, too, behaved very unscientifically towards me. You would have to overlook all your scientific training not to be curious about coeliac disease in someone with my extreme symptoms. Really.

Are you a hospital doctor reading this? Got a patient who spews like the girl in "The Exorcist" and has post-op diarrhoea so bad that it cannot be described in a public forum? Does she have to be readmitted after discharge because of pain so acute she must be sedated just to be carried to the the ambulance? Back in hospital, does she keep pressing the emergency button to report her complete paralysis? (Which was ignored btw.) Have you put her on an antibiotic drip but it's made little difference? Find yourself standing around, biting your nails, watching blood pressure and pulse plummet, and asking the patient if she's any idea what's wrong with her? You know what? Here's a thought. She could have COELIAC DISEASE!

IMPORTANT: think she couldn't because all your esteemed colleagues have seen her first (some privately)? They wouldn't have missed it, right? WRONG!

I believe what saved me was that I was unconscious so couldn't eat. Twenty four hours later I was able to sit up. I refused the QMC's (revolting) food because I have severe latex allergy and had seen the nurse wearing rubber gloves to serve it! She didn't realise that taking the gloves off at the door of my specially-sealed-off latex-free area simply wasn't sufficient to stave off the risk of anaphylaxis.

Something is wrong. Something is badly wrong. And I have no idea who is going to fix it. Coeliac UK is working hard to "educate" doctors. But aren't doctors supposed to be educated already? Would we be this tolerant of their ignorance were they missing any other common disease? We are not talking about some exotic tropical infection here, we are talking about a common autoimmune disease. Over half a million people in the UK have this. Or more.

Why is no one challenging the more bizarre research "conclusions"? I feel embarrassed for them. It's real, "there is a horizon ahead hence the earth is flat" stuff. What's so sad is that time and money is being expended on this. What use is even thorough research if the wrong conclusions are drawn? It makes you think someone else, other than the researchers, should be drawing the conclusions from the results. Don't we all deserve more academic rigour than this? Is there to be a parallel study of "the incidence of cancer and heart attacks in undiagnosed coeliacs we said could go ahead eat up their gluten". I know I am being sarcastic, but humour is a fair trade for what I've been put through, especially considering that other people would have sued!

Incidentally, Peter. "Congratulations: You have coeliac disease!" is the funniest thing I have read on the web in years. More power to you. I hope what you write might help people like me from being left disabled by a disease that, caught early enough, can through diet be "cured".

I am not a doctor and have no idea what half the stuff means. But I found various explanations about waterworks when I first set on the diagnostic journey. That had been my main problem - having to get up to go to the loo repeatedly in the middle of the night, for no apparent reason. I will see if I can track the papers down. At the time I was researching I joined everything, but it was expensive and I've let memberships lapse. But I'll see what I can find.

Best wishes to all.

Toxic said...

Peter,

Sorry about my rant, and for asking about a million rhetorical questions. I promise I am done now. You cannot know how much better I feel after sharing that.

A year after diagnosis I still haven't met another coeliac here, in Notts and the nearest Coeliac UK group I was going to join has closed down. It wouldn't surprise me if it were because of the lack of coeliacs in Nottinghamshire. In fact, Coeliac UK could help with that, couldn't they?; they have all the membership information. If they want to encourage improvements in diagnostic rates they might put up a "membership map" on their web site so everyone can see which counties are diagnosing, and which counties don't really know how. I think I must have been particularly unlucky in Lincoln because their coeliac group approached me to join them instead, when the other closed. They say they have hundreds of members and their gastroenterologist holds a special Coeliac Day day each year for affected kids. It's something, at least, and perhaps that represents hope.

Because they are too personal, I cannot tell you some of the many things that improved in my health - things I had no idea that other people DIDN'T have! I really did have no idea at all how sick I had become, and what poor health I had suffered my whole life, out of ignorance.

The day after I removed gluten from my diet I was eating a salad, and I cried, because I could feel my stomach trying to do something. It was a very big moment - very moving. Until that moment, at the age of 50, I had only ever experienced digestion as pain, noises or movement low down. This was also the first time in my life I had ever felt full after a meal. It was a gluten-free tuna salad and I felt full. Calories are meaningless, aren't they?

