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written by reader Responses to Celiac Disease – Gluten-Free Diet Comments

The comments to the pot-stirring post about celiac disease and the gluten-free diet from the inhabitants of Planet Gumshoe require a more comprehensive response than usual, since they touch on just about every kind of interaction between the foods we eat and where we are on the health / illness continuum.

The connection between gluten and celiac disease is a highly specific one, quite different from most other types of reactions to foods, or indeed, from our reactions to most other environmental factors. As Doc Gumshoe tried to explain, gluten triggers an autoimmune reaction that may in some individuals result in atrophy of the villi, which are the little hairlike structures lining our small intestines. These villi are the means through which we absorb nutrients from the mush of stuff passing into the small intestine from the stomach. Without absorption through the villi, we can become seriously malnourished and, in particular, anemic. And, at the same time, the matter left in the small intestine is full of stuff that would normally – that is, in people without celiac disease – have been absorbed and removed from the digestive tract, and thus this matter passes through the large intestine and is expelled as diarrhea of a particularly noxious kind. That’s celiac disease, and, mercifully, clinical celiac disease, resulting in these symptoms, is relatively rare.

Celiac disease is absolutely not the same as wheat allergy, or allergy to any gluten-containing grain, or indeed, allergy of any type. An allergy is a specific kind of reaction, generally involving the release of any of several cytokines from large cells called mast cells. The cytokines in turn trigger a range of immune responses. This happens when something enters our system which has previously been identified as possibly being a harmful invader. To mount an allergic reaction, first the organism has to be primed to recognize the possibly harmful substance – we don’t have allergic reactions to things the very first time we encounter them. As you certainly know, we can have allergic reactions not only to foods, but to things in the air we breathe, and to things that come into contact with our skin. For example, I am violently allergic to East Coast crabmeat, but not to any other seafood – lobster, shrimp, oysters, clams, scallops, mussels, or even Alaska King Crab. But feed me any of those delicious East Coast crabs, and my bronchial passages quickly threaten to shut down, with potentially severe consequences.

Then there is that huge category of foods that some people find it difficult to tolerate, while other people have no problems. My wife, for example, gets migraines occasionally, and has found that monosodium glutamate tends to be a migraine trigger for her, so she stays away from food containing MSG. She has been told by supposedly knowledgeable folks that this is nonsense and that MSG is harmless. Personally, I think that since the glutamate receptor in our brains is known to be associated with epileptic seizures, there is a definite possibility that MSG has a similar mechanism in migraines, so even if there’s no proof, she’s better off avoiding MSG. Therefore, when I go shopping, I read the labels on food products very carefully.

(By the way, I haven’t seen an aisle at the supermarket labeled MSG-free. That hasn’t yet become a trend, I guess.)

And then there is that frustrating, inconvenient dilemma, which is that many or even most foods and nutrients can be both absolutely essential and harmful in excess. We absolutely need salt, but excessive amounts of salt are unquestionably bad for us. We’re equipped with a highly sensitive means of determining the optimum sodium levels in our circulatory system, and when the concentration of sodium exceeds that level, we’re thirsty and take in more fluid to dilute the sodium concentration. We retain the excess fluid in our circulatory system until our kidneys remove the excess sodium from our blood and dispatch it – accompanied by fluid – to the urinary tract, and then you know where it goes. But in the meantime, the increase in fluid intake raises our blood pressure, and, if the excess salt intake is chronic, the increase in blood pressure can become chronic as well – the “new normal,” so to speak – with potentially adverse consequences.

Sugar presents a similar dilemma – or, rather, sugars and carbohydrates that are easily and quickly converted to glucose. Glucose is essential for life. Every cell in our bodies needs glucose as an energy source. Nothing else will work. But we don’t want too much unmetabolized glucose in our bloodstream. The problems it can cause are legion. Doc Gumshoe has discussed them in various blogs, and you are certainly aware of some or most of them. However, it is a gigantic misstatement to call sugar “a poison.

Toxic substances are in a different category. Some substances are so toxic that even tiny quantities can prove fatal. Those are the ones we call “poisons.” I am not going to compose a manual for would-be poisoners here, so I won’t go into detail, but let me just remind you that even some highly toxic substances have been adapted for valuable medicinal uses. The venom of the pit viper, for example, was the basis for the class of blood-pressure medications called ACE inhibitors. When the Brazilian pit viper bites its victim, what happens is that the bitee experiences a sudden and catastrophic drop in blood pressure – enough of a drop in many cases to kill. The discovery of the mechanism led to the development of the first ACE inhibitor, captopril, now no longer used. But this particular relationship – one of many – is an illustration of the principle that “the poison is in the dose.” This is true of many foods. It is a mistake, for instance, to feast on the leaves of the rhubarb plant, which contain an excess of oxalic acid, and can cause internal bleeding. Many leafy greens contain oxalic acid, and people who take anti-clotting medications to protect from the adverse consequences of conditions like atrial fibrillation are warned to go easy on raw greens. And, of course, unless you are an expert mycologist, it is a mistake to eat the mushrooms you see growing in the woods. A few are tasty, most are harmless, but a very small percentage will kill you. And, with the most toxic mushrooms, as with a few other highly toxic substances, the maxim that the poison is in the dose does not apply. In practical terms, there is no dose small enough to be harmless.

But the toxicity of these substances doesn’t depend on an individual’s idiosyncratic reaction. The crab meat to which I am allergic is not toxic to a person without crab allergies, but the oxalic acid in rhubarb, in enough quantity, is toxic, period.

