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Ron Hoggan's Response to Unfortunate "Throwing Out the Wheat" Article in Slate

Celiac.com 07/30/2009 - Here is Dr. Ron Hoggan's response to Slate's unfortunate article "Throwing Out the Wheat" which was written by :

Dear Mr. Engber,

You represented Dr. Fasano as saying:
“For every patient whose intestinal biopsy turns up positive, he says, nine or 10 more test clean but commit to going G-free all the same.”

This ratio is well established in the medical and scientific literature. The rate of gluten sensitivity, as measured by IgA and IgG antibodies against gliadin, (a protein family that is a sub-group of gluten) constitutes about 10% to 12% of the general population.  That is about ten times the rate of celiac disease found in the general population.

These anti-gliadin antibodies (AGA) clearly demonstrate that gliadin proteins or derivative peptides are reaching the bloodstream and sensitizing the immune system to this foreign (non-self) protein.  Many of these gluten sensitive individuals experience all of the same signs and symptoms as celiac patients.

Similarly, you state: “Since there's no way to "prove" a case of gluten-intolerance in the lab...”

This is grossly inaccurate. Although many practitioners will state that AGA are non-specific, I doubt that any of them would argue against the statement that the presence of AGA clearly indicates that gliadin or its fractions have managed to get into the bloodstream. When they say AGA are non-specific, they simply mean that these antibodies are not associated with any specific disease. They seem to be found in a wide range of autoimmune diseases, cancers, and behavioral/psychiatric disorders.

You also say: “If you're paying more attention to what you eat, there's a good chance your symptoms will lessen. That's not because gluten or red meat or another food is damaging your small intestine; it's because eating less makes it easier for your gut to recover.”

This assertion is based on a flawed assumption. Gluten-free foods are much more calorie-dense than those made with gluten. Thus, a common mistake made by those beginning a GF diet is to eat about the same quantities they are used to eating. For instance, if one is in the habit of taking two sandwiches in their lunch, they are likely to pack two gluten free sandwiches. Since the gluten-free bread is much more nutrient dense. Increased nutrient densities apply to pasta, baked goods, and almost all gluten-free substitutes. Thus, the switch to eating a gluten-free diet usually leads to eating less, not more, as you claim in the above statement.

Later you state: “Chances are you'll have reduced your total intake of carbs, and thus the amount of α-amylase in your gut.”  For the reasons stated above, this is also inaccurate.

You go on to say: “In other words, the mere fact of being on a gluten-free diet could make you more sensitive to grains and cereals—which would only reinforce your conviction that you're gluten-intolerant.”

I am not aware of any data indicating a reduction of alpha almylase in the context of a gluten free diet. I would be amazed if you can find any such data. It reflects an assumption about the production and function of amylase that appears indefensible to me.

The low carb craze has followed a very different path to the media, and began with a fellow named Banting in the 1800s whose doctors suggested a low carb diet to him as a means of losing weight. It worked, and he published a pamphlet about it. It saw a resurgence in the form of a ketogenic diet in the 1920s, at Johns Hopkins, as a treatment for epilepsy. Subsequent development of anti-seizure medications during the 1930s left the treatment without any patients, so it was abandoned until 1997 with the airing of First Do No Harm, a movie about one child’s plight and his parents’ struggle to find a treatment for his life threatening seizures.

Meanwhile, research suggested that the growth of insulin sensitive tumors might be stalled by a ketogenic diet, and various case reports and subsequent clinical trials both support that perspective and indicate that most folks won’t maintain such a boring diet.

The gluten-free diet was suggested by a concerned mom in 1932 and it was fully 18 years before Dr. Willem Karel Dickie’s doctoral thesis would be accepted and the world would begin to treat celiac disease with a gluten free diet.

I won’t bore you with the details of this evolution but there are many twists and turns to the story of gaining acceptance of a gluten-free diet for the effective treatment of celiac disease.

Both of these developments occurred quite separately. The two things they have in common are:

   1. They both gained popular notice and support through the Internet, and;
   2. They both defied conventional medical wisdom when they were first considered.

Your graph simply identifies the impact that the Internet has had on democratizing health care.

Your ill-informed attack on a gluten free diet is regrettable because it suggests it is a fad diet rather than a therapeutic one. At best, that will make it more difficult for people to get cooperation when trying to look after their own health by avoiding gluten. At worst, it will dissuade people from sticking to their diets if they believe your false assertion that gluten sensitivity cannot be identified in a lab. It can be, and is, on a very regular basis. 

Your information on celiac disease was mostly well researched and solid, but you clearly did not put any thought or effort into finding out about gluten sensitivity (often called gluten intolerance). I wish you would correct some of this misinformation, as it is really misleading and potentially harmful.



Daniel Engber responded to the above email insisting that “it's impossible to prove gluten intolerance in the lab.” And that “Many of the strongest advocates for those with this condition describe it as one that can only be diagnosed by process of elimination.  Or, to be more specific, by an elimination/reintroduction test.”

He also challenged me asking if
“All those who have AGA are gluten-intolerant?”