My elder son was diagnosed last month. My younger son - I'm still fighting to get him properly investigated. It should be simple shouldn't it? But there are no protocols that I can detect following the diagnosis of a close family member. It's every man for himself, and here's hoping your doctor isn't one of those who refuses to be told what a patient thinks might be wrong on account of his his sister, cousin, auntie etc etc nearly dying of it.

I reported on three separate occasions to two different doctors that I thought my problems were in the same ball park as my mother's Sjogren's Syndrome and her (and my five aunt's) thyroid problems. I actually ASKED did I have an autoimmune condition? I was told, very snippily, NO!

Everything is an uphill struggle with coeliac disease. And almost as funny as Peter's, "Congratulations! You have coeliac disease!" is that when I was diagnosed, I was offered prescriptions for a bunch of carbohydrates made out of fake everything. Loaded with egg, soya, rice, milk, fruit and worse - they were as bad for me as gluten. I paid really dearly for eating the gluten free processed carbs.

As this is my last post, I may as well cover the final thing on my mind. Something like a tax break, or vouchers for fresh fish and meat - now that would really help this coeliac. But fake pizza bases, when I never ate junk before my diagnosis? I don't think so. Why are they giving junk food to coeliacs?

Answers on a postcard please... Just kidding.

Toxic

PS I will try and find that paper on cystitis.

Toxic said...

Hi,

It might not be relevant to this high-level discussion, but this is the paper that made me wonder whether my lifelong bladder problems could have been caused at least in part by coeliac disease. I've been tested for UTIs the whole of my life and they've never been positive. Since going gluten and everything else free, I've been much, much better.

It's obvious that it's all connected. But research is mostly guarded and focuses on a small bunch of cells. We need it to be open and free, and for all the doctors in the world to be looking at the big picture - together. Think I'm a hippy? I don't care. I believe what is discussed in this forum is the answer to half the world's ills. I think Peter, and all the men and women whose research he admires, will be proved right about absolutely everything.

Best wishes to all.

Toxic

http://adc.bmj.com/cgi/content/abstract/archdischild;74/2/170

Bruce K said...

"Can't see any concerns of [JK] re casein either."

True, but he does focus on the fats in dairy more than the proteins and carbs. That's probably a good idea. Butter is the safest dairy product, and possibly the healthiest. I have no fear of casein. I agree that the powdered form is probably toxic, at least in the context of a diet high in refined carbs and PUFA oils. The theory against casein hinges on bad science. Has anybody ever tested it in a study with real food, pref raw milk or yogurt or cheese?

Peter said...

Hi Toxic,

Hee hee, no one expects to be right about everything! But gluten does appear to problem stuff. Thanks for your comments, I'm still following the trail of gluten and cystitis, especially bacteria negative cystitis...

Best wishes

Peter

ItsTheWooo said...

Peter your knowledge and interest in celiac / gluten sensitivity is fascinating to me. I don't know that much about the subject (a bit but not much).

One thing I have always had difficulty reconciling is how it can be possible that gluten intolerance can be common, if not ubiquitous to all humans, when we have been eating wheat for thousands of years?

Carbohydrate sensitivity is easy for me to understand, from an evolutionary perspective, it makes sense. Even if humans had high carbohydrate diets before, we have NEVER had both high carbohydrate and high calorie diets. Carbs, without fats, with starvation levels of energy, do not cause obesity and diabetes. You are sickly and unhealthy, but you don't get the modern diseases of civilization. Only when carb intake is high WITH high energy intake do you get the modern phenomena of massive obesity and other associated inflammatory diseases. I believe our intolerance of high energy, high carbohydrate diets is a vestige from our hunter-gatherer days; the fattening mechanism was adaptive if triggered only during seasonal excesses (the fall season). Obesity is like being stuck in the pre-winter pre-famine fattening mode indefinitely.