This brings us back to gluten. The gluten intolerance seen in patients with celiac disease is not an allergy. Nor is gluten conceivably toxic. The toxicity of Amanita phalloides applies across the board. It doesn’t trigger an autoimmune response, and it doesn’t set off mast cell degranulation. It kills indiscriminately. With gluten, it’s also not a matter of “the poison is in the dose.” People with celiac disease mount adverse responses – i.e., their intestinal villi are affected – to even small amounts of gluten, whereas the great majority of our species has no problem with gluten, regardless of the dose. (I am not talking here about the adverse consequences of excessive carbohydrate consumption, which is another matter entirely.)

Are there individuals who do not have celiac disease – that is, whose intestinal villi are unaffected and do not have the characteristic clinical symptoms – who are nonetheless gluten-intolerant? I cannot say that there are not, but if there are such individuals, there must be a mechanism through which this non-celiac gluten intolerance operates. As far as I know, no such mechanism has been identified, although a number of possible mechanisms have been proposed. The mechanism for gluten intolerance leading to celiac diseases has been at least partly explained, but, more important, the adverse consequences of this intolerance as manifested in celiac disease is quite well characterized. This is not the case in non-celiac gluten intolerance.

Most of the evidence that I have seen for non-celiac gluten intolerance is of the post hoc propter hoc variety – i.e., “I cut gluten out of my diet and I am now healthy, whereas before, I had a great number of dreadful symptoms, so those must have been caused by the gluten in my diet.” The problem with this line of reasoning is that the connection between the symptoms of ill-health and gluten intolerance is unclear. Is it because gluten makes us gain weight? Is it because the carbohydrates in wheat are metabolized into glucose, resulting in metabolic stress? Are there substances other than gluten causing the symptoms?

While it is certainly possible that some individuals may demonstrate gluten intolerance without the specific symptoms of celiac disease, I find it extremely difficult to accept the position that non-celiac gluten intolerance is widespread. We humans have been depending on wheat for something like 10,000 years – not just consuming wheat, but depending on wheat, as well as on other grains, for survival. The important characteristic of these grains is that they could be stored for long periods; thus, our ancestors could survive winters where there were no fresh fruits and vegetables. Grain that could be stored, along with domesticated animals, made it possible for humans not only to survive but to thrive in climates that were not hospitable to the hunter-gatherer lifestyle. If gluten intolerance were a common human characteristic, our history would have been different.

Doc Gumshoe stands firmly with the contingent that says that good diet is an immensely important part of our health. We are what we eat, and the diet of many of us, not only in the US and other developed regions, but everywhere on the planet, leaves a great deal to be desired. Not only do we consume stuff that we oughtn’t, but we fail to consume stuff that would benefit us. And the guidelines (I’ll say more about those in a future post) are not much help. But on balance it seems to me that the food industry has cottoned to the notion that gluten may be to blame for a lot of health problems, and is pumping up that notion, mostly for their own profit.

And one more thing. There are some persons with celiac disease who do not respond to the gluten-free diet. In an effort to develop a drug that might help those people, Amgen has made a deal with a tiny biotech called Celimmune to do some investigation of their drug AMG714, an IL-15 inhibitor. AMG714 was once upon a time a candidate for treating other autoimmune diseases, but was no better than the other drugs on the market, so it went no place, but it does seem to have some potential in celiac disease. Other pharmas – GSK, AbbVie, and a small biotech called ImmusanT – are also in the running. I’ll keep my ear to the ground.

This is a discussion topic or guest posting submitted by a Stock Gumshoe reader. The content has not been edited or reviewed by Stock Gumshoe, and any opinions expressed are those of the author alone.

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modernrock
Irregular
March 5, 2015 10:40 am

My daughter has Celiac and I disagree that it is relatively rare. It is misdiagnosed usually. Easy fix, don’t eat wheat. We don’t need drugs. Absolute craziness.

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gummydave
gummydave
March 5, 2015 3:10 pm

I thought you might find this article interesting, Doc Gumshoe – http://www.bbc.com/future/story/20150305-the-man-who-gets-drunk-on-chips

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George
Member
George
March 5, 2015 7:12 pm