Then he said that he just doesn’t believe it. 

Here is my reply:

July  31, 2009

Hi Daniel,
Thanks for your response.

I don't know who these "strongest advocates" are, but your information about elimination/reintroduction testing being the only way gluten sensitivity is absolutely inaccurate. Check with any reputable blood testing lab that does IgA and/or IgG anti-gliadin antibody testing. They will set you right on this score.

The presence of AGA in the bloodstream is clear, incontrovertible evidence that the body is mounting an immune response against gluten. This antibody reflects a delayed-type food sensitivity that is sometimes erroneously called an allergy.  This is gluten sensitivity. It may be transient, chronic, or permanent, but there can be no doubt that it reflects the condition that is referred to as gluten intolerance. Not everyone who is gluten sensitive will show these antibodies but, yes, everyone who shows these antibodies is gluten sensitive. It is a basic principle of immunology that elevated selective antibodies reflect prior or current exposure of these antigens to the bloodstream.

You must have spoken with Alessio Fasano to get that quote. Just ask him about AGA testing. He will tell you the same thing I'm telling you. I have discussed these and related matters with him at some length.

I think you are mistaken in your claim that you linked to anything that Joe Murray said. I'll be very surprised if he has said anywhere that a GF diet leads to eating less (although he has repeatedly said it can cause weight loss in the context of celiac disease). Could you tell me where this link appears?

Nonetheless, even if the volume of food consumed is less (more on that in a moment) the increased caloric density would very likely be offset by the significant increase in caloric density of GF foods. While Dr. Murray has treated and spoken with many more celiac than I have, I'd be willing to wager that I have observed many more of them while eating. :-)
 
Apparently I misunderstood your thesis. I took you to say that public awareness of low-carb/Atkin's dieting and gluten sensitivity followed a largely parallel path because they are both pop culture trends that reflect a kind of hysteria about nutrition that is not based on science. Thus, I offered some data showing that the rise in public awareness of these two nutritional perspectives are based on scientific insights and the rapid increase of public awareness of these issues in 2004 and 2006-2008 was probably the result of improved access to information on the Internet in combination with scientific discoveries during those periods. I should have detailed the discovery and development of serological tests for celiac disease and gluten sensitivity as well as the research that began to reverse the vilification of saturated fats at about the same time.

(snip)

The vast majority of those eating a GF are eating a very high carb diet. On this issue your article is quite misled and misleading. Please take the time to respond again, as I am most interested in that link to Joe Murray's comments. I also urge you to look at the significance and nature of AGA serum antibodies. Gluten sensitivity is readily demonstrated by these simple blood tests.

Best Wishes,    
Ron
 



Monday, August 03, 2009 4:50 PM

Dan replied admitting that he had not, after all, linked to an article by Joe Murray. The link he apparently intended to put in was the following: http://www.montanaceliacsociety.com/physiciansmanual.htm
I responded with the following message:

Mon 8/3/2009 9:02 PM
     
Hi Dan,
I gave you the wrong url. Please try this one:
http://www.celiac.com/gluten-free/index.php?showtopic=60511

I'm wondering how you can continue to assert "it's impossible to prove gluten intolerance in the lab" when I have given you ample information to the contrary as well as directing you to blood testing labs (Great Smokies, Immuo, Imco Diagnostics, etc. etc.) that will verify my assertion. There is also a wealth of information in the peer reviewed medical literature supporting what I'm saying. I'd be happy to provide a list of relevant research reports if you are interested.  

You don't mean to suggest that this quote from Joe Murray somehow justifies your above assertion do you? Just pick up a telephone and give him a call. I'm very confident that he will not support your notion that gluten sensitivity cannot be identified in the lab. Do remember that Dr. Murray is a sub-specialist in celiac disease. He may not be a big fan of assertions of non-celiac gluten sensitivity, but he won't deny that the AGA blood tests establish immune sensitization and hence, gluten sensitivity. Rodney Ford and Marios Hadjivassiliou are a couple of other world renowned researchers who are reporting AGA as a significant marker of serious disease in the absence of celiac disease.

Your assertion that "it's impossible to prove gluten intolerance in the lab" was the lynchpin of your entire article. Without it, you may have to acknowledge that you have just discredited a group of people who, on the basis of solid science, are trying to improve their health. Yet you have set back their relationships with skeptical family members and friends based on your inadequate research.

I really do think that you owe these people a retraction or at least a statement that mitigates some of the damage your article is doing. 

Sincerely,
Ron



Tuesday, August 04, 2009 3:14 AM

Dan responded saying that  he thought we were having a semantic argument.  It became clear to me that he was confusing gluten sensitivity with gluten sensitive enteropathy – which is another name for celiac disease. He thought I was talking about latent  celiac disease.

He insisted again that gluten intolerance is not defined by any standard such as celiac disease is. He went on to say: 

“If you want to define "gluten intolerance" and/or "gluten sensitivity" so it applies to some subgroup of those who suffer from symptoms related to gluten, that's fine with me.  I'm using the phrase "gluten intolerance" to describe all those who experience relief from the gluten-free diet without having been diagnosed with celiac.”

