Photo from the 2014 Ice Age Trail 50 Miler by Ali Engin. Permission to use header photo must be obtained through Ali Elgin.

"It's better to feel pain than nothing at all. The opposite of love's indifference." - The Lumineers

Thursday, 11 October 2012

Gluten intolerance is actually not a fad

Amitting I am wrong and doing nothing are two things I should practice more often.

Gluten intolerance. I was wrong about it. I thought it was a feel-good, fad diagnosis. I thought there were kids who had true wheat allergy  (celiac sprue) and really didn't grow if they ate wheat. I was thrown by the fact that so many of the blogs I link to are written by women who are gluten intolerant. The non-randomness of this made me think it was a condition that was being overdiagnosed, just so physicians could tell their patients something.

But it is a very real and serious condition that plagues at least 1% of the population (2-3x more common in women) and most people who have it don't know it. It's serious because it doesn't just cause stomach problems and loss of energy, but there is a two-three fold increase in mortality when untreated, due to, among other things, a high risk of lymphoma! It can also be a trigger or seizures. This is all news to me. I read it in a Lancet seminar by Antonio di Sabatino from 2007. Great review. I can send the full text to those who are interested.

This topic became truly interesting to me as I attempted to go gluten free. This happened shortly before we moved back to Denmark. I have experienced an incredible increase in energy and decrease in stomach problems (accidents on tracks aside!). Plus a terrible rash around my eyes (that I had for nearly two years) has disappeared! I hadn't been entirely gluten free, so I doubted diet was the explanation. But apparently you don't have to be totally gluten free to reap the benefits. 10mg a day of gluten is okay, whereas 50mg is not (in terms of causing intestinal damage).

When I was in medical school, I was hospitalized with a life-threatning infection with clostridium dificile (spore-forming bacteria are best when avoided!). During this hospitalization, it was revealed that I had severe iron deficiency anemia and osteopenia (even a little osteoporosis). This coupled with a lifetime of irritable bowel and acid reflux brought up the diagnosis of celiac sprue (gluten intolerance). They asked if they could test me for it and I refused, saying I was not short so of course I didn't have it. Oh, how silly I was! When I think about it, I am a lot shorter than my mom and that probably is a little weird.

I have a doctor's appointment on the 16th, at which point I'll ask for the gluten antibody lab tests, but by that time, I will have been gluten free for so long that the antibodies probably won't be positive. But it's not important because I am not taking the chance of going back to my old diet. I wonder if my entire family will embrace my expensive, time-consuming diet?

Now maybe we also have an explanation for my improved running times?

Ok, as if we needed a reason to eat more chocolate. But now it also causes nobel prizes! Remember, Swedish chocolate is the most potent. (This is from this week's New England Journal of Medicine)

35 comments:

Ingunn said...

Hah - I was just about to "own up to" going gluten free on my blog. I've been hesitant to say anything about it since I know two people with serious celiac disease (to the point where they've been hospitalized [one very short and one very tall, by the way]) and I feel like I'm belittling their condition by claiming gluten intolerance...but the difference in energy, headaches, depression, and brain fog is enough to convince me to not go back to eating gluten. I'm hoping a beer will fit into those 10 mg though. (It didn't help with my pelvic pain problems, which was why I tried it in the first place. Boo.)

I haven't found it expensive so far, since I only eat one thin slice of GF bread a day. And it's made me rely less on fake meat products (which often contain gluten), so I might actually be saving money by buying legumes instead. My friend in Norway gets a little bit of extra money from the government each month to cover the cost of gluten free staples, so if you get an actual diagnosis, maybe you would qualify for something similar in Denmark?

Julie said...

A lab test showed that I was borderline intolerant last year. I went gluten free just to see how I would feel and within two weeks, my migraines went away. Just totally went away...I have battled them for 27 years! I eat gluten free most of the time, but if a I have a weekend I revert back and pig out on foods with gluten, the migraines come right back. So, it appears that the gluten free life is the life for me..I hate migraines. Another thing I have noticed since eliminating gluten is that I recover from long runs and hard workouts faster. I also have less running injuries, aches and pains. Coincidence? I think not.
Luckily for us there are a lot of gluten free options out there now. I try to stick to fruits and veggies but there are some decent breads out there too, my favorites are Udi's millet and chia bread and Udi's whole grain bread.

Jacqueline said...