Nice article which covers many of the issues and realities of Celiac. A few quick thoughts for education and perspective.
1. A disease inflicting ~1% of the US and European population (over 1 billion) is not a rare disease. 10 million compared too many diseases I have worked on with less than 100,000.
2. The disease over the past decades has been slow to diagnose (7 yrs on average but getting better) and is often misdiagnosed. I am guessing that the majority who have it are still undiagnosed.
3. Symptomology is erratic. Many people do not have GI systems but do have neurological symptoms (ex fibromyalgia). This is the case in my family: one has neurological symptoms and the other GI issues. Symptoms also change over time.
4. The knowledge and awareness with doctors and nutritionists is growing but still VERY limited.
a. Testing, compared to the recommendations, is underperformed. I suggest broadening the recommendations to include people which chronic GI issues who have been diagnosed with other GI diseases (for misdiagnosis) and people with a variety of nerve disorders (ex fibro)… at least for the initial blood test.
b. I often find myself educating doctors, nutritionists, pharmacists and other medical professionals.
5. The same can be said for patients.
a. Performing a significant amount of education and support for celiac families, most do not understand how to properly construct a diet or read a label. The questions asked, even from well educate people, show a significant lack of understanding of how to deal with Celiac. The ability to properly read labels and determine if an item is safe or has potential cross contamination (made in a facility with wheat) is uncommon.
b. Many drugs contain gluten. Prescription and OTC meds need to be checked for safety. This includes generics of safe medications. For example, Benadryl is safe but some generics are not. They can also change by batch.
6. The gluten free fad has been problematic for celiac patients.
a. People don’t take celiac disease seriously due to the fad and do not understand the difference between gluten intolerance and celiac.
i. Educating teachers and parents in my child’s classroom has been difficult and met with limited success. Many don’t or refuse to understand how serious it is nor understand with gluten free really is. For them, we often try to compare it to eating a PB&J next to their kid who has a severe peanut allergy.
b. Many of the items labeled ‘gluten free’ are not safe for patients.
i. Recent legislation has enforced a 20 ppm limit for the ‘gluten free’ label on packaged products. This is a great improvement, but some Celiacs are sensitive at lower levels.
ii. Many gluten free items often have an occasional batch which is not safe.
c. Labeling ‘Gluten Free’ on many items that are inherently gluten free appears to be cashing in on the trend but is indirectly helpful when done correctly: they indicate they are not cross contaminated. However, many of these GF labeled products are cross contaminated and unsafe for celiacs. It is very difficult for us to buy mustard because of this.
d. Items labeled ‘Gluten free’ in restaurants typically are not due to cross contamination. Unless there is a dedicated kitchen for gluten free items, these are for the gluten intolerant or gluten free fad dieters. Rice arsenic is a real issue given the amount of rice consumed.
7. A proper gluten free diet is difficult and expensive but becoming cheaper and easier. There are many safe but awful products. We use Amazon for many of our GF products and are heavy vegetable eaters.
8. There a variety of quality sites of information and product testing sites, but penetration into the patient population is limited.
a. Gluten Free Watchdog, Gluten Dude
9. There is evidence that the nature of gluten in wheat has changed over the years to due human selection so the human dependence for 10,000 year argument has issues.

Based on the tone of some comments on the prior thread, my credentials: Multiple members of my family have (properly diagnosed) Celiac; PhD in biology with extensive drug discovery, drug development and immunology experience. Consult for Celiac families (community service). Carrier of the associated MHC.

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modernrock
Irregular
March 6, 2015 9:48 am
Reply to  George

absolutely awesome in depth bullet points!! I went through this with my daughter and have same issues.

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Drano
Guest
Drano
March 6, 2015 10:48 am
Reply to  George

I’m shocked that Doc Gumshoe, whose other posts I have much admired, could say something like ” As far as I know, no such mechanism has been identified, although a number of possible mechanisms have been proposed ” as if this means that therefore those reporting health benefits by avoiding gluten must be wrongheaded, and that anecdotal evidence is not “real” evidence. When New York Magazine first reported what they called “The Gay Plague” (AIDS), the only evidence that there was a new disease was that doctors observed that many of their patients were gay men with a certain type of skin cancer. It was years before the cause of the disease was identified. Why, then, when people report that their symptoms alleviate by avoiding gluten, are they to be disbelieved, and their evidence disregarded?

As far as the claim that because people have been eating wheat for 10,000 years, therefore it must be safe: in fact, 10,000 years is just a blip in human history. Some scientists argue that this is not long enough for adaptation for all people to have developed the ability to digest wheat. In addition, the wheat people are now eating is far different even from the wheat grown 30 years ago. Why is it so difficult to understand that a “new” food is being introduced RIGHT NOW, and that the short 10,000 years of wheat in the human diet may have little to do with the ability of people to eat this newly changed food which is still called “wheat” but is very different that the wheat of 10,0000 years ago?

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Edward Maddox
Edward Maddox
March 6, 2015 11:44 am

Doc Gumshoe, “Unclear” does not equal “untrue”. Please don’t try to make it seem so.

Edward Maddox
Edward Maddox
March 6, 2015 11:39 am
Reply to  Drano

Right on, Drano.

DrKSSMDPhD
March 7, 2015 11:20 am
Reply to  Drano

i am a practicing gastroenterologist and deal constantly with celiac disease. Everything Doc Gumshoe said in this column is quite correct, and attempts at depicting them otherwise are highly misguided.

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Mark
Mark
March 9, 2015 10:36 pm
Reply to  Drano

I agree that the human race evidently evolved over a period of 200,000 years. The concept that the digestive system evolved with the diet that was available during that period makes sense to me. Foods introduced in the last 5,000 to 10,000 years do not set well with everybody because the genes, and intestines produced by those genes adapted to the diet in the local area over many tens of thousands of years. I would guess that going back in lineage for Doc his ancestors did not eat eastern crabs. His lineage must not be native to their habitat. Doctors here in Arizona successfully treat people for food sensitivities and they feel better. Common offenders are the gluten, nightshades, dairy and caffeine depending on the person.

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Ken
Member
Ken
March 17, 2015 1:36 pm
Reply to  Mark

The history of human evoluton is far longer than 200k year. The species Homo sapiens may have been aroung only that long, but the pre-homo sapien primate evolution which lead to Homo sapiens can be traced to at least 4M years ago, perhaps as much as 7 Ma. For a fascinating series of short blogs on human evolutionary history, brain development, and diet go to http://www.gnolls.org but be careful. The site only allows science.

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Donald Bright
March 5, 2015 11:58 pm

Is there a medical test or tests that will indicate if you are gluten intolerant to any degree at all, or is going on a gluten free diet the only way to get any indication. I would really like to take a test if there is one.