I responded with the following:

From: Ron Hoggan, Ed. D.
Tue 8/4/2009 11:01 AM
To: Daniel Engber
Subject: RE: Throwing Out the Wheat

Hi Dan,

It sounds like you may be confusing gluten sensitive enteropathy with gluten sensitivity. The former is a descriptive name for celiac disease, while the latter indicates an immune system sensitized to gliadin.

Selective antibodies are produced in response to foreign proteins or peptides that have breached a barrier (skin or mucosal) and are now present in the bloodstream or imbedded in self tissues. The immune system reacts as if these foreign proteins were bacterial invaders. (In fact, they are cytotoxic and neurotoxic but that is not at issue here (1, 2). If there was only one event during which gliadin proteins or peptides reached the circulation, as might be the case during a bout of flu, for instance, AGA levels usually diminish quite quickly. Thus, when a person shows elevated levels of AGA, the condition is usually chronic. It indicates that they are leaking gliadin proteins and/or peptides into the bloodstream. Celiac disease only afflicts between 10% and 15% of these people with elevated AGA. Serological tests for celiac disease identify endomysium antibodies (EMA) and tissue transglutaminase (tTG). There is no debate about the foregoing. It is common knowledge and is accepted by the vast majority of researchers and practitioners working in this area.

The controversy comes in when we ask what elevated AGAs mean. Many claim that it is a non-specific finding. That is, AGAs are not diagnostic for celiac disease or any other currently recognized disease. They are much more common among those with autoimmune diseases, AIDS, and several other groups, but they do not provide any clues that will help diagnose a particular illness. AGAs are also found in some apparently healthy individuals. The only condition for which they fairly specific is what is often called a "leaky gut". However, most practitioners do not recognize increased intestinal permeability as a disease entity. There is no debate regarding the connection between elevated AGAs and leakage of gliadin into the body. In the past, the debate has been about whether AGAs are diagnostic for any disease and whether a leaky gut is an issue of any real concern.

However, in the late 90s, researchers at U. Maryland, working to develop a cholera vaccine, found a protein messenger called zonulin. As its presence increases in the intestinal lumen, it relaxes the tight junctions between gut epithelial cells (3). Zonulin is overproduced by some individuals in response to gluten ingestion. It turns out that those with celiac disease, type 1 diabetes, and a variety of autoimmune diseases are particularly inclined to produce excessive quantities of zonulin in response to gluten ingestion (4).      

Similarly, Marios Hadjivassiliou and his neurological research group at the Royal Hallamshire Hospital in Sheffield have found that AGA are elevated in more than half of all patients with neurological disease of unknown origin and only about a third of those have celiac disease. The remaining two thirds are simply gluten sensitive, as identified by AGA (5). 

Variation in zonulin production, from one individual to another, is likely the factor that determines gluten sensitivity.

Gluten sensitivity does not identify celiac disease, latent celiac disease, or any other enteropathy that I'm familiar with. It identifies an immune system sensitized to gluten. Avoidance of gluten in such cases can help to avoid developing additional autoimmunity, just as it sometimes does in celiac disease, but current evidence suggests that it will usually not reverse it once that autoimmunity has begun.   

The use of Rodney Ford's term "gluten syndrome"(2) might well have saved us considerable cyber ink, as we might have been able to begin by disagreeing about the value of a gluten free diet across the gluten syndrom spectrum, rather than taking several emails to determine that you were equating gluten sensitivity with celiac disease.

Best Wishes,
Ron

Sources:

  1. Paganuzzi AS, Zucco F, Cardelli M, de Angelis I, Mattei R, Pino A, Rocca E, Zampaglioni F.Cytotoxic effects of wheat gliadin-derived peptides.Toxicology. 1985 Dec;37(3-4):225-32.
  2. Ford RP.The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
  3. Drago S, El Asmar R, Di Pierro M, Grazia Clemente M, Tripathi A, Sapone A, Thakar M, Iacono G, Carroccio A, D'Agate C, Not T, Zampini L, Catassi C, Fasano A.    Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines.Scand J Gastroenterol. 2006 Apr;41(4):408-19.
  4. Visser J, Rozing J, Sapone A, Lammers K, Fasano A.  Tight junctions, intestinal permeability, and autoimmunity: celiac disease and type 1 diabetes paradigms. Ann N Y Acad Sci. 2009 May;1165:195-205.
  5. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A.  Does cryptic gluten sensitivity play a part in neurological illness?  Lancet. 1996 Feb 10;347(8998):369-71.
  6. Clemente MG, De Virgiliis S, Kang JS, Macatagney R, Musu MP, Di Pierro MR, Drago S, Congia M, Fasano A. Early effects of gliadin on enterocyte intracellular signalling involved in intestinal barrier function.Gut. 2003 Feb;52(2):218-23.


