Non-Celiac Gluten Sensitivity May Not Exist

http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

by vonmoltke • 12 years ago

15 6 12 years ago

realclearscience.com

dang• 12 years ago

Url changed from http://www.forbes.com/sites/rosspomeroy/2014/05/15/non-celia....

ggchappell• 12 years ago

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

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

balor123• 12 years ago

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).

mark_l_watson• 12 years ago

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?

ChristopherM2• 12 years ago

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.

ChristopherM2• 12 years ago

(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.

Non-Celiac Gluten Sensitivity May Not Exist

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