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Jestjoan
Member
Jestjoan
March 6, 2015 1:49 pm
Reply to  Donald Bright
DrKSSMDPhD
March 7, 2015 11:22 am
Reply to  Donald Bright

If you came to me with symptoms that are suggestive, I would blood test for you antibodies (mainly IgA anti-tissue transglutaminase) and if positive, ask you to undergo quick upper endoscopy with sedation so that i could obtain small bits of biopsy tissue from your duodenum to confirm/verify/prove. If you will tell me where you live, I might have a colleague to whom I could direct you.

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Jim Cullipher
Guest
Jim Cullipher
March 8, 2015 9:29 pm
Reply to  Donald Bright

There is a stool test available from Entero Labs in Texas (enterolab.com).

Mark
Mark
March 9, 2015 10:39 pm
Reply to  Donald Bright

Yes a test for Gliadin I think. This Doctor did it for me:

MindBody Medicine Center – Ronald Peters M.D
Address: 13951 N Scottsdale Rd #100, Scottsdale, AZ 85254
Phone:(480) 607-7999

Norman Smith
Member
Norman Smith
March 6, 2015 9:51 am

For anyone interested `I recommend two books by Dr. Kieth Scott-Mumby (google him to get web site) Diet Wise and Fire in the Belly about $25 each very informative and will most certainly solve your problems. I am in no way associated other than I read his daily free emails thereby gaining a lot of insight into many medical problems.

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Edward Maddox
Edward Maddox
March 6, 2015 12:00 pm
Reply to  Norman Smith

Norman Smith, a hint for you.
I too read Kieth Scott-Mumby and get valuable information from his email and writings.
When a book of the doctor’s is offered for sale, try going to Amazon and see if you can get that book for less money, perhaps as a used-but-good one. I often benefit by that move when a book is offered for sale.

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rosemary gaskell
Member
rosemary gaskell
March 6, 2015 10:00 am

We may have been eating wheat for thousands of years, but our forefathers weren’t eating franken wheat. That is wheat that was cross bread in the 1930’s with three or four foreign wheat strains so that it had a shorter, thicker stem to withstand storm damage, and a larger ear to up yield. One of the strains used had an aggressive protein attached to the gluten, this is, I believe, what damages the villi in the digestive track. To add to this, Grandma would raise her bread dough two or three times. Each time the dough rises the yeast uses the gluten to fuel the raise. Today, most bread manufacturers use quick raising yeast and only raises the dough once. So we now have a more aggressive gluten plus less gluten gobbled up by the yeast in the baking. The bread eating game has changed and so has our response to it.

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Edward Maddox
Edward Maddox
March 6, 2015 12:22 pm

Rosemary, I’m afraid you have some things mixed up a bit. In wheat bread, gluten is a binder, not a riser. Even if bread dough is made with yeast, it will not rise satisfactorly without some binder to hold the dough together. Gluten provides the binding action that makes the bread stick together and be “chewy”. The rising of bread is caused by the gas bubbles provided by yeast. Gluten is not consumed by rising or in the baking. When making a bread with a flour that does not contain gluten, one has to provide another binder to get a satisfactory result from the yeast’s rising and to satisfy our taste for chewy-ness. Such binders include xanthan gum or ground chia seeds.

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Judith Astroff
Guest
Judith Astroff
March 6, 2015 10:07 am

It’s convenient these days for people to label themselves as gluten-intolerant when they are in fact wheat-intolerant.
I almost certainly do not have celiac disease. But I do much better, gastrointestinally, if I don’t eat wheat. This became abundantly clear when a doctor ordered me to use Benefiber as a fiber source. I got progressively sicker, and after three months, I switched to Metamucil, and like magic, all my symptoms disappeared. Yet Benefiber is touted as ‘gluten-free’ (it’s not, it’s <20 ppm gluten). So I don't think it's the gluten per se, but the wheat itself.

Since that episode, I have eaten wheat from time to time with no significant annoying symptoms, but I do notice the difference. So I put this down to allergy, or gastrointestinal flora and fauna balance, or my particular constitution, or the hybrid wheat we have developed for our convenience in the last century. Whatever it is, I stay away.

Nice, clear, informative post, btw.

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George
Member
George
March 6, 2015 2:07 pm

The true diagnosis for celiac is not fun or cheap. However, greater use of the initial blood testing (not the genetic (MHC) markers) should be performed. The initial cost will be offset by avoiding extensive future healthcare costs and improvement in quality of life.

Regarding neurologic symptoms, even though the breadth of symptoms is wide, there is too great an associate with celiac to ignore them. I believe the neurologic symptoms are an indirect effect of the disease and that it would be easier to pin down if they were more consistent in presentation. However, given the number of celiacs with neuro but not GI symptoms and the number of patients with unexplained neuro symptoms, the guidelines for use of the initial blood tests (not the genetic markers) should be broadened.

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DrKSSMDPhD
March 7, 2015 11:25 am
Reply to  George

I differ. The symptoms that matter are those of dietary intolerance and altered bowel habits, and then of iron deficiency anemia. If you haven’t got those, chasing celiac disease for vague neurological reasons is low yield, expensive.

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ELISSA JUNG
Member
ELISSA JUNG
March 6, 2015 1:19 pm

OH, How we love to put labels on things. Allergy, intolerant, gluten free, celiac and last all those tests with letters and numbers. What about just plain common sense. “Every time I eat pasta I get cramps, bloating and many runs to the bathroom.” Forget the tests and labels just stop eating pasta! Then start looking for other items that cause these symptoms and remove them from your diet or your location or even your clothing. The more you become aware of your bodies ‘personality’ the better you can treat/help/improve its function and your life.