Note:
I should have added that since Dan was using the phrase gluten intolerance “to describe all those who experience relief from the gluten-free diet without having been diagnosed with celiac,”  he has defeated his own argument. If a person has symptoms and they get relief from a gluten free diet, they would have to be pretty self destructive, foolish, or self-indulgent to go back to eating gluten.

In a private email I received from another person, he said: “After reading his original article I had the distinct feeling that a girlfriend of his (or friend/relative) had gone on a gluten-free diet and had recently dumped him--maybe because he wasn't so supportive of this change...but I don't have any proof... :)”

I am most inclined to agree with this poster’s suspicions.

Finally, I forwarded a copy of the letter titled: “Is gliadin really safe for non-coeliac individuals? Production of interleukin 15 in biopsy culture from non-coeliac individuals challenged with gliadin peptides” by D Bernardo1, J A Garrote2, L Fernández-Salazar3, S Riestra4, E Arranz5 from  Gut 2007;56:889-890; doi:10.1136/gut.2006

These investigators report that “gluten elicits its harmful effect” on all the individuals they studied, not just those with celiac disease. I believe that Jefferson Adams has written a detailed account of this research that appears elsewhere on celiac.com. 

Although Mr. Engber declined to give me permission to publicly post his emails, and hence, his side of this discussion, I have invited Dan to respond to the above on celiac.com, as I would like to give him every opportunity to either provide some evidence to support his unfortunate claims about non-celiac gluten sensitivity, or to retract his damaging comments in the original article he penned. Although I have been a little rough on him, I do hope he will present his side of this debate, as it is of great importance to many individuals who must negotiate with friends and relatives to safeguard their health.

These people would not dream of casually scattering rat poison on food to be served to a loved one. However, they seem to feel imposed upon by those who are gluten sensitive, because they do not want gluten scattered on their food. This attitude is just as inappropriate and sometimes, just as dangerous as scattering rat poison on food. 

Sincerely,
Ron Hoggan


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28 Responses:

 
katie
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said this on
30 Jul 2009 2:56:56 PM PST
You forgot to nail him on his comment on how annoying we are to friends, family and coworkers with our 'special' diet! This has been the #1 MOST disturbing thing that has and is happening to us as a family! I hope this guy or one of his kids turns up with celiac disease so he can get a taste of exactly how hard life can be doing the Gluten-Free thing. It is anything but a 'fad diet' and anything but fun to always have to make a spectacle of yourself if you want to eat anywhere but in your own home.

 
KIM
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said this on
10 Aug 2009 7:29:26 AM PST
I totally agree!! After 20 yrs. of gluten free living, I still am most disturbed by this part of my life. Thanks for your response, you nailed it!

 
Roberta
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said this on
10 Aug 2009 10:22:51 PM PST
Katie -- you are so right about that. Sometimes I feel that I'd rather not eat at all than be a "pain in the a__" in a restaurant. Articles like the one in Slate only make it harder.

 
Christy
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said this on
31 Jul 2009 11:45:13 AM PST
Thank you. Very good and clear response.

 
Mary Boucher
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said this on
31 Jul 2009 7:31:57 PM PST
Good - a little too technical for a plain old diagnosed celiac without a medical degree though. Thank you for writing in defense of us celiacs.

 
erin pickering
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said this on
04 Aug 2009 12:10:28 PM PST
Thank you for writing this!! That article in Slate angered me beyond words.

 
Krista
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said this on
06 Aug 2009 12:34:38 PM PST
Well Done!!!

 
E.G.
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said this on
10 Aug 2009 12:19:45 AM PST
I was extremely fortunate to be one of those rare people who tested positive to the non-celiac specific antibodies. My MD at the time, based upon her clinical experience, declared that I was in the same boat as a celiac and should never consume gluten again. I thought she was insane--I didn't want to believe it, and found the idea of being on this diet horrifying. But I was so desperately sick I was willing to try it for a few months. I could go into gory gastrointestinal detail, but I will just say that the change was dramatic. At the time I was developing painful neuropathies in addition to having had lifelong GI discomfort. I also was developing some sort of autoimmune disease that to this day nobody has been able to diagnose. My symptoms and related medical problems so closely mimic what doctors will actually diagnose as celiac disease that it is insane to me that I'm not considered by most other doctors to have actual celiac disease. I hate living with this diet every day, but you couldn't pay me lottery winnings to eat gluten and knowingly make myself that sick again.

I get filled with rage when I read thoughtless junk that insinuates that people on a gluten free diet are misguided faddists. Maybe the medical world, and world at large, should just begin to realize that if people are willing to follow a difficult, grossly expensive, inconvenient and time-consuming dietary regimen that makes them social pariahs, perhaps there's a valid reason for it.

