Clues to Gluten Sensitivity - Wall Street Journal (blog)

[Scott Adams]

Open Original Shared Link Wall Street Journal (blog) All three tested negative for celiac disease, a severe intolerance to gluten, a protein found in wheat and other grains. But after their doctors ruled out other causes, all three adults did their own research and cut gluten—and saw the symptoms ... Open Original Shared Link

Open Original Shared Link

[Takala]

Why We Hate the Wall Street Journal:

This is pretty good article (for them) until it gets to the very last quote, and then it totally blows it. The beginning -

"Patients have been told if it wasn't celiac disease, it wasn't anything. It was all in their heads," says Cynthia Kupper, executive director of the nonprofit Gluten Intolerance Group of North America.

Okay, that's up near the top. Article quotes other well known celiac/gluten intolerant researchers. But then the dreadful finale -

For now, a gluten-free diet is the only treatment recommended for gluten sensitivity, though some may be able to tolerate small amounts, says Ms. Kupper.

No, no, no, NO and no !

"There's a lot more that needs to be done for people with gluten sensitivity," Kupper says..... how about you stop treating this like it's an option to damage yourself if you don't feel the immediate reaction, if you're a spokesperson for a disease advocacy group called the Gluten Intolerant Group of NA ?

I was never told the myriad associated disease conditions I had were a sign of being crazy, merely that the cause of those problems were idiopathic, and trying to assume that it was part of a syndrome caused by something in my environment was wrong. My and many other's ongoing search for validation, was merely part of the larger battle to be taken seriously for observing ourselves and our reactions.

Huge difference.

People who may progress to severe forms of auto immune reactions, don't need to be told that a "little bit" is okay once in a while. We can't all be perfect, but there's no reason to encourage the outside world to keep cross contaminating us - REMEMBER who reads the WSJ.

[psawyer]

Between the material in the article, and the comments above, I detect possibly as many as three conditions being discussed:

Celiac disease. An autoimmune condition requiring a strict gluten-free diet.

Gluten Intolerance (non-celiac). This may or may not be a precursor to celiac disease.

Gluten Sensitivity. This is the new idea here. A person who is sensitive may not be completely intolerant. Perhaps such person could occasionally eat Rice Krispies and not be damaged by the malt flavor? I think the point is open for debate, and Kupper acknowledges that. She does say "some" people and "small amounts."

[Takala]

However, this is the Wall Street Journal, which is going to be read by the general public interested in investment strategy.

Having the general public think that a spokesperson for the "Gluten Intolerance Group of N. A." says that eating small amounts may be okay, is going to not only be extremely confusing, but misleading to people in the food industry who may be manufacturing, assembling, or cooking food for celiacs, if they think the Gluten Intolerants can safely have "small amounts."

We have enough problems here already with grain creeping into every possible manufactured item consumed by mouth, without more of the same ignorance.

She ought to either quit using that name for the group, or change it. All celiacs are gluten intolerant, that is the definition of the disease, a person who is gluten intolerant. Some of us lack the official seal of approval diagnosis because of the medical professions' diagnostic criteria, or rare genetics or unknown triggers, or because we did not have blatant enough gut damage yet, but that does not mean we do not get very sick if we ingest it.

[psawyer]

So, Takala, you are placing yourself in the second of the three groups described. That's fine.

I would ask you to go back and again read the statement from Cynthia Kupper. It says:

For now, a gluten-free diet is the only treatment recommended for gluten sensitivity, though some may be able to tolerate small amounts, says Ms. Kupper.

I have highlighted some key words in her comment on gluten sensitivity (not gluten intolerance).

[Takala]

And highlighted so well no glasses were needed to see it.

No, I am not placing myself in the second group, as you have defined it. That's where the medical profession who writes or gives quotes to the media is currently trying to place me, because they don't have anything else and they need a category.

I was diagnosed with auto immune disease by a physician, decades before I interpreted the sum of my medical tests, symptoms, and trial diet testing, as indicating an intolerance to consuming wheat, rye, and barley. It was, yes, there definitely is something wrong with you, but it has no known cause, and we're going to call it idiopathic because it's arthritis like osteoarthritis, or plus MS or lupus, and you have blood protein in your urine, but you just don't have the correct blood tests otherwise, sorry. I have been told my entire adult life to make sure to get enough calcium, vitamin D, etc, the second somebody sees an x ray.

I am still stuck with the arthritis but the flares have decreased dramatically, and can be mostly correlated with either an accidental gluten cross contamination, over exertion exercise aka the Monday morning weekend warrior over- did- it syndrome, because my tendons are always messed up and I will pay for any fun , or cold and lousy weather and low pressure systems.

I haven't done the genetics test because this country (USA) persists in not insisting on universal medical care coverage for its citizens and inhabitants. Plus I don't need it to prompt myself to stick to a diet, obviously! If I had done this, (maybe I will someday) and it turned out I did not had the regular common genes associated with a celiac diagnosis, I would exclude myself from the celiac group, or at least not mind being tossed in with the "gluten intolerants" by the medical researchers, whom need to place us in some sort of slot for storage and study.

Where I am having a slight problem here, is with Spokesperson For the Gluten Intolerant Group saying things that would lead people who were casual readers to not be able to make the distinction between gluten intolerance and this "gluten sensitivity," and could be seen as making the current category called "gluten intolerance people", who really do get auto immune illness(es) from eating gluten, out as not getting seriously sick from eating gluten.

Just for more confusion, go ahead and google "gluten sensitivity." The first thing that pops up is the wiki on it.

Gluten sensitivity

From Wikipedia, the free encyclopedia

Gluten sensitivity (GS) encompasses a collection of medical conditions in which gluten has an adverse effect. For individuals with gluten-sensitive enteropathy, removal of gluten generally results in the restoration of villus architecture[1] or lower lymphocyte densities in the intestine.[2] With some sensitivities, improvements may be seen in the neurological state, but a clinical finding may not be clear.[3][4] GS also can affect blood chemistry,[5] treatability of certain autoimmune diseases,[6] and/or an untreated improvement in autoimmune conditions.[7][8][9]

Gluten is composed of the sticky storage proteins found in wheat. Gluten-sensitive enteropathy (GSE) can range from mild inflammation of the mucosa of the small intestine to severe coeliac disease. The term gluten-sensitive is applicable when a probable diagnosis of GSE is made based on conditions such as dermatitis herpetiformis. However, GS may be used in ambiguous situations when other conditions may be possible.

If this condition or reaction to gluten, was going to cause parts of my body to become so numb that needles literally could be stuck into my flesh that could not be felt, ataxia, screwy vision, and it was going to make little holes in my brain, (all conditions that were medically seen but not diagnosed as having a real cause by Neuro from ****) is only going to be called "Gluten Intolerant," then if we, or rather, "they," feel like they need now yet a "3rd category" of people who can eat it sometimes, or just in small amounts, I am saying leave me out of that classification.

Because it isn't like getting a tummyache or indigestion.

Heck, we have new, real life celiacs here, on site, official Medical Diagnosis Seal of Approval™ certified diagnosis, and the some of them don't even get tummyaches from gluten, and are having a hard time coping with their diagnosis, at first.