
Non-Celiac Gluten Sensitivity May Not Exist - vonmoltke
http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html
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dang
Url changed from [http://www.forbes.com/sites/rosspomeroy/2014/05/15/non-
celia...](http://www.forbes.com/sites/rosspomeroy/2014/05/15/non-celiac-
gluten-sensitivity-may-not-exist/).

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ggchappell
This is a nice article about a great study. I'm glad for both.

But I'm concerned about reactions I've seen. I've witnessed multiple
discussions of this article, and "Now those stoopid gluten-free people are
getting their comeuppance" is a common thought.

That isn't what the article is about. First of all, the study addresses gluten
specifically, not wheat more generally. Second, there are speculations about
the irritant effects of FODMAP carbohydrates[1] and the nocebo effect[2].

Actually, I find the mention of the latter to be a bit odd. Some doctors
recommend rotation diets to patients with food intolerances, on the theory
that some people can rapidly develop an intolerance to food eaten multiple
times in a multi-day period. I do not know how rigorous the basis for this
idea is. But perhaps it ought at least to be considered, if an experiment
suggests that a diet causes no problems initially, and significant symptoms of
intolerance later.

[1]
[https://en.wikipedia.org/wiki/FODMAP](https://en.wikipedia.org/wiki/FODMAP)

[2]
[https://en.wikipedia.org/wiki/Nocebo](https://en.wikipedia.org/wiki/Nocebo)

~~~
balor123
True that. I predict lots of misleading headlines from this. Though
unsupported elsewhere in the article, a quote at the end indicates that NCGS
is still a recognized disorder just of lower incidence than previously
thought. More importantly, it acknowledges that non-intestinal symptoms still
exist (type 1 diabetes, Hashimoto's, neuropathy, etc).

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ChristopherM
(Part 2)

What I have is not "gluten intolerance" or "gluten sensitivity", it's a GLUTEN
ALLERGY and a quite debilitating one at that. I find it absurd how casually
people act about it, like it's NO BIG DEAL. Restaurant personal who can care
less, some I believe even taint the food because they think it's funny and
that people are faking it. I avoid going out at all costs, unless there's a
good sushi or thai place nearby. I always make sure they don't add soy sauce
and don't even mention gluten. I'm tired of the eye rolls, I'm tired of
explaining it, I'm tired of not being taken seriously. This isn't the minor
inconvenience of lactose intolerance, I can't just pop a benadryl and muscle
my through this. I get food that's contaminated and there goes a good 2-3
weeks of my life. I never find out until about 1 - 2 hours after eating the
contaminated food. I suspect it is once it hits my intestines.

I through stupid luck and 35 years of suffering figured out what was making me
sick, had I never gotten worse I never would have even known there was a
problem. I would never have known how much better it is to feel "normal". I
never knew what normal was. My normal was miserable.

I forgot to mention, my pollen allergies are incredibly mild now. No itchy
eyes, runny nose. Just need to blow my nose a couple times a day when the
season comes around.

This was much longer than what I intended, I think I wrote this because it
would be nice if it helped someone else who went through what I went through.
Most doctors will not help you, period. They just want to give you some pills
and get you out the door. They don't want to fix the root cause just treat
symptoms. 99% of doctors know NOTHING about nutrition and food allergies. If
you don't swell up like a peanut allergy it must not be real as far as they
are concerned.

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mark_l_watson
The question might be: do low gluten diets do any harm?

Since the beginning of the year, I have cut my gluten consumption by over 90%,
and I have been feeling great. For at least fifteen years, I have been keeping
track of how I feel the day after eating different foods. I was going to
reduce gluten for about a month as an experiment but I just felt good and kept
my modified diet.

Another benefit: my wife and I are great cooks, and making gluten free food
that tastes great was a fun little challenge, until we acquired new skills.

So, any evidence that going gluten free causes harm?

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ChristopherM
Great... more fuel for the "it's just in your head, you want to feel special,