 
Jennifer
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said this on
21 Aug 2009 11:49:46 AM PST
Thanks for your words. I fall into your category too. I tested positive to the non-celiac form of gluten intolerance. I had severe joint pain, endocrine issues, and terrible gastrointestinal problems before I stopped eating gluten.
I am quite hypersensitive to comments from "real celiacs" who say that my kind of sensitivity isn't as real as what they have. It's true that I may not have the intestinal damage, but I did have other health issues that warranted removing gluten from my diet.
I guess it's human nature for people to want to have an identity and feel they are the authentic example of something while others who don't quite fit the scientific definition are simply faddists. It's unfortunate that people think this way. I didn't expect it in the realm of diseases, I thought it just happened with race, ethnicity, religion, sexual orientation, etc. I guess it happens with folks who also have health conditions. Go figure.

 
heidi
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said this on
10 Aug 2009 5:11:31 AM PST
Thanks for taking the time to represent.

 
Roberta
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said this on
10 Aug 2009 10:16:39 PM PST
Thanks so much for keeping on top of things. A lot of people read Slate, so I'm only sorry your responses weren't posted on Slate as well!

 
Kimberly
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said this on
11 Aug 2009 5:14:25 AM PST
Thank you so much! I am the non-celiac family member who struggles daily to have the school and our family actually accept my husband and daughter's gluten free protocol without hostility. When I read the Slate article, I felt completely deflated. "Great," I thought, "Now a whole new group of skeptics and frenemies have been born."

I really appreciate that your response was so comprehensive and persistent.

Thank you, thank you, thank you!

 
Heidi
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said this on
11 Aug 2009 6:19:14 AM PST
I responded to Mr. Engber's article as well by letting him know how damaging his written words are. I must confess that I was not nearly as eloquent as Ron, however I have been met with the same basic response. I applaud you for continuing to press him for a response. I am a Mom of a child with celiac and I informed him that the information and attitude reflected in his article will only set us back a few years with the progress we've made with "ignorant family members and friends not to mention the litany of other people we inconvenience". Thank you for standing firm for all of us!!

 
Jen
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said this on
11 Aug 2009 6:51:40 AM PST
Thank you for trying to set him straight. No one calls Diabetics or people with peanut allergies followers of fad diets. Yet someone who avoids gluten to avoid the damage to our intestines, vitamin absorption, or other health issues... somehow we are on a fad diet. I nearly had to get a blood transfusion because my hemoglobin and iron counts were so low when I was diagnosed, I nearly screamed when I read his article referring to my gluten free diet as me following a fad, likening it to bell bottom pants or a new hairstyle.

THANK YOU !!!!

 
Teresa
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said this on
21 Aug 2009 3:08:21 PM PST
I got such a kick out of this response. My son has both diabetes and celiac disease (ahem, "Gluten Intolerance")....therefore I guess that makes him doubly fashionable!!!!!!! ha ha.

Thanks for the giggle.

 
Dolorres Eilers
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said this on
11 Aug 2009 8:02:00 AM PST
Quite an article. I really enjoyed reading it and it gave me great trust in you.

 
Renee
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said this on
11 Aug 2009 9:10:51 AM PST
I wonder if Daniel Engber is being paid by the wheat industry to write this article in an attempt to down-play the ill effects of gluten on celiacs/gluten intolerants in order to avoid potential profit loss in the wheat market that may occur as the need for wheat free/gluten free food products grows in our society?

 
Kim
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said this on
11 Aug 2009 10:05:27 AM PST
Thank you for this, it has really cleared things up for me as someone who has chosen a gluten free diet with a negative diagnosis. I was found to have AgA in my bloodstream but biopsy said I did not have coeliac. I went to a private lab for a stool test and they told me I have a leaky gut. I also got diagnosed with autoimmune thyroiditis a few years ago - so everything you said links those things together and supports my belief in maintaining a gluten free diet. Its difficult getting people to understand when I don't have a scientific diagnosis but I definitely have improved a bit since I went gluten free. Thanks

 
kathleen castellari
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said this on
11 Aug 2009 10:07:29 AM PST
Dr. Hoggan, thank you for vindicating the gluten sensitive population through your strong and scholarly rebuttal to Daniel Engber's recalcitrant rantings.

 
Nikki Chandler
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said this on
11 Aug 2009 11:38:35 AM PST
When I first read the Slate article, I had the feeling that the author did not like Elisabeth Hasselbeck so he decided to attack her that way. Saying that we can be annoying to family members and friends by having to deal with the diet is similar to 'being annoying to family and friends' when you have any disability.

 
Michelle
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said this on
11 Aug 2009 5:26:04 PM PST
Good response. It is a shame that people can't just eat what they want and not be questioned about it, regardless of whether it is a dislike or an allergy. Everyone has the right to choose what goes in their mouth. My only criticism is the comment about Dan being dumped by his girlfriend... that really had no place in a valid debate and was a cheap shot that brought the entire discussion down to a high school contest about who is more popular. Please keep up the good work on educating people about gluten issues, but keep it clean so that it can be taken seriously. Cheap shots only cheapen the one making them.

 
sarah
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said this on
11 Aug 2009 6:34:43 PM PST
Thank you so much for responding to his article in a way I never could. I was so angry when I read his article on Slate...I too have encountered family who think it's a fad, but they don't have to live with my gut! They get so upset when I try to even mention they too could have it and they refuse to listen...its so sad. Anyways, thank you again!!!