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George
Member
George
March 6, 2015 1:57 pm
Reply to  ELISSA JUNG

Oh, if it were that simple. Sometimes it is, but often it isn’t. Depending on the situation, short term removal might not work and most people will not use an elimination diet for months if there is no obvious result. Often people will eliminate wheat, but not gluten.
If you have celiac, it can take many months for the obvious symptoms to resolve post GF diet. They may also not resolve because many people’s GF diet is not really GF but really ‘low gluten’. That is fine for fads or intolerance, but not celiac or (possibly) allergy. It took more than 6 months for my daughters GI issues to resolve and 2 years for my daughters blood markers to stabilize and drop near the ‘normal’ range.

Also, understanding the “why” is important for long term health of the individual and establishing quality public health responses (ex guidelines for diagnostic testing).

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wolfeman
wolfeman
March 6, 2015 2:14 pm

All i know is, I stopped eating wheat and lost 20 pounds ten years ago and haven’t put it back on.

George
Member
George
March 6, 2015 3:28 pm
Reply to  wolfeman

A general warning about personal examples (N=1 observations):
While being a person’s direct experience, people often generalize their observation and, in doing so, mis-ascribe causation while often ignore the underlying or confounding factors.
For example, in response to the above post, I could say both of my family members who stopped eating wheat gained significant weight. Their underlying cause was the increased ability of the intestine to absorb nutrients. This does not conflict with your weight loss, but many will interpret it to be so if just stated the observation.

N=1 observations are generally useful when rolled up in large numbers or pointing out potential areas to explore. They are unreliable in and of themselves. Unfortunately, they are often taken as proof or evidence. Also, correlation does not equal causation, a concept very commonly ignored or misapplied. A recent case is the false autism and vaccine linkage. A simple example is that all people who get in car accidents breathe. However, breathing does not cause car accidents. It is perfectly correlative, but not causative.

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Dr. Paul Keck
Member
Dr. Paul Keck
March 6, 2015 2:47 pm

Dear Michael (AKA: Doc Gumshoe),
I throughly enjoy your stock commentaries, but have issues with some of your comments concerning gluten sensitivity, celiac disease, and wheat. I refer to gluten as “glue”, a protein previously discussed that is used to keep our bread (“glued”) together. Gluten, and wheat are separate, but intertwined issues, creating clinical confusion among health care providers. In the interest of time, the wheat we are consuming today has been genetically modified (GMO). As a reader pointed out, the wheat of 10,000 years ago, in an unaltered state, was 6-7 feet high with 28 chromosomes. The wheat that humans are ingesting today is approximately 4 feet tall (to make it more wind resistant), and has 14 chromosomes. To say that todays genetically modified wheat is not a major causative factor for a lot of our health problems is simply not substantiated clinically or by research. Many individuals that have written in have presented “evidence based” data, that simply concludes that when they avoid wheat, and/ or gluten, they become asymptomatic. Evidence based outcomes have significant clinical implications, many of which are routinely ignored by the practicing health care community. We are taught to treat symptoms, and not causation. Without treating the cause, we are simply “covering up” the problems with lucrative, and primarily synthetic drugs.

More than 67% of Americans surveyed have stated that they want, and deserve to know what foods on their grocery shelves have been genetically modified, in making their purchase decisions. If GMO foods are safe, then why are Monsanto, Syngenta, Kraft, to name only a few of the players, so resistant to mandatory labeling? Why has Asia, New Zealand, Australia, and all of Europe banned the sale of GMO products?

I have found the website NoGMO4Michigan.org to be a valuable and informative site to recommend to people that wish to know more about GMO foods.

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DrKSSMDPhD
March 7, 2015 11:29 am
Reply to  Dr. Paul Keck

Dr Keck, I am a practicing gastroenterologist and everything my colleague Doc Gumshoe wrote is accurate, precise, well-expressed and not in any way distorted by him. It saddens me that our culture has to be so anti-intellectual and band-wagon-biases as to assail a fine writer over its hang-ups, delusions, and anecdotes. Most discussion on celiac disease is pointless emotional twaddle. Doc Gumshoe laid it out for you straight and without distortion and has done a great service to this community for his accuracy. GMO foods are safe, and this is one more instance of people loving to occupy crackerbarrels of discontent.

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dcohn
Member
March 9, 2015 4:12 pm
Reply to  DrKSSMDPhD

HUH. I loved Doc Gumshoe’s article.
BUT why mention this unrelated trivia – GMO food is safe?
I am going to assume it is no problem that we allow chemical companies to patent seeds by “Inventing” new strains and then forcing farmers to buy seeds every year and that is surely part of the “GMO ISSUE”.

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shulamit lazarus
Member
March 7, 2015 2:22 pm
Reply to  Dr. Paul Keck

Hi Doc Gumshoe, I don’t usually put comments in blogs but this one needs a comment. http://www.celiac.com has great articles and I suggest you become educated. Since people put stock in your word I need to speak up so that they are not mislead by what you wrote. I know that you don’t intentionally want to hurt people but downplaying the prevalence of Celiac is hurtful. I suffered many years because of the medical field’s poor awareness of Celiac and the many ways it can manifest that are not GI related. Here are some facts. http://www.celiac.com “Recent studies and advances in diagnosis show that at least 3 million Americans, or about 1 in 133 people have celiac disease, but only 1-in-4,700 is ever diagnosed.”