So, um, my point is, I really don't see any sort of selective advantage to gluten intolerance, and I would think those genes would have been massively selected against in the past few thousand years. The effects of gluten intolerance are terrible, life threatening (before repro years), they can even cause infertility completely.
I know celiacs; most tend to have numerous and extensive health and/or psychiatric problems, and they tend never to have had children possibly as a consequence of these.

My thinking was, something modern in the environment seems to be causing abnormal immune system function; the problem may not be gluten (or any of the modern common allergies) but rather a defective immune system.

Why do you think it is so common now?
Has it always existed and we never knew about it?

Bruce K said...

ItsTheWoo: "Why do you think [celiac] is so common now? Has it always existed and we never knew about it?"

There are many factors here. Modern diets are deficient and unbalanced, compared to 100 years ago. Life has become more stressful. People don't get enough sleep. We are exposed to pollution and toxic chemicals daily in large amounts. We have reached a critical threshold of stress, where the body can't defend itself.

Frank said...

Toxic you answered your own question on why the doctors didn’t see what was under their noses – because it is a nutritional disease and well, it’s just not very glamorous. No – pills for every ill, or sharpen the scalpel are what they are taught – the idea that “just stopping consuming gluten” is adequate treatment is anathema to them – it’s too bloody simple. Doctors used to get minimal nutrition education (ask Peter – vets know vastly more about nutrition), but a little bird just recently told me that the piffling amount they used to get has been dropped altogether at a nearby large medical school. Many years ago my ex-husband, a doctor (yes I’m female), had difficulty accepting that our younger son was lactose intolerant and didn’t need chronic antihistamines and steroid cream treatment to control his severe eczema – all he needed was to avoid lactose.

Peter, tapioca is also known as manioc or cassava. It’s a high carbohydrate root. It is poisonous raw because it contains linamarin (a cyanogenic glucoside). Depending on how the flour is processed (and I wouldn’t have a clue) it is possible that large amounts might be problematic but I wouldn’t think a “sprinkle” would hurt.

Itsthewoo, gluten intolerance and Coeliac disease (a gluten allergy) are different – the former doesn’t involve the immune system.
I suspect subclinical gluten intolerance is probably quite common, but symptoms may never be severe enough for someone to seek any kind of diagnosis. A specialist allergist told me a couple of years ago that some people have symptoms that are very dose-dependent with gluten intolerance; a person might “tolerate” one slice of bread with no untoward reaction but react badly to 2 slices – how would they ever guess it was gluten?
Agriculture and grains have been only been part of human diet for a blink of an eye in our existence and for some societies this is even less (150-200 years only), and it seems clear that these people are much more affected by modern diet. In many parts of the world those with only recent exposure to gluten, sugar etc. suffer disproportionately from diabetes, obesity, heart disease ESRD and so on. The thing that makes me want to kick health professionals is their advice to Pacific Island peoples that their favourite traditional dish – raw fish in coconut cream (yum yum) is “bad”, and a high-carbohydrate, low fat (esp. saturated) i.e. processed junk is “good”. Well-meaning but essentially misguided health professionals have a lot to answer for.

Anna said...

To Toxic,

As someone who went at least a decade, probably longer, undiagnosed with hypothyroidism and hyperglycemia, I share your frustration at the misdiagnoses and missed opportunities, and being ignored or placated. And I'm very glad you seem to now be knowledgeable and empowered so as to be a strong advocate for yourself and your family, even if you encounter significant hurdles in the medical system. The squeaky wheel gets the grease (but my mother like to remind me it sometimes get replaced, too :-).

But you said, "A doctor is a scientist, after all." I know a lot of people think of their doctors as scientists (there was a recent poll to that affect, too), but I don't see it that way at all, and I'll explain why. I'll probably get some doc's knickers in a wad in the meantime, too. :-)

I'm married to a research scientist (PhD, not an MD), so I've expressed the same frustrations to my husband about some of my doctors' lack of curiousity and ingenuity, too. And from my former work as a graduate school recruiter at a major US research university, I know that the PhD programs seek out very different students than the MD program, because the training and careers are very different.