 
Sabina
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said this on
12 Aug 2009 1:56:01 AM PST
Thank you! Articles like Engberg's are extremely damaging. His assertions would be equally preposterous had he suggested sugar to diabetics. Which, of course, being a responsible journalist he would never do. I happen to be one of those "annoying" fad-dieters who can't produce the requisite medical diagnosis for the simple reason that after going gluten-free for one year my quality of life has so dramatically improved that NOTHING could induce me to go back to eating gluten just to "prove" what I already know. I came to the gluten-free diet via a circuitous route--searching form relief from my debilitating Endometriosis (for this I do have medical proof) symptoms. After 20 years of crippling pain, bloating, chronic exhaustion, and a host of gastro-intestinal symptoms I won't bore you with, compounded by the frustration of meeting with blank looks and shrugs from doctors who came up with diagnoses of IBS or "we can't find anything physically wrong with you" I finally know what it is to be "normal," to not be in constant pain. Do I have Celiac disease? Does my body produce antibodies? Honestly, I don't care. What I do know is that I feel healthier, stronger, and happier than ever. And BTW, I have lost weight--and inches--and have been told that I look years younger. Possibly because my face is no longer involuntarily screwed up in pain. Perhaps it is just a fad diet and the placebo effect, but I will steadfastly persist in inconveniencing all and sundry with my dietary requirements, whatever scribes like Mr. E. may produce in future. ;)
Anyway, thanks again!

 
ColoradoSue
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said this on
12 Aug 2009 3:20:12 PM PST
If having celiac disease, gluten sensitivity, or a leaky gut is such a "Fad", I could then understand why the Colorado's Rockies Organization opened an fabulous gluten-free snack bar that is consistently crowded and closes sooner than the rest because they are such a hit. Now did the Rockies open it up to make money or because they had a tremendous call from people from all over the Rocky Mountain Region who would like to go to a game and have food and drink like non-celiac fans. So the next time I want to go to a game, I can go with the knowledge that I can have that hot dog and beer too! (You can't bring food into the stadium, as they do search every bag and covering you may try to bring in with you.)
Being on a guten free diet is not a fad to me or my family members who are also celiacs. We all have gained weight being on the GF diet. We all have to purchase expensive foods because we HAVE NO CHOICE. It's not like being on Nutra System. We all do research, whether it be person-to-person, friends, library, literature, or celebrities who by their own experiences, are just trying to put the word out. And Lord knows we can use as much help as we can get. The more the word gets out, the less I have to explain to others why I have to bring my own food to a function, or to bother a restaurant waiter about a menu, or put up with those who just roll their eye's in disbelief declaring that it's just another fad. It is ignorance when one decides not to truly research before declaring what they know to be the truth. All I can answer to those individuals is, I'm glad you are healthy because you don't want to walk in my shoes!

I was initially diagnosed via blood work and biopsy through Kaiser. The fact that I had lost ten pounds in one week due to diarrhea and suffered several gut pain gave the doctor a pre-diagnosis of celiac disease. But it was the LAB WORK first that sent me to get the biopsy and final diagnosis. The protocol for diagnosis is Lab studies, initial diagnosis, then further testing via biopsy. Nothing hard about that. Pretty standard really, that is if you have a good doctor and/or health organization standing not only behind the doctor but the patient as well.
Ignorance is not bliss! Thanks Dr. Hoggan. Next time your in Denver in the summer, lets go to a Rockies game and have a "Dog & Beer" on me!

 
Daniel Engber
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said this on
15 Aug 2009 1:16:30 PM PST
Scott, thanks for giving me the opportunity to respond on the site. Ron’s letter, printed above, captures the sentiments of many readers of my article -- albeit in more pedantic and pugnacious terms.

I’ll try to address all his points here, but for the sake of efficency let’s skip to the bottom of his disquisition, where he finally gets to the crux of the issue. There he claims that I have “defeated [my] own argument” in the piece, since we all define our own well-being:

“If a person has symptoms and they get relief from a gluten-free diet,” he says, “they would have to be pretty self destructive, foolish, or self-indulgent to go back to eating gluten.”

That is, of course, the central theme of my article: What should we make of the fact that there now appear to be thousands or millions of Americans who are deriving some sort of benefit from going G-free? Is everyone who buys Elizabeth Hasselbeck’s book, or otherwise elects to give up gluten, better off? If someone “gets relief” by going on a diet, then how can I or anyone else possibly argue that they shouldn’t be on that diet?

These are tricky questions, and the answers aren’t as clear-cut as Ron would like them to be. As readers of Celiac.com know all too well, there are many costs -- economic and otherwise -- to being a gluten-free diet. So we’d do well to consider whether some of those who “opt in” are really better off for doing so.

We know that everyone with diagnosed celiac disease must be on a gluten-free diet, 100-percent of the time. It’s also true that anyone with concrete symptoms that can be reliably traced to gluten would do well to avoid gluten. What about the folks whose symptoms are more ambiguous -- the people who feel sluggish, or anxious, or depressed when they have a bowl of pasta?