I am 63 years old and former nurse, now personal transformation specialist and have had celiac all my life that wasn’t diagnosed until a few years ago. I thought I was dying. Everything I ate was turning to water. I was exhausted and felt sickly all the time. I had managed to control my symptoms unknowingly by going on carb free diets, clearing toxic emotional issues and chi kung almost daily for many years. One day that didn’t work anymore. No one knew what was wrong with me. I was told that I had pancreatitis, I thought I had parasites. Since the consciousness about Celiac is so poor, I didn’t know what was wrong and after all tests were negative one smart doctor did a celiac panel test on me and it was positive. More telling than that was my blood tests which came back looking like cancer since the platelets RBC WBC were all low. This was all due to a life time of malabsorption. I had ravaged my intestinal villi with Gluten. Coming form a Jewish background that’s not hard to do with all all the mazoh and barley and rye bread. Anyway the most important thing is that for most of my life I had no symptoms yet I was killing myself. I remember stomach aches as a child and deep leg bone pain but they were called growing pains back then. I was given Pepto-bysmal a as a child. I kept making canker sores easily in my childhood and then as a nurse I didn’t make antibodies to hepatitis B vaccine. I’m sharing this because it turns out that these two issues are common for people with Celiac. Poor immunity shows up in all sorts of ways and can be Celiac but since there is such poor understanding about Celiac no one stop s to think that might be the true cause. I suggest all my clients get a celiac panel since it can masquerade in so many way. Another issue to know about is the DNA mutation MTHFR. This can predispose to Celiac disease and it’s a pretty common DNA mutation. I recently found out I have it and when I looked it up it explained a lot of my health issues through my life. There are many symptoms that people will present with that are a result of the immunity issue that will not look like typical symptoms of Celiac.

I am symptom free since I have given up all gluten except for occasional oats which I am not sure is an issue for me or not since gluten can damage with no symptoms but am still in the process of healing my body from the malnourishment due to the villi damage. I suspect that will take the rest of my life. The many years of undiagnosed Celiac has left my immunity fragile and increasingly sensitive to chemicals and food. The low immunity lead me on cycles of urinary infections that were treated with antibiotics which led to interstitial cystitis and leaky gut syndrome and what was labeled fibromyalgia.

These could have all been prevented I believe if the Celiac was diagnosed when I was a child. I am so happy that there is a growing awareness of Celiac so suffering can be avoided as soon as possible.

I shared with you these things only with the intention to help others who read your blog.

I also know that I am not my body and of years have been symptom free from all of my issues of the past and use natural methods to stay healthy and live is a constant experience of being blessed and live in joy, light and possibility.

Have a blessed day,
Shulamit Lazarus
http://www.LimitFreeSelf.com
Why settle when you can soar!

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Griffin
Griffin
March 7, 2015 4:00 pm

I’ve been following this column because I suffer from food intolerance and there has been some interesting information. I visited your vaunted website http://www.celiac.com to see what information available. What I found was a site whos’ founder evidently has no medical crediantials that he is proud of. He has co-authored one book (on Cerals) and published another on gluten. What the site appears to be oriented to is gluten free diets which follows the founders published expertise. My take away is it is more gluten free hype and I’m not going to wade through it to try and find some golden nuggets of information. If you have some information that is based in science or good clinical data I’d be happy to read it.

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Mark
Mark
March 9, 2015 10:47 pm
Reply to  Dr. Paul Keck

Yes I believe their is a bias towards patentable drugs because money is made off of them and drug reps influence the Doctors.

I also agree that some gluten free foods are not always the most healthful. People would do well to eat more fruits and vegetables and drink water instead of other things many people drink. Don’t worry I am not suggesting prohibition!

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spam
Member
March 6, 2015 6:03 pm

I am non celicac gluten intolerant. The gastroenterologist said my villi ( in my duodenum (endoscope ) ) are intact. Gluten antibodies were identified in my blood. When i eat gluten ( of the monsanto variety ) i am in the toilet with diarrhea within a half of an hour. This started at age 58. I was in the toilet twice after every meal until i eliminated monsanto style gluten. Later a met a confirmed celiac who told me i could eat spelt. I have no reaction spelt, nor do i have a reaction to wheat when I visit europe and eat bread there. Because of this observation i am theorizing that it is the monsanto strain of gluten i am reacting to

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spam
Member
March 6, 2015 6:31 pm

The way my intolerance to gluten was identified was a test for the gluten antibodies in my blood. It is not expensive and was accurate. The endoscope was a waste of time and lead to a misdiagnosis.
If i drink Omission Beer ( gluten removed to below measurable amounts ), one bottle is ok, two bottles things get a little loose, three bottles and it is diarrhea ( this is over a 48 hour period ). The preservative on feta cheese pre crumbled ( sam’s club ) will put me into the toilet within a half of an hour preceded by intestinal pain. I can eat regular Feta cheese (from one block). This is not imaginary. My gluten antibody count is down now since I avoiding all franken wheat products. My gastroenterologist told me there was nothing wrong with me after I told him that i had diarrhea 8 times a day for the last month. yet he would not rely on a blood test.

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Donald Bright
March 6, 2015 9:15 pm

All you member doctors make great comments, but no one will answer my simple question :-
is there a medical test that will show if i am gluten intolerant to any degree, or do i have to go off bread for months to see if it makes any difference.

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DrKSSMDPhD
March 7, 2015 11:30 am
Reply to  Donald Bright

I did answer you Donald up above.

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shulamit lazarus
Member
March 7, 2015 3:48 pm
Reply to  Donald Bright

Hi Donald, there is now a salive test and other tests http://www.celiac.com/articles/22565/1/New-Laboratory-Tests-for-those-with-Gluten-Intolerance/Page1.html
Have a great day!
Shulamit
http://www.LimitFreeSelf.com
Why settle when you can soar!