So actually, medical doctors in clinical practice aren't scientists at all. At one time many years ago (100?), they might have been more scientific, but now they generally are "practitioners", like your auto mechanic and your hairstylist, though undoubtedly with more years of education. They are taught a lot, learn some medical protocol and procedures, and then they spend their careers doing what they are taught, with some continuing education along the way, in a nutshell. In the US, when they make enough money, then they retire to do what they really love and wanted to do before they went to medical school (grow orchids, make music, open a restaurant - ok, I'm being facetious :-).

Yes, there are some medical doctors in clinical practice who also do scientific research, but even then, it is usually "clinical" research, testing a drug or treatment protocol, or perhaps some translational research. There are critical distinctions to these kinds of research and the training each requires.

Medical doctors are generally taught to be somewhat risk-averse throughout their training, despite the ER dramas on TV. In other words, they "play it safe". There are good reasons for that, but the cautious approach also gets in the way of good clinical practice and outcomes sometimes. The clinical "system" tends to push conformity, lack of innovation, CYA practices, and I have begun to think, a general distrust of the patient and what he/she thinks, especially midlife females.

Certainly, the HMO system in the US has stifled a lot of creativity in doctors here, and I imagine the same has happened in universal health care in the UK, too. In fact, the best GP I ever had just left my health care system because he didn't "fit" the system. That was exactly why I liked him, while he wasn't perfect, he was a square peg in a round hole, but the system won't accept square pegs very well.

Scientists doing basic research, on the other hand, are the explorers and thinkers and never or rarely see a patient. Most are PhDs, not MDs, though there are some that hold both degrees and there are a relatively small number of MDs who do basic research. Scientific training is about taking intellectual risks; viewing from another angle; challenging the status quo; and pushing the bounderies of knowledge. Medicine is about applying what has been taught.

I've never really understood how the combined MD-Phd training programs could work well, because the training is so oppositional. But some folks like to collect degrees, I guess.

Clinical medicine (which is what we patients are subjected to) adopts new ideas and practices rather slowly, after the basic researchers learn the specific details (sometimes many years after), and translational researchers put the various details together and into a context that forms a bigger picture, then medicine puts the new info into practice. Along the way, innovation in technologies are developed, too (often the technology precedes the knowledge which can skew medicine, too, with some disastrous results, too). But medical progress is generally a lumbering, slow process and not necessarily smooth. And it often is anything but scientific.

There are reasons why medicine should be slower, too, unless we want Dr. Frankenstein as our GP :-).

If I haven't bored you silly, I have another take on this rant in an old post on my blog:
http://web.mac.com/gandasalvesen/iWeb/Site/Blog/62E6E078-D77E-467B-AAB3-8462B26B832F.html

Best wishes for improved health and better care than what you've been getting.

Lee said...

If you haven't already seen it, you might be interested in DogtorJ's views on gluten and casein. It is not phrased too scientifically and it includes some nonsense but he had my problems down to a tee. His pet/human comments are interesting (he is a vet too).

Peter said...

Hi ItsTheWoo,

There will certainly have been some selection against gluten intolerance but you can't change gene frequency too much in 10,000 years of random breeding humans. The high incidence of gluten intolerance in mediterranean countries fits with this. Italy is a hoptbed of gluten research. The nordic countries even more so as they are very new to gluten.

I don't think that we have ever been gluten tolerant, though the level of activity in out immune system may be under control of things like vitamin D, the level of which is probably lower now than it was. And sugar and PUFA of course.

I think ankylosing spondylitis is probably one skeletal manifestation of coeliac disease and this was rife in ancient Egypt. They probably had IBS too, though this doesn't show in the bony remains. The ancient greeks recognised coeliac disease in is classical juvenile form.

My feeling is that mammalian gut damage is highly advantageous to the wheat plant. Use opioid peptides as a lure to get your seed in to the mammalian gut, use gut damage to get yourself out the other end in tact for re seeding. Chemical warfare is what plants excel at. They don't much care about the well being of the mammals they're manipulating so successfully. Loose a few seeds to transport the bulk.

So I'd plump for vitamin D deficiency as the explanation for the current rise in juvenile type 1 diabetes (coeliac disease of the pancreas, triggered by wheat storage protein WP5212) and the switch to whole grains for the current rise in LADA. You could extend this to many other auto immune diseases, CD included of course.