In my piece, I argued there are many reasons why people might decide that a gluten-free diet is good for them, that have little or nothing to do with autoimmune disease. In particular, I focus on our national obsession with weight loss, and the body dysmorphia that plagues Americans.

It’s worth pointing out that eating disorders affect women far more often than men -- so from that perspective, the relationship between “G-free” and weight loss is primarily a women’s issue. Autoimmune disease is a women’s issue, too: The medical establishment has a long, sad history of ignoring or trivializing conditions like lupus and MS, since the men with the stethoscopes so rarely experienced them first-hand. Celiac, too, is diagnosed 2 to 3 times more often in women -- despite the fact that it’s thought to occur in men and women equally across the population.

So we’ve got a situation where women are doubly vulnerable -- to autoimmune diseases like celiac, and to nefarious social pressures to control one’s diet. I am deeply disturbed by both of these issues. Now, one could argue that my article gave the former problem short-shrift in its focus on the latter -- that’s a fair criticism which I would grudgingly accept. Still, I think it’s vital that we address both sides of the problem.

The manifest gender politics of celiac does leave me feeling somewhat uncomfortable about the present exchange. Here we are: A couple of guys debating a women’s health issue on a Website run by another guy. What percentage of our readers are men, I wonder?

To make matters worse, Ron insists on presenting himself as “Dr. Ron Hoggan,” as if the wisdom and advice he’s been doling out were the product of a medical degree. In fact, Ron is a self-published book author and a retired schoolteacher, who happens to have a Ph.D. in education. I have tremendous respect for educators, but the fact that he’s using an irrelevant doctorate as a signifier of some higher authority seems especially creepy in this context. It’s as if the women who suffer from celiac disease should be impressed by a gentleman in a white coat.

(The mere fact that Ron distributes medical information in such a way strikes me as unethical at the very least -- and possibly illegal.)

But enough of that: Let’s move on to the Doctor’s more specific points. He objects to my proposal that beginning a restrictive diet may ameliorate gastrointestinal symptoms. He’s right that gluten-free foods are calorie-dense, so this particular diet isn’t likely to restrict food intake (or produce weight-loss) over the long term. Yet it’s also true that anytime you begin carefully accounting for the foods you eat, you’re likely to eat less. That’s the basis for an entire chapter of Hasselbeck’s book -- which, like it or not, is selling like gluten-free hotcakes. In fact, I first learned of this from Dr. Joseph Murray, though he certainly didn’t originate the idea.

Then Ron takes issue, for reasons I can’t quite understand, with my survey of newspaper mentions of gluten intolerance, lactose intolerance, the Atkins Diet, and the Mediterranean Diet. The broad history of these has little to do with the simple fact that -- from a popular-culture point of view -- they have entered and exited the mainstream like fads. I did acknowledge in my article that the timing of new epidemiological data on celiac disease could help explain the spike of interest in gluten intolerance several years ago. I don’t think it explains all the data.

Ron appears especially inflamed by my assertion that you can’t “prove” a case of gluten intolerance in the lab, which he calls “the lynchpin of [my] entire article.” In this case, his criticism seems to be predicated on the notion that blood tests for anti-gliadin antibodies are proof-positive of gluten-intolerance. Well, if you want to define “gluten intolerance” as testing positive on a given blood test, then yes, of course it can be proven by just such a blood test.

In my article, I was referring not to the presence of antibodies of one sort of another -- which, as Ron admits over and over again, are not specific to any disease -- but rather to the nebulous condition under which people experience the symptoms (classic or atypical) of celiac, without having a strict CD diagnosis. That’s in line with the definition used by the Gluten Intolerance Group of North America, and refers to those patients who feel sick to their stomachs or develop rashes or get depressed or feel sluggish when they eat gluten -- despite the fact that doctors have failed to uncover the tell-tale signs of celiac disease.

Ron wants to emphasize that, superficial symptoms aside, the mere presence of anti-gliadin antibodies has been associated with serious illness. We may one day discover this is true. So far, the data to support this claim are sparse. For example, Ron seemed quite pleased to have discovered the following report published in a moderately-influential gastroenterology journal:

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

“Maybe this will reach you,” he wrote in an email, along with a copy of the article. But when I looked at the attachment, I discovered that the research was merely a “letter to the editors,” giving the preliminary results of a pilot study. It’s not even clear if the journal sends these “letters” out for peer-review.

We might excuse Ron his excessive enthusiasm for such speculative studies. After all, the world can see how invested he is -- both personally and financially -- in the idea that gluten is a menace to public health, and that it affects all of us. (As an online shopping mall for gluten-free products, Celiac.com also stands to reap a profit from promoting Ron’s ideas, and attacking mine.)

Finally, Ron quotes a “private email from another person” at the bottom of his critique, who wonders if I’d been dumped by a gluten-free girlfriend at some time in my life. “I am most inclined to agree with this poster’s suspicions,” wrote Dr. Hoggan.