Ken
Member
Ken
March 17, 2015 1:51 pm
Reply to  Donald Bright

From what I have read, there are three tests:
1) blood test for gluten antibodies – this is the standard. Any doctor should be able to order this test but does not evaluate the question of non-celiac gluten sensitivity. A Kaiser Permanented doctor ordered this test for my spouse.
2) endoscope examination of the villi of the small intestine with a biopsy to confirm villi atrophy. However, some people will only show villi atrophy locally and not throughout the small intestine, so the biopsy (of one spot) is only a confirmatory test and does not rule it out.
3) fecal test for gluten antibodies (anti-bodies that don’t make it into the blood stream in sufficient enough quantities to give a positive blood test. I don’t know where this test can be obtained but it is not standard. Consult an good naturalopathic doctor or O.D.

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Patricia
March 7, 2015 2:49 pm

Good doctors can certainly disagree. Thanks Doc Gumshoe for both these articles, I for one learned a lot. As usual, all readers have to decide which medical experts seem to have their best interests at heart, and make the most sense.

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Drano
Guest
Drano
March 7, 2015 3:41 pm
Reply to  Patricia

I think it’s unfair to talk about choosing doctors “having [the patient’s] best interests at heart.” I believe that most doctors are motivated by wanting to help their patients. Some doctors, however, are unwilling to listen to their patients, assume that the patients can’t be right, and won’t believe anything that conflicts with their own prejudices. I have had the experience of handing a doctor an article from a reputable journal which directly contradicted what the doctor had told me on a previous visit, and the doctor nevertheless disregarded this new research on my next (and last) visit. Some doctors are unable to overcome rigid thinking, and assume that a patient’s observed pattern of illness is of little utility in diagnosis (like the doctor who told a friend that the intense muscle aches he got after starting to take statins “couldn’t possibly be caused” by the drug; of course this is a well-known side effect of statins). It is terribly frustrating when someone is already sick, to have to search for a doctor who is willing to explore all possibilities for a correct diagnosis. Sadly “Dr. House” seems to not exist in the real world. For those interested in reading about the difficulty of having a “syndrome” here is a link to a Yale physician’s blog:
http://www.huffingtonpost.com/david-katz-md/your-syndromes-missing-benefit_b_6815588.html

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Patricia
March 7, 2015 6:23 pm
Reply to  Drano

I understand what you’re saying, I just believe that any doctor who has his/her patients’ best interests at heart will listen, and will attempt to overcome rigid thinking. After all this is life and death, and quality of life, so doctors should try to rise above typical human behavior – typical as in insisting one is right regardless of any contrary evidence.

My own last doctor visit is a case in point. My routine blood test showed a thyroid problem, and immediately she wanted to prescribe something. I told her I’d rather not until I’d tried improving my diet, because that had worked for a thyroid problem before. I’d been lax about taking kelp or any seaweed products for a long time because I hate the taste. I started it back up, about 1/2 tsp a day, and was re-tested a month later. The thyroid results were fine. She looked a little puzzled by the results, but when I started to explain what I’d done, she cut me off in mid-sentence. Not interested, because it was no part of her training and experience. Since she would not even let me complete that sentence, she is no longer my doctor. Hopefully as her career progresses will become a better listener.

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Patricia
March 8, 2015 3:26 pm
Reply to  Patricia

I later realized this post was incomplete, so should explain for some:
1) These bodies we inhabit, and all life forms as we know them, evolved from the sea
2) All matter which composes land was in times past part of, then covered by, oceans
3) Therefore virgin soils were/are rich in iodine and trace minerals
4) Hundreds of years of cultivation depletes the soils
5) Crops grown on depleted soils are deficient in iodine and trace minerals
6) Iodine is essential for thyroid hormone production
7) This is easily remedied, add small amounts of seaweed products to soups & salads
8) Farmers who use some seaweed as fertilizer, or who are farming on truly virgin soils, can be sought out also

http://www.webmd.com/vitamins-supplements/ingredientmono-35-IODINE.aspx?activeIngredientId=35&activeIngredientName=IODINE

http://www.webmd.com/vitamins-supplements/ingredientmono-35-IODINE.aspx?activeIngredientId=35&activeIngredientName=IODINE

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mary
mary
March 8, 2015 5:50 pm
Reply to  Patricia

Thank you for the above posts. I developed low thyroid several years ago and really resent being on a medication. I thought it was because I drank too much tea (5 or so large glasses a year for several decades–did you know tea was once used to combat hyperthyroidism?). Anyway, I cut out the tea but did not get any better. Dr kss has mentioned several times lately the relationship between low iodine and low thyroid but I had not yet had a chance to do any research on possible supplements. I will check my local wal mart for any type of seaweed products and give them a try.

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Patricia
March 8, 2015 9:45 pm
Reply to  Patricia

No I didn’t know that about tea Mary, and now wonder what kind. For a seaweed source I recommend dulse flakes, which can be ordered online – to me they have a milder flavor so aren’t bad in salads and stir fry. I once read that after being on thyroid medication for an extended period, the organ can atrophy because it becomes dependent upon that artificial source of hormones. In other words, why work when the work is being done for it? So it would seem a good idea to work with your doctor if you want to discontinue or taper off the meds. Of course you already know what I think – if your doctor won’t listen to your concerns about achieving maximum health with the least drug use possible – then find a doctor who will.

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Donald Bright
March 7, 2015 10:49 pm

Apologies Dr. Kiss, my eyes are like my stomach – not good, comes with age.