you want to take part in a fad" fire. (yes, I did read the article at the very
end it admits it may be a real problem, but tries to diminish it as a real
thing)

I could write a book about my own personal experience, how worthless most
doctor's are if you don't have an acute condition they can easily diagnose,
and how society itself had convinced me that I was the problem. I suffered in
silence as I hate doctor's and don't like attention, even when I'm sick I try
to pretend as much as I can that I'm not as I don't want any sympathy.

I have had allergies since I was 6 months old, mostly pollen. I developed
psoriasis at age 9. By the time I was 15 I felt like I was walking around in a
fog all of the time. Because of this I didn't like to interact with people, I
had to work hard to concentrate. Around 17 my sinus's constantly were clogged,
even though I didn't have a runny nose. It was like cement that no nasal spray
or drug could clear. It was like breathing through needle sized holes. I also
would throw up in the shower every morning, as I would feel so nauseous.
Despite this I only went to the doctor a couple of times for the allergy part
and kept the rest to myself.

Even at an early age, I got really sick when I ate rye bread. In college, beer
always made me feel sick. Wine, potato vodka, tequila, cognac... no problem.
For me though, when I am exposed to any gluten containing products I don't get
diarrhea, I would get constipated. The thing is, I never knew any of this was
weird because my entire life 3 meals a day I would eat something containing
gluten. In fact I loved the taste of bread, pizzas, hot dogs, hamburgers,
pasta, pretzels, oatmeal cookies, carrot cake. These were my staples. These
foods are cheap, readily available and quick to make at home.

Fast forward to around the time I turned 30. Quick to anger, quick to fight;
It's a good thing people who crossed me always ran away. I most certainly
would have killed one of them, and being highly intelligent I don't fight fair
back then I would fight to win at all costs, even if it meant injury or worse
to myself. So I'm 30, and out of nowhere I'm hit with panic attacks. It didn't
make sense, I was not stressed, everything in my life was working out great.
The company I worked for had a salary freeze, I told them if I didn't get a
raise I was gone, I wasn't even going to look for a new job first. Boom $10k
more a year, within an hour of telling my boss he told me to give him 3 days
and he came through. So because of the panic attacks I go to the doctor, he
finds out my heart rate is erratic and hovers between 90-110 when I'm
completely relaxed. He tells me I need to relax, calm down, maybe see a
psychiatrist. I try to explain to him that I do feel calm, well I did until I
started to fear having another panic attack. There was nothing stressful at
all going on in my life, I had just gotten a raise, my manager didn't even
manage me, I worked with the other engineers at my company to figure out what
tools they needed. There was no pressure, about the only time I saw my manager
was for the golf league and we never even talked about work. He told me my
adrenaline was cranked up and it never rested. So he gave me ativan, and an
evil drug called paxil. Funny thing about paxil, besides the killing my entire
motivation to do anything and weird brain zaps. It also gives me diarrhea. But
combined with the gluten I end up with normal bowel movements. This I didn't
know at the time.

Not long after, I receive a call about a possible management position.
Management is what I had wanted since the beginning, I can write code but
honestly hate it. Even though I'm really good at it, which is why I got into
it in the first place, that and the money.

So I move to take on the new management position, I'm making a lot more money.
So I take up flying... if any of you have a pilot's license or tried you'll
know that taking paxil is an immediate rejection for an FAA medical. I'm
devastated, flying has been a dream of mine forever. So, I taper off paxil and
quit completely after 3 weeks. I feel depressed, I can't concentrate at work
they hand me a severance package. Going to the doctor's for depression is the
last thing I will do, as they created the problem to begin with. I sit at home
and play Lord of the Rings online for 2 months straight, I had the luck of
getting into the Beta. After those 2 months I'm feeling well enough again to
start looking for a new job.

This time I decide to move to California, go where the money is. I land a job,
within 6 months I'm managing a small group at this company $40k a year raise.