I would be remiss if I didn’t pass along the following email, which I received from a friend of a friend, who heard the claim in question from a passing hobo:

“After looking at Ron Hoggan’s response, I had the distinct feeling that this man is obsessed with gluten-intolerance for a reason. He says elsewhere that gluten affects classroom performance ... perhaps he just wasn’t a very good schoolteacher? … I don’t have any proof, or course ;)”

I take no position whatsoever on this poster’s suspicions.

Sincerely,

Daniel Engber

 
James
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said this on
20 Aug 2009 11:22:26 PM PST
Give up the hate Danny Boy...not sure why you hate Hasselbeck so...but surely it can't be because she wrote a book that has helped so many people figure out that they have a problem with gluten...can it? Or could it be because she is conservative, beautiful, rich and smart? Anyway, the real reason that your article fails is that 90% of celiacs are still undiagnosed, so we need the gluten-free diet to reach full fad status so that as many people as possible can figure out if they have this dangerous problem. It is the doctors and health care system that have failed many of us who are sensitive to gluten--and that is what your article should have addressed. Choose positive over negative whenever you can Dan...

 
C. Brown
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said this on
22 Aug 2009 11:05:03 AM PST
Thank you Mr. Engber for being the voice of reason. I seriously doubt anyone here will listen to you. They hear and see what they want, and there's nothing you or I or anyone else can do to help them. The name of this site needs to be changed. It's definitely misleading. It implies it's for celiacs, but the majority here are not. The majority rules.

 
Ron Hoggan
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said this on
20 Aug 2009 3:33:20 PM PST
Hi Dan,
Thank you for your comments. I am pleased to see that your position regarding gluten sensitivity has become more moderate. Whatever the cause of this change of heart, I am grateful as the gluten sensitive community needs all the support and encouragement we can find.

You made the following statement: “We know that everyone with diagnosed celiac disease must be on a gluten-free diet, 100-percent of the time. It’s also true that anyone with concrete symptoms that can be reliably traced to gluten would do well to avoid gluten.” This is a huge step forward from your original article. I was pleased and gratified when I read that.

I’m also grateful for your attack on my credentials because it offers me the opportunity to itemize my qualifications to offer information related to nutrition and testing related to food induced illnesses.

Those who read any of my published work will be quite familiar with the fact that my background is in classroom teaching and scientific/nutritional research. While you might assume that the “Dr.” in front of my name reflects that I have an M.D., most folks will recognize that the Ed. D. that follows my name (which appeared in all of my private correspondence with you) is not the same as an M.D. In fact, many members of the gluten sensitive community might be reluctant to trust my suggestions and recommendations if they had come from someone with an M.D., as many of them have been sorely disappointed by members of this group.

My doctorate is, as you pointed out, in Education. My research specialty, at the master, doctoral, and subsequent levels is nutrition, particularly as it relates to learning, behavior, and general wellness, as these are important factors in student performance, both for children and adults. I have spent thousands of hours exploring issues connected to our discussion. In addition to having contributed many years of volunteer service in the celiac and gluten sensitive community, I have published original research and letters in peer reviewed medical and science journals, as well as presenting papers at national and international scientific, medical, and support group conferences. I have also served on the board of directors of three non-profit organizations that were either investigating or advocating dietary interventions in the context of autoimmune, neurological, and dermatological illnesses. I also co-authored Dangerous Grains, a book that is highly regarded in the gluten sensitive community, and was published by Penguin (Avery imprint) one of the largest publishing houses in the world. (Is it a coincidence that you mentioned only that I have self published one book while completely ignoring the other book I wrote?)

As we have been discussing serological testing related to gluten sensitivity, I am well qualified to render opinions and engage in discussions in this area. Are you willing to disclose your qualifications in the realm of gluten sensitivity?

Given my expertise in this area, it is neither unethical nor illegal to take credit for my academic achievements by putting Dr. in front of my name. However, since we are on the topic of ethics, just how ethical is it to publish mocking videos, and misinformation to discredit people who are just trying to improve their health through a gluten-free diet? As I explained previously, your linking your article to a skit where a couple of nutritionists/con artists were charging people for recommending a GF diet for any and all complaints and symptoms is a very discrediting and mocking skit, and it has little genuine basis in reality or Science. It is simply discrediting and demeaning.
Gluten sensitivity/celiac disease are better characterized as the “gluten syndrome” which is not a gender issue. Neither is iweight loss a gender issue.

Finally, you continue to resist the notion that anti-gliadin antibodies signify many cases of gluten sensitivity. Since you insist that they do not signify disease, please inform us exactly what it means when we are mounting an immune reaction against the most common food in our diet? A wide range of ailments are associated with AGA. From Dr. Marios Hadjivassiliou in Sheffield, England, to Dr. Rodney Ford in Christchurch, New Zealand, and many points in between, there are many researchers who are trying valiantly to get this message out to the medical community at large.

You really do owe the gluten sensitive community a sincere apology for the misinformation you are disseminating.

Sincerely,

Dr. Ron Hoggan, Ed.D.




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