So it might well be worse now than it was though our added behavioural stupidity, but I think it's been around since ancient Egypt, and it was pretty bad in those days...

Peter

Peter said...

Hi lee,

I've read Dogtor J. As you say, some bits are off the wall, lots are on the mark. I've seen a little success with epilepsy in one or two patients who's owners would put them gluten and additive free. Casein avoidance is easy in canines.

Peter

Douglas Porter said...

Peter

Here is a link to an article at the Weston A Price website on bread and gluten. It also explains some of the changes between modern bread and the original stuff, as well. The article is be Katherine Czapp. Chris Masterjohn contributed some of the sidebar comments.
http://www.westonaprice.org/moderndiseases/gluten-intolerance.html

Porter

Peter said...

Hi Porter,

I think it was that article which pushed me towards sourdough rye bread, made at home from a recipe in Andrew Whitley's book Bread Matters.

Couldn't detox the rye flour enough for my skin... Loved the bread though!

Peter

Peter said...

Anna,

Couldn't agree more re scientists vs doctors. Diametric opposites in the thought processes. The veterinary degree, like medicine, generally forbids thinking. Learn accepted facts until your brain bursts. Tell your professor what he wants to hear or re sit the year.

Peter

Toxic said...

Peter,

I meant to say, I am so sorry about your Dad.

Btw, my mother has ankylosing spondylitis, amongst many other things - all of which you might expect.

Thanks to all who responded to my comments. My son is autistic, so I am used to coping with a condition in the family that most doctors really don't understand. But the gut. Isn't that belt and braces medicine? I had no idea that the gut - something as mechanical as the gut - was embroiled in such controversy.

Amazing.

Best wishes to all.

Toxic

Peter said...

Toxic,

Autism IS a gut problem, or to phrase it better, the things which damage your gut also damage your brain, just as they damage your spine in ankylosing spondylitis. That's not to say that autism is a simple food sensitivity or curable, but the genes for food intolerance are undoubtedly involved. Not just casein and gluten but many fruit and vegetables toxins. Try Emma's blog and her website. Here's the section on autism on the blog.

Ask off blog if you need help translating. I understand some of it.

Peter

Dr. B G said...

Toxic,
I think that you are in the right place! Most carbs are evil... disease-causing chemicals...
And lack of good fats (including saturated) is linked to autism:
http://www.biblelife.org/babyfood.htm


Peter,

Have you seen this??
(btw my father-in-law is improving -- he's on high dose vit D, A, EPA+DHA -- basically high dose cod liver oil -- CoQ10 B12 folate B6 ester-C Mag Ca Zn L-arginine Astaxanthin Grapeseed-extract Pyncgnol & melatonin; it's good that rice is being rationed now in Calif! the only side effects are near TIA-resolution, lower BPs, complete resolution of knee/joints pain (!!), and a spunkiness I haven't seen in 10yrs)

Eur J Clin Nutr 2002 Mar;56 Suppl 1:S19-24

Meat consumption and cancer of the large bowel.
Truswell AS.
Human Nutrition, The University of Sydney, Sydney, Australia. S.Truswell~bioch.usyd.edu.au

Since the major reviews on diet and cancer by the World Cancer Research Fund (WCRF) and by the British Department of Health's Committee on Medical Aspects of Food Policy (COMA) in 1997 and 1998, additional epidemiological studies relating (red) meat consumption and colorectal cancer have been published or found by search. These are collected here. Thirty adequate case-control studies have been published up to 1999 (from 16 different countries). Twenty of them found no significant association of (red) meat with colorectal cancer. Of the remaining 10 studies reporting an association, some obtained statistical significance only in rectal or colon cancers, another only in men, not women, or found a stronger association with pasta and rice, or used an inadequate food list in the food frequency questionnaire. Fifteen cohort studies have now been published. Only in three were significant associations of (red) meat found with colorectal cancer. Two of these positive studies were from the same group in the USA (relative risk 1.7). The results of the third positive study appear to conflict with data from part of the vegetarians follow up mortality study. Here, five groups of vegetarians (in three different countries) with socially matched controls were followed up (total 76 000 people). Mortality from colorectal cancer was not distinguishable between vegetarians and controls. While it is still possible that certain processed meats or sausages (with a variety of added ingredients) or meats cooked at very high temperature carry some risk, the relationship between meats in general and colorectal cancer now looks weaker than the 'probable' status it was judged to have by the WCRF in 1997.