My husband was diagnosed with celiac earlier this year. It has been a huge change in our family. I often wonder if our children will end up with it -- they are both very small for their age -- in the 5th percentile. And my son had a milk allergy he outgrew. The GI doctor my husband saw told us celiac can present as a milk allergy in kids, which I thought was pretty interesting.

We've gone gluten-free for many things (though sometimes I just cook two separate meals). I admit to feeling better myself eating less wheat stuff. But that could also be because I'm not baking cookies and chowing pasta all the time, not the wheat itself, you know?

I just wish GF pastas weren't so expensive. Good lord.

Danni said...

I don't see how gluten free is time-consuming and expensive?

One problem you will likely have for a long long time is the fact that it's hard to take eating disordered peoples' proclamations of food allergies etc. too seriously. I'm not saying you're not gluten sensitive, I just think limiting the foods you "can" eat is a scary thing to see in someone who is already in disorderland. That said, I don't think eliminating gluten or cutting it way back is difficult or bad unless it means you'll use it as an excuse to eat nothing but gum and tiny portions of tuna.

Stationary Runner said...

I've never been officially tested, either. I ditched wheat per the recommendation of a friend who works in holistic medicine, and the effect was surprisingly rapid. I used to have headaches nearly every day, and every 2-3 months I'd come down with a nasty sinus infection. I have always had stomach issues, too, though I still deal with some of those even now.

A lot of people have asked why I won't take the official diagnostic test, but at this point it doesn't seem worth it to me to eat gluten-based foods. I feel better without them and that's enough of a test for me!

Luckily, there are lots of GF options out there.

mmmonyka said...

I still think that it is a fashion trend and 99% people who go gluten-free feel better because of placebo effect.
But what do I know really?

Chelsea Richards said...

Just as what I expected… Interesting but not that surprising but it was a very well said article indeed and thanks for sharing…
HeavensGateways.com

SteveQ said...

I know roughly 2000 people who claim to be gluten intolerant and 2 who actually are - both short and quite skinny, as their bodies didn't absorb nutrients. What you're talking about is gluten SENSITIVITY, which is common, but still less common than claimed and which has far less effect than everyone claims. It's like the difference between a peanut allergy and a peanut sensitivity or any other of a myriad of sensitivities.

sea legs girl said...

No, Steve. I am talking about gluten intolerance (celiac disease) which can present in MANY ways at many different ages. It is the disease where you form antibodies against gluten. What is gluten sensitivity?

sea legs girl said...

Steve, I just looked on wiki, to see what gluten sensitivity was and it is the SAME as gluten intolerance, I guess. Either you make antibodies against gluten or you don't. It is not at all like peanut allergy and peanut sensitivity. Er .. what IS peanut sensitivity?

sea legs girl said...

To all of the Americans who live in complete, gluten free-dom, I challenge you to move to Denmark and call going gluten free easy!!! I have looked for two months and have found one product that is called "glutenfri" and that is a muesli. There is no gluten free bread, pasta, muffin, wrap, you name it! Nothing! Well, one cereal. So one has to be very creative!

sea legs girl said...

Danni, I hear you, but for what it is worth I haven't eaten gum since June! I really want to be a good role model at least for my kids in terms of diet and I think I am getting there.

sea legs girl said...
This comment has been removed by the author.
sea legs girl said...

Just to sum up. If you have gluten intolerance/celiac disease/gluten sensitivity and are making antibodies against gluten and therby also attacking your own body, you are putting your health (and longevity) at risk. Some people have major symptoms and some have almost none. There is talk in some scientific articles about making gluten intolerance screening recommended for everyone (like a pap smear) because it is a cheap test, the prevalence of the problem is high, and the consequences of not knowing you have it can be dire.

Jill Homer said...

I have an endurance cyclist friend who recently latched onto a self-created sort of gluten free/paleo diet. His main stipulation is less than 100 grams of carbohydrates per day, and only from vegetables and fruit. He said he wants to teach his body to burn fat during exercise. When I criticized his cutting of a macronutrient out of his diet, he sent me all these studies supporting his theories, of course. Eh. He recently spent a few days with me and mainly ate butter, collard greens, bacon, sausage, and coffee with melted butter in it. But he did get through a couple of four-hour bike rides on that.

I guess my point is ... some people have legitimate health concerns and some people just want to justify eating a half pound of bacon for dinner. :P

Alicia said...

I don't understand why finding out that celiac disease affects 1% of the population makes you think gluten-free isn't a fad diet--don't you think more than 1% of the blogs you read involve people eating gluten-free diets? and that more than 1% of the population is on board with the whole gluten-free thing? I mean, think about the explosion of gluten-free products in American supermarkets (which I totally understand must be amazingly beneficial for people who actually are gluten intolerant)...those products aren't going to be profitable if only 1% is buying them.

