Going Gluten-FreeNovember 5, 2014

My Response to The New Yorker

No such thing as gluten sensitivity? Really?!

Comments (9)

Posted by Kirstin Boncher

Excruciating stomachaches, painful mouth sores, low muscle tone, depression and fatigue has plagued my family for years—but it wasn't until my son's weight dropped from 95th to 5th percentile that I put him on a gluten free, dairy free diet. Although all the symptoms pointed to celiac disease, medical tests revealed no official diagnosis. Only one thing was clear: He got better on a gluten free, dairy free diet—and so did the rest of my family. 

We’ve now been gluten-free for seven years, which is why friends sent me the link to Michael Specter’s article in The New Yorker last week. Titled "Against the Grain," they wanted my opinion. The article attempts to provide an overview of the popularity of the gluten free diet and to answer the question--"Should you go gluten free?”(1.)

Although Mr. Specter’s article covers a lot of territory, the tone of the article is quite offensive to those on a medically prescribed diet for celiac as well as for people who are gluten-free because of non-celiac gluten intolerance. The author, like many people who are not affected by gluten, is clearly trying to establish that the gluten free diet is just another fad diet like the fat free diet or the grapefruit diet.

The most upsetting part of the article is the inclusion of Dr. Greene's statement “First, they come off gluten. Then corn. Then soy. Then tomatoes. Then milk. After a while, they don’t have anything left to eat—and they proselytize about it. Worse is what parents are doing to their children. It’s cruel and unusual treatment to put a child on a gluten-free diet without its being indicated medically. Parental perception of a child’s feeling better on a gluten-free diet is even weaker than self-perception.” (2)

As much as our restricted diet is a daily struggle for our family, let me tell you what is actually even harder than not being able to eat food that contains gluten and dairy--HAVING A SICK CHILD!!! Not a "runny nose--I have a cold" sick child, but a sick child who is profoundly unwell whose parents and doctors are watching get sicker and sicker and are unable to help. 

Dietary intervention for chronic health problems is a very real treatment that can allow people to lead healthier lives. Unfortunately, in our society, for a number of reasons, the idea that “everyone can eat everything” is not true anymore.

As pointed out in the article, the environment and the shifting the microbiome might be factors.  Our unchallenged immune system, pesticides like glycophosphate and GMOs are also possible causes for this shift in food tolerance by individuals.

Of course, not everyone is affected by these changes and not everyone has allergies and intolerances—and for people who are not affected, like Michael Specter, the idea of a gluten free diet seems “silly.”  (And, yes, for Mr. Specter  it might be!)  But the explosion of life threatening peanut allergies and the rise in celiac disease are both real and while there is no science on how many are affected by non-celiac gluten intolerance—it also seems to be rising.

There are a number of published research articles available through pubmed on the connection between diet and devastating diseases like schizophrenia, arthritis and autism. These are not  reports of "parent's perception"--they are research reports in medical journals by doctors who are witnesses to the changes and looking at data. Of course, more studies are needed to understand the connections between these devastating disorders and gluten--and who might benefit from a gluten free diet. 

Some individuals can not wait more science to be done. They, or their children are sick and they are forced to find their own answers. In many, many cases after consulting with many doctors and pursuing mainstream medical treatments, they find success with dietary intervention. We should be listening to the people who have these successes--not dismissing them. 

In some cases, as with The New York Times article about "The Boy with a Thorn in his Joints." the gluten free diet is miraculous despite negative testing for celiac--and one day, I hope, the science will help us understand why. (4) 

(1) Specter, Michael. "Against the Grain." The New Yorker. November 3, 2014. http://www.newyorker.com/magazine/2014/11/03/grain

(2) Specter, Michael. "Against the Grain." The New Yorker. November 3, 2014. http://www.newyorker.com/magazine/2014/11/03/grain

(4) Meadows, Susannah. "The Boy With a Thorn in His Joints." The New York Times. February 1, 2013. http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=all


Comments (9)

I was diagnosed with a wheat and barley "allergy" when I was 29. Back then it wasn't known as Celiac Disease. No more bread for me . Or Pizza, pasta or sandwiches. Back then there were no substitutes, you just couldn't eat a lot of things. I couldn't attend potlucks because I didn't know what had flour in it. Even being careful, there was a ton of unlabeled products. The pain, the bloating, the excusing yourself from the room was embarrassing. For many of us, it's not a fad. It's life. I don't have a choice. And because of the unlabeled products, I have sores in my mouth, Type 1 diabetes, rheumatoid arthritis, etc. Don't tell me it doesn't exist!