-G

Bruce K said...
This comment has been removed by the author.
Bruce K said...

"I don't think that we have ever been gluten tolerant, though the level of activity in out immune system may be under control of things like vitamin D, the level of which is probably lower now than it was. And sugar and PUFA of course." (Peter)

I'm sure the modern high-PUFA diets (including whole grains: like corn, oats, rice, and wheat) are whipping the immune system into a frenzy. It produces a situation where the body can't even recognize its own tissue and you have one auto-immune malady or another. Avoiding or limiting of grains (esp whole grains) is a good idea for everyone. Eliminate all of the high-PUFA oils completely, too. This is more difficult, because you have to make all of your own foods. Anything you eat in a restaurant or buy in a store is likely to contain PUFA oils or have been be cooked in their presence.

BTW, Peter, any idea why JK says to avoid white rice? His web-site said rice is too high in carbs, but he's fine with potatoes and white flour. Doesn't make much sense. All I have came up with is that rice is smooth and doesn't hold fat like potatoes, and flour. He uses starch as a "fat delivery system," I believe. I have noticed rice doesn't absorb the fat as well as other foods. It seems to me that white rice would be a safer food than white flour. Thoughts?

Peter said...

Can't see the logic to no rice, considering wheat is acceptable. Just goes back to "no gurus", decide for yourself. Just been looking at rice bran agglutinin and it seems it is derived from a common ancestor with WGA. So any rice certainly wants to be white...

Peter

Peter said...

Hi g,

Missed that one! Happily I can get the full text and have a browse. Glad your FIL is improving, scary problem! Stuff has been tooooo frantic at home to get through apo types!!! Got chickens coming and an allotment quarter dug!

All the best

Peter

Bruce K said...

Peter: "no gurus"

Like it or not, you are a guru to a lot of people. Everyone giving diet advice or making proclamations will become a guru to someone.

"decide for yourself"

I've pretty much felt that JK tries to make his diet palatable to folks of Polish descent and there is some cultural bias against incorporating foods from other cultures. But he's still mostly right I think.

Toxic said...

Hi

Thanks to all who commented following mine. Thanks especially to Anna for sharing/explaining.

What a terrible situation we are in at the moment. In 2008, following my experiences, I wish I could just go see a vet instead of a doctor. I don't think I would have been allowed to suffer as much and I think my disease might have been discovered earlier. Admittedly, I might have been put down at some point... LOL!

Best wishes to all.

Toxic

Anna said...

Toxic,

I should also probably balance my comment about MDs not being "scientists" by saying that PhD research scientists are so narrowly focussed these days that they often can't see the forest for the trees, either. They don't see patients, and others translate their results to medicine practice, so while their removed location from practical application is often good for their work in some ways, there are downsides, too.

And the narrow specializations and disciplines often remain so distinct from one another that important knowledge remains unknown beyond a few obscure journals instead of fitted together in an interdisciplinary way to form a less fragmented view of health and illness.

Dr. B G said...

Hi Peter,
The article came from the same link:
http://www.biblelife.org/beef_studies.htm

Were you two separated at birth? He's very precise about the fat breakdown. Your thoughts? I'm impressed -- this gentleman has also heard about EBT heart scans for determining heart disease. And he listed an article from DR. Davis (on niacin).

-G

Peter said...

Hi g,

Been clicking around the biblelife site you mentioned. Some very interesting links/studies there too. I leave religion well alone, so the couple running the site have a very different approach to me, but there is a lot of interesting information there... Not too keen on LF vegetarianism are they!

All the best

Peter

http://www.art-gallery-newzealand.com said...