SteveQ said...

Aarrgh. It's almost enough to make me start blogging again. It's a matter of degree. Perhaps it's best to look at it like lactose intolerance - some people cannot have any at all; some can handle a little but get symptoms with more. People with true celiac disease (gluten intolerance) can have no gluten without dire consequences. People with a sensitivity to gluten cannot handle large amounts of it and show mild symptoms after ingesting small amounts. I'm just sick of people who say "I ate a bowl of pasta and got bloated, then didn't eat it the next day and felt better, so I have gluten intolerance."

sea legs girl said...

Love this discussion!

Ok - gluten free and carb free diets (nice example, Jill) are fads, that is true. Gluten intolerance is not a fad, but an illness that is all too often overlooked and never diagnosed.

Whether or not I actually have gluten intolerance, I am not 100% sure.

sea legs girl said...

Steve, even people with very minor symptoms who have gluten intolerance have to be on a very strict diet to avoid serious health consequences down the road. And those with very severe symptomatology can eat 10mg of gluten a day safely.

Please read the Di Sabatino article or a well-researched scientific review of the subject before you make sweeping generalizations! (I used to have the same opinion you have)

Ingunn said...

It's always interesting to me how worked up people get when discussing food/diet. It's like religion or politics.

SteveQ said...

You mean this Di Sabatino paper that says exactly what I said?
http://www.ncbi.nlm.nih.gov/pubmed/22351716

sea legs girl said...

Wow, Steve! Thank you. I knew something good would come out of writing this. I had no idea there was another (new) entity called non-celiac wheat sensitivity. It has apparently very similar symptoms to celiac disease/gluten intolerance, just a different mechanism. Also possibly explains why much more than 1% of the population has problems with wheat. Read more here if interested:

http://www.ncbi.nlm.nih.gov.ep.fjernadgang.kb.dk/pubmed/22825366

sea legs girl said...

It'll be intersting to see if the new entity has the same long-terms health problems that celiac disease does. Fascinating topic!!

sea legs girl said...

Ingunn - yeah and in my opinion food is way more intersting than (American) politics and way less offensive than religious discussions. Do you find Norwegians debate food as much as Americans do? I didn't think Danes did, but it may just have previously been under my radar.

Anonymous said...

"the difference in energy, headaches, depression, and brain fog..." It is like you were talking about me Ingunn!! Since deciding to severely limit the amount of wheat & gluten I eat my depression, my migraines, the brain fog, the bloating, tummy pain and gas has gone and only returns when I over indulge in products that have wheat & gluten in them.

I tend not to eat GF bread because I don't like the texture. I eat other grains and I like gf oats in my porridge. I don't think you could pay me to go back to eating products with gluten/wheat in them again.

Stationary Runner said...

Sea Legs Girl, I didn't know it was so difficult to find GF stuff where you live. Do they sell various GF flours? Garbanzo bean flour, potato starch, tapioca flour, that sort of thing? You can work wonders with those, especially the tapioca flour.

We eat a lot of rice. It is cheap, it is relatively healthy, and it's good running fuel. We also eat a lot of fruits and veggies, potatoes and quinoa. I feel pretty comfortable now with the GF lifestyle, but it definitely took a while to find a groove, and like you said - creativity is key!

One thing I love about GF eating is that it does force a person to depend more on whole foods, and to really think about what is in those foods.

Diet is such a personal thing. If eating a certain way makes a person feel better, then great. Whether it's because they have a true medical problem (like Celiac) or because they fell into it via a current trend, who cares? It's amazing how many people have taken my diet so personally, as if it is an affront to them that I do not eat wheat. Weird.

sea legs girl said...

Thank you so much for your ideas, Stationary Runner! It is hard to say this right (without offending anyone!), but Danish grocery stores are not that far off from what I imagined Communist Russian grocery stores were like in the eighties. You buy what they have and don't come expecting anything in particular or any selection. The stores are getting better (there are three brands of ketchup now, for example), but there is no quinoa, there is only wheat flour and no other types of flour. There IS rice and corn and potatoes. There is also very high quality produce, fish and eggs, all from free-range, grass fed animals. They are also finally starting to sell tofu some places.

I agree with you 100% that people should eat the diet that works best for them, especially if they get sick from something. Not everything that is an illness has a name yet! :)

Jacqueline said...