Life is rolling along great. About 1 1/2 years into this job, I start having
the worst constipation of my life. 7 days could go by with nothing, I tried
eating more fiber (whole grain breads and pasta) it seems to get worse. I
noticed when my digestive system seizes up I start to get panic attacks. This
time though I seem to be able to suppress the panic attacks when they start.
But my insides, especially right side feel raw, on fire, incredibly sore to
the touch. I go to a gastroenterologist, upper GI, blood tests, etc etc. Tells
me he doesn't see anything, tells me to eat more fiber, take metamucil, oh ...
and to see a psychiatrist. I may have looked depressed, but I didn't feel
depressed just unbelievably miserable. It's funny (not haha) how incompetent
most doctors really are, to them all patients are stupid, they are liars and
they are just looking for drugs.

I gave up on the doctors, it had already cost me over $2k even though I had
"really good insurance". About 2 1/2 years into this job, even though I had
kept my opinions about how the company was managed to myself I finally had had
it, and wrote how I truly felt, well it was also what many other engineers in
the company felt to in my yearly review. Within hours of upper management
reading it I had a nice severance check and was being escorted out the door.

Now I had money and time on my hands. The constant intestinal troubles led me
to take up smoking again, it had been 10 years since I had quit. Funny thing
about smoking for me, it helped to clear my head (focus) and got my digestion
moving again. Like clockwork, as soon as I had my first cigarette in the
morning I could go to the bathroom.

I spent months learning, Adobe Flash, Adobe Fireworks. I learned parallel
programming on CUDA, even created a working RC5 brute force cracker that would
work in 2 minutes. Played with back-propagation neural networks, tried dozens
of new ideas for compression. I took a trip to Budapest Hungary for 5 weeks,
to learn bespoke shoemaking ( by the way one of the best things I've ever
done, I love working with my hands ). When I get back I decide to work for 1
year, live really cheap and then I will try to create a product. Everything
goes according to plan, I have tenants about to move out from the house I
still have in Colorado. So I move back as it's cheaper than renting an
apartment in the bay, that and no noise from neighbors. A nice quiet, sunny
working environment.

Now that I have time, I start cooking all kinds of things from scratch.
Homemade breads, homemade pizza doughs, cookies, cakes, muffins. I'm starting
to feel really awful again, I never really got better but I had gotten to
something I could tolerate. So I cut back on all the homemade stuff and while
not "better" it gets tolerable again. Then I start cooking again as I love the
homemade stuff, plus I like cooking. I get hit hard again.

It's at this moment that it dawns on me. Maybe it's the wheat? But, I thought
celiacs gives you diarrhea? That's why it never occurred to me. I'm feeling so
bad, I think to myself "Cut out all wheat, while inconvenient I have nothing
to lose".

The first week, no big change. It's like when I just cut back on all the home
cooked breads. Second week, feeling a little better. Third week, I feel
euphoric. I have never had such crystal clear thought in my entire life. I
don't feel anger, I feel extroverted I like talking to new people. My nasal
passages are wide open, if only I could breathe this easy in high school I
would have done sports. With my new concentration, focus, memory recall. The
things I could have done in college if I wasn't handicapped with the gluten
allergy. It still took 6 months for my intestinal pain and soreness to heal.
And something quite fascinating happened. My psoriasis completely disappeared.
When it first appeared I had psoriasis at the exit of my anus, and on my
tongue. Later elbows, knees, ankles, knuckles.

It's been a while now so I try some oatmeal cookies, because I love them so
much. Within about 1 1/2- 2 hours I'm slammed, sinus's clogged up, intestines
in knots, brain fog. I couldn't have a bowel movement for 5 days. It took 2
weeks to start feel o.k again, not great just o.k. I decide to swear of gluten
completely, I don't need a doctor's official diagnosis to know. It wasn't
until I was 35 years old that I realized how normal people feel all the time,
and yet everyone complains they have no idea whatsoever how lucky they are.

I try to avoid eating out, but every once in while I do. I've been gluttened
about 6 times despite being assured what I was eating was gluten free.
Probably eaten about 30 times and was fine.