It's enough to make you want to cry. The research is out there. The sufferers are everywhere and they're dying. I'm so sick of the lack of support and the lack of diagnosis and the reliance on stupid tests that don't even work. I'm so sick of this stupid idea that wheat could even be remotely healthy. And quite frankly I'm frightened of your idea that an all fat diet is good for you. Ketosis is not fun. Just because everybody else stupidly clings to their low fat stupidity doesn't mean we should all swing in the other direction.
I do know two people who were diagnosed by doctors and far more who will never be, mostly due to doctor incompetence. I mean to get a doctor diagnosis you pretty much have to be on your deathbed from starvation. the first almost died on the operating table during the biopsy- and the second had negative everything - because she couldn't actually hold food down at all - and after about three psych reports, apparently when people are vomiting they MUST be crazy, the gastroenterologist finally gave her the genetic test. She was positive for DQ2 and DQ8.
In NZ coeliac is everywhere it affects far more than one in a hundred -- a Canturbury study had triple that number, and they didn't even count all their HD sufferers, so you can imagine how many they missed. Almost no-one else in the rest of the country is diagnosed. I feel like I'm living in a third world country and I'm a third class citizen. No one is ever going to say "You have coeliac." I just have to live it, read the damned labels and get on with it, while knowing there are members of my family killing themselves right now, their doctors happily giving them painkillers and other drugs to mask the symptoms and going out of their way to insist that they don't have coeliac. One glance at my grandfather's medical records would confirm otherwise. It's sick.

So cheers to google, without which I truly don't know if I'd be here. And cheers to all those who post about coeliac, without you guys, googling wouldn't have worked so well.

PS I'm actually AJPonder at livejournal. Please don't post to the work account

Peter said...

Hi Richard,

The blogging software sends updates on a given comments thread only if you have ticked the box asking for them. I'm not sure which email address it uses, or whether deleting the post would stop unwanted emails to the work account...

It's funny how gluten, which was absolutely a "by the way" for me is probably the most widespread and easily managed dietary problem...

Ketosis, full blown deep purple dipsticks, is probably essential for ameliorating Parkinsons, Alzheimers and motor neurone disease. Apart from that, a few ketones to keep your muscles and nerves happy seems to be all you need. Atkins induction is not where it's at for me!

Peter

Bruce K said...

Richard: "And quite frankly I'm frightened of your idea that an all fat diet is good for you. Ketosis is not fun."

The amount of ketones will vary on low-carb diets, depending on which fats you eat. High-sat diet lowers ketones on low-carb diets, while a high-poly diet increases them. So, if you eat beef and butter fat you will have less ketosis than eating flax oil, fish oil, or corn oil. I would rather see people advocating high-fat than high-protein. Eating high-protein is a good way to give yourself rabbit starvation. It can occur if you eat slightly over 40% protein by calories. That does not imply that 30-40% protein is good, either. Many low-carb authors have put too much focus on protein IMO, and it's good that fat is starting to be emphasized more. I would aim for 50% more fat than protein on a low-carb diet, if not 100%.
http://www.jbc.org/cgi/reprint/87/3/651.pdf

"Just because everybody else stupidly clings to their low fat stupidity doesn't mean we should all swing in the other direction."

Combining fats and carbs seems like a very bad idea, esp in the context of the typical modern diet (refined sugars, flours, garbage oils, trans fats). Most people don't think "big picture." Their brains can't handle more than a few ideas at a time, so it's difficult to communicate these complexities. It gets reduced to an extreme, like low-fat, or low carb. Other things are important, too. If low-carb diets are loaded with PUFA oils from mayo, salad dressing, and cooking oils, they will probably be degrading health. I never eat mayo, salad dressing, or any food that is cooked in high-PUFA oils. My intake of soybean oil, corn oil, safflower oil, and other PUFA oils is ZERO. I doubt most low-carbers can say that for their own diets.

twitchyfirefly said...

For those who wanted to read Anna's blog post, now that MobileMe has been discontinued, I found it in the Wayback Machine archive at http://web.archive.org/web/20080820044125/http://web.mac.com/gandasalvesen/iWeb/Site/Blog/62E6E078-D77E-467B-AAB3-8462B26B832F.html