Eating GF is way more expensive, in some ways, than non-GF eating. The pasta itself is like 3-4x as expensive. That's why I often cook GF pasta for my husband and regular for the kids.

But to address the sensitivities, our GI doctor told my husband even a quarter teaspoon of gluten will make him ill once he's been completely off it. You get more and more sensitive thelonger you are off it, they said. And he's been off it for about six months, and has noticed that.

But once we figured out what brands to buy -- it's in everything from ketchup to soy sauce to barbecue sauce, etc. -- it got a lot easier to meal plan. But it still completely alters how you cook.

There are only a few cereals he can eat, and he can't eat even GF oats, so that is even more limiting. It's easy to revert to a meat and potatoes/rice diet, which isn't exactly great, either. It's just boring.

But it IS wonderful to see so many GF items at restaurants (though they aren't all as pure as they say they are) and in grocery stores. I about cried this weekend when I found a GF cream of chicken soup. Not that I make a lot of casseroles, but man, nice to have ONE more possibility, you know?

Though I will say GF bread is nasty -- we tried everything, and I even made my own for about a month, but it was gross. And my husband claims GF wraps taste like "cadaver skin," so he eats naked burritos.

sea legs girl said...

Cadaver skin! Ha ha. That is the best laugh I have had all day! Not sure what it sayw about me, but I LOVE gluten free wraps. I wish I could buy them here.

That is really interesting about the sensitivity. I do know doctors are supposed to say absolutely no gluten. But I didn't know an increased sensitivity developed over time. I wonder if that is true for everyone. Thanks for the info.

Jacqueline said...

The best is after they did the test in the hospital, he had to eat something before he could go home. They only had muffins and toast to offer. I was so mad -- it's a GI floor -- you'd think they would have one GF item to offer, since I'm sure they test for celiac a lot there.

Ingunn said...

I don't think food causes heated debates in Norway (unless people are talking about cost!) because most people eat the same, normal diet.

Jacqueline: "cadaver skin" is enough of a visual for me to stay away from gluten free wraps for the rest of my life! Oh, and I am spoiled when it comes to bread since we have a vegan, gluten-free bakery right here in town. :D

Robyn said...

We started a GF diet at our house about six months ago, initially for our 5 year old son. He had recently been diagnosed with an autism spectrum disorder, and gluten-free, casein-free diet has been suggested to help those kids regulate their behavior.

Well, we're pretty sure he's not actually ASD (way too social), but he could use some help regulating his emotions and damping down his sensory sensitivities. He was already eating nearly gluten free (no pasta, no bread, etc.), so it was no big deal. We dropped the pizza and occasional baked treats, and darned if he didn't improve dramatically within about two weeks!

We're pretty sure it's not placebo (we didn't initially tell him what we were doing), and it's not just eliminating sugar -- you can feed him homemade or natural candy or sorbet and he's a little hyper but fine... but give him a cookie or crackers and he's oppositional, cranky, and more sensitive to noise and light. Go figure. And it's not celiac disease -- at least, he's big for his age and has never had GI problems.

Okay, here's the really interesting part: The 3 year old also does better without gluten, though the difference is less pronounced. And my husband now gets cranky and has weird food cravings when HE has gluten! After experimenting extensively, I don't seem to have any effects from it. (Though eliminating dairy has done bad things for how my gut handles cheese... but that's another story).

We eat mostly paleo -- meat, fish, eggs, veggies, fruit, and just a few grains and legumes a week (rice, oatmeal, corn chips, polenta, black beans). No GF bread or pasta. A little more expensive but we all feel terrific.

I'm a doctor myself and was VERY skeptical of the "gluten free" movement, so this is all a surprise to me, but there it is.

Robyn said...

Cooking GF really isn't that hard once you stop trying to "substitute" for gluten containing ingredients like pasta, flour and bread. We do loads of omelets, giant salads with avocadoes, tomatoes, meat, black beans, etc., we do beans and rice, or stews, soups, meatballs over steamed cauliflower, roasted fish with sauteed vegetables...

One good cookbook for athletes interested in GF is "The Feed Zone". Also look at ethnic cookbooks -- Chinese, Japanese, and Indian cuisines are mostly GF by default and much of Mexican and Middle Eastern cooking can be made GF too.

kathleen said...

Have you looked into www.vitacost.com they ship internationally. No clue aboit taxes/tariffs for your country.

sea legs girl said...

Thanks both Kathleen and Robyn. Just wanted to let you know that I very much appreciate the information and recommendations.