Posted by: cranberrymary | November 11, 2014 3:37 PM    Report this comment

I just read the New Yorker piece today. I am the mother of a child who has had celiac disease diagnosed since age 3 and my husband also has celiac disease. I wasn't offended, per se, and I appreciate the science of bread content. But, the irony of all of this is, at least my daughter, and my guess is most children with celiac, would like nothing more than to eat gluten. The abundance of gf foods in the market now is nice, but what they really want is a cure for celiac disease and then, to be able to eat gluten. This then made me think of an awful potential conflict of interest. With the major national gf food companies donating samples to the major celiac centers, while the major celiac centers focus on finding a cure (U of Chicago celiac disease center), isn't it against the economic interest of a contributor to the center to have them find the cure. This is troubling to me because, at least for my daughter, she really wants a cure.

Posted by: E. Carroll | November 10, 2014 2:07 PM    Report this comment

I have not read this article, but from what everyone is saying, it is offensive to everyone who suffers from Celiac and IBS and gluten sensitivity. I am 65 years old and have suffered for years and dealt with doctors who put any name on my symptoms but gluten intolerance. I had the joint pains and IBS for 35 years have been seeing doctors all that time and I finally got the answers when I went off the gluten. I was told I had fibromyalgia, even went through a partial knee replacement and wonder if I had known about the gluten thing if I would have needed that. It seems most doctors see no profit by telling you, you might be gluten intolerant or have celiac, since there is no known cure or pill for the problem. They were shoving pills at me and no relief. I found a doctor that cared enough to test me for celiac and didn't seem to care about making the almighty dollar. Why is it that they don't test you sooner for this problem? I would like to see Mr. Specter have this problem for one week and see if he doesn't change his tune.

Posted by: Sara4350 | November 10, 2014 1:14 PM    Report this comment

As a subscriber to the New Yorker magazine and someone who has Celiac Disease, I, too, was offended by Michael Specter's article and his irresponsible last comment--going gluten free is silly. I sent a letter expressing my reaction to the article to the magazine's editor, but have not received a response. I did learn a lot about the production of wheat and baking bread, but the magazine did a disservice to those who have no choice other than gluten free, insinuating that it is nothing but a fad. Shame on the editor, David Remnick, for failing to properly vet Michael Specter's article.

Posted by: rtb1630 | November 9, 2014 6:26 PM    Report this comment

Thank you for being a parent / person that speaks out for this much needed issue! Our family thanks you! I did not read Mr. Specter'd article, but I am very offended by what you have reported!

Posted by: MamaKglutenfree | November 7, 2014 1:19 PM    Report this comment

Thank you for responding to the article. I have been sick for years and on my own figured out that Gluten and Dairy were the cause. If I somehow eat food that has either gluten or dairy in it, I become ill and pay for it with my health. I am mad the the medical profession does not look to food as a possible reason when we are sick. Give people a pill to mask the symptoms, not look at the cause and work to prevent the illness. I was sad to see Mr Specter's article as many people read those things and then accuse those of us that refuse to eat these foods as misinformed or following a fad. I have been to events where there was no food I could safely eat but still would not eat as I know how I will feel in a few hours, not worth it.

Posted by: Gailmiller | November 6, 2014 6:19 PM    Report this comment

I didn't read Mr.Specters comments but all I have to say is "may the Gods put a hex on him for about 6 months dealing with a gluten-free diet...................eating out is so fun and dangerous too.I'll bet he's fat and eats what ever he wants !

Posted by: Jan Lovern | November 6, 2014 4:33 PM    Report this comment

I have the celiac gene but because long ago I went grain-free, my results are negative. Who knows they may have been negative without going gluten free, I don't know. My only diagnosis is SIBO but I have many of the same illnesses as those who have Celiac. Now I'm post menopausal the doctors blame everything on that , which sickens me.

My 18 year old daughter just learned her thyroid is sick, after years of being constipated and she only weighs 110 lbs.

But you have to help yourself any way you can. I lost my career and am living in poverty because I got sick and couldn't get disability without an official diagnosis.

Posted by: hayley3 | November 6, 2014 11:31 AM    Report this comment

I too was offended by Mr. Specter's article. But for those of us who are well for the first time in our lives does it really matter?

Posted by: noramartin | November 6, 2014 9:19 AM    Report this comment

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