Not the boss
Not the boss
March 8, 2015 9:10 am

Doc Gumshoe – Another great article. With respect to labelling of items as “gluten-free” (even when they’re a type of food which shouldn’t have gluten anyway), that’s actually helpful. For example, we don’t think of turkey as having gluten, but if you read the label closely, you may see that it mentions some “mystery” liquid additive which might or might not include gluten. I want to know for certain that it does not contain gluten before feeding it to my CD relative. Another point concerns the GMO discussion. My CD relative thinks it’s possible that GMO has something to do with his condition, but he says that would be a small price to pay for feeding millions of hungry people around the world. Some people just have a different outlook on life.

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Patricia
March 9, 2015 1:10 pm

Thank you, and what’s wrong with “stirring up a hornet’s nest”! There was plenty of discussion, all sides were heard from, and that’s rarely a bad thing. I think the health field, going back to ancient times, has always been plagued by ignorance and by charlatans. Sometimes the charlatans are pitching useless or dangerous “natural” cures, but sometimes they are highly credentialed and want to prescribe you drugs that aren’t necessary and/or aren’t worth their adverse effects. True preventative medicine is practiced less in the West than elsewhere and I’ve long thought it has a lot to do with who does the studies and what their motivations are. I think it’s less a conspiracy than a shared mindset. We need more pure research with public funding, or foundational funding. I strongly agree with David’s post #24 under your original column:

“There is a great deal of research not funded by the food industry, mostly in Europe, which actually fosters real food, which is double blind and from highly respectable researchers. (referred to in the previously mentioned books on wheat). Follow the money and you will see the scam of American food politics.”

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yayoe
yayoe
March 9, 2015 7:25 pm

Dr. Gumshoe, I agree with your analysis of the relationship between humans and gluten and your restraint in reporting it to the rest of us. But, with all respect to your expertise, I think these topics, not directly related to investment, bring out all the nut cases and drag the rest of us off course. I read Gumshoe to help figure out how to invest my money. Please focus your great medical insight on the bottom line! That’s where your unique combination of skills offers significant appeal. Thanks, again for your interesting articles.

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Travis Johnson, Stock Gumshoe
March 9, 2015 8:47 pm
Reply to  yayoe

Michael doesn’t generally write about investing topics or from a financial perspective, though he’s of course welcome to opine on investment ideas if he wants to.

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Vicki
Vicki
March 15, 2015 2:20 pm

I subscribed to Gumshoe to learn to better invest my money. Much to my surprise, I gained much more. Thank you Michael et al. for educating me on health issues that could potentially lengthen my years.

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Patricia
March 15, 2015 1:18 pm
Reply to  yayoe

Julie, being willing to be called a nut case by folks like you can be very good for one’s health. Back when I first saw your post I was reminded of the “nut case” who warned me to stay away from trans fats in the early ’70s. It only took conventional medicine over 40 years to catch up to the scientific evidence which already existed back then.

When I think of the few people I was directly connected with throughout my life who, rather than just disagree with the idea of avoiding processed foods, felt compelled to call me crazy or nutty, well I’d love to continue discussing it with them but they died too young. That gives me no satisfaction, just frustration. I don’t know specifically who you were referring to as nut cases in this thread, but all I saw were varying opinions and varying sources, some will eventually be proved right, some wrong.

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Ken
Member
Ken
March 17, 2015 2:33 pm

For Doc Gumshoe and all those who think gluten’s effects are limited only to those with celiac and that humans have evolved to tolerate gluten in the 10,000 years of agricultural use, I recommend the following journal paper: Fasino, Alessio, 2011, Zonulin and Its Regulation of Intestinal Barrier Function: The Biological Door to Inflammation, Autoimmunity, and Cancer, Published in Physiological Reviews, 2011 and accessed at:
http://physrev.physiology.org/content/91/1/151.long (free).
Author Affiliation: 1. Mucosal Biology Research Center and Center for Celiac Research, University of Maryland School of Medicine, Baltimore, Maryland.

Basically the author’s research has shown that gluten (in many, perhpas most, individuals) causes the epithelial lining of the small intestine to release zonulin (gluten is not the only thing that does this). Zonulin is a chemical messenger molecule that controls the “tightness” of the tight junctions. Zonulin loosens the tight junctiona, increasing intestinal permeability (potential causing leaky gut syndrome – condition denied by the standard allopathic medical profession for more than 50 years). Increased permeability can allow molecules from food or those produced by intestinal microflora (bacteria, fungi, and viruses) to pass through the intestinal mucosal and epithelial barrier into the blood stream when they normally wouldn’t be allowed to pass. A genetically suceptible individual’s immune system then reacts to those “foreign” molecule by mounting an immune response to those foreign molecules (typically proteins and protein fragments). That immune response may be non-specific enough that the immune response in genetically susceptible individuals can also target similar normal proteins in the body causing everything from a general inflammatory response to allergies to auto-immune diseases to cancer. Since Zonulin also loosens the tight junctions of the single layer of epithelial cells lining blood vessels and capilaries with tight junctions that forms the blood-brain barrier, foreign molecules and particles not normally allowed into the blood stream can also have the potential to cross the blood-brain barrier and cause neurological symtoms or perhaps even neurological autoimmune diseases. Once the immune systems is activated in this way, the bodies of susceptible individuals lack the mechanism to turn off the immune response. The author’s research has identified the specific mutations which allow Type 1 diabetes to develop in suceptible individuals. Type 1 diabetes is an autoimmune disease in which the immune system destroys the insulin producing cells in the pancreas. It may represent a model for all autoimmune diseases.

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