5 things you should know about my condition and my activism.


Thing 1. Narcoleptics are not lazy. As soon as you hear the word “narcoleptic,” you should not be able to use the words “lazy,” “lack of motivation,” or “not trying.” You will never know how exhausted we are. The same rule should apply to anyone else with a disease causing extreme tiredness and lethargy (such as Hashimoto’s or CFS). Please, you focus on you, and I will focus on me.

Thing 2. My diseases are not flaws.

I once had a boyfriend who said to me,

“Christina, you’re perfect in every way.. except maybe for your sleeping thing and that rash on your ankle.”

I get along best with myself when I accept my diseases as a part of me.

No, I am not narcolepsy, but if I think of it in a more compassionate way, it helps me accept and love myself. 

I now work with my diseases instead of struggling against them. It makes life much more livable.

Also, I have a new boyfriend who thinks my lichen planus is cute and lovingly calls me “The Sleepy Monster.”

So, embrace your disease as best you can. If it is a part of you, it is not a flaw.

Thing 3. Just because I have found symptom relief by changing my diet doesn’t mean I was misdiagnosed. Too many times, myself and others in the “gluten free narcoleptic” community have had other narcoleptics and doctors say to us, “Well, you must not really have narcolepsy.”  Nothing could be farther from accurate, but still these beliefs exist. It’s like saying to someone with lupus that just because their butterfly rash gets better when they don’t go outside, they must really not have lupus. Or, just because you have symptom relief from Xyrem you are no longer narcoleptic. How screwed up is that logic? Now, whether gluten intolerance covers a larger spectrum than was once appreciated may be up for debate, but you are not allowed to tell me I’m not narcoleptic unless you’re my personal doctor (who so far has not said that, even when she knows I am more awake on a gluten-free diet).  Also, the alien who visited me last night would disagree with your assertion that I was misdiagnosed.

Thing 4. I don’t make money off of gluten free. Sometimes people (especially in the narcoleptic community) are scared to change their diet because they think we have something to sell or are scamming them in someway. It’s true…there are a lot of companies that make money off of diet fads. I am not one of those people.

I am only interested in young people my age finishing school, graduating from college, and having healthy productive lives, and am interested in facilitating personal health journeys in any way I can, whether or not you decide gluten free is right for you. Personally, going gluten free is what helped me wake up and live a productive life. If you do not try gluten free, or if it doesn’t work for you, we can still be friends.

Thing 5. There is more that is not known than is known. As a scientist, I can tell you that if we think we understand something, probably we are really only just beginning to understand it. What is in a great deal of medical literature is outdated, particularly when it comes to autoimmune diseases.  Narcolepsy is not an exception. There are some things we think we might know, but mostly it is unknown. Keep an open mind and try not to let medical dogma get to your head too fast, and be equally skeptical of all information that you receive. If something works or makes you feel better (and is not harming yourself or others) in some way, do it. Worry about how it might work later.

What is Lichen Planus?

3) What is Lichen Planus?

Lichen planus is three things: gross, embarrassing, and extremely itchy. I’ve had the same spot of LP on my ankle for more than 3 years. It changes shapes slowly, but it’s just as gross as it was when I first got it. (See it in all it’s beauty on my right ankle in the picture below).

It isn’t well characterized as to what exactly it is (other than immune cells invading your skin) but it is commonly seen with Hashimoto’s thyroiditis, and there is good evidence that it is an autoimmune disease (your skin cells have the same receptors that are implicated in Hashi’s). A thorough review of the literature will convince people that it is, and it is taught as if it were an autoimmune disease in many classes, although the exact mechanism isn’t well known.

What is Hashimoto’s thyroiditis?

2) What is Hashimoto’s thyroditis?

Hashimoto’s is an autoimmune disease characterized by the destruction of thyroid tissue. What’s cool about it is that it was the first disease to be recognized as an official autoimmune disease. Here’s a quick and dirty on the symptoms:

Myxedematous psychosis, weight gain, depression, mania, sensitivity to heat and cold, paresthesia, fatigue, panic attacks, bradycardia, tachycardia, high cholesterol, reactive hypoglycemia, constipation, migraines, muscle weakness, cramps, memory loss, infertility and hair loss.

 

So, you can easily see why it is often misdiagnosed, and also why it sucks. Couple it with narcolepsy and you’re tired all the damn time. I’ve talked extensively about Hashimoto’s on other posts.

What is Narcolepsy?

1) What is narcolepsy?

Narcolepsy is a horrendously misunderstood neurological (most likely autoimmune) disease.

It is characterized by four things:

              a) excessive daytime sleepiness (EDS)  And no, folks, we’re not talking about the kind that you get when you sit too long at your desk and can remedy with a cup of coffee. We’re talking about the kind of sleepiness that happens after you’ve been asleep for twenty hours and you wake up feeling like you’ve just gone to battle or run a marathon. As if you’ve been awake for 5 days already. The kind that hurts and makes you feel like you’re losing your mind. The kind you can’t help. You can’t help it so much you sleep when you’re not only sitting or laying there, but also when you’re watching TV, driving, trying to have a conversation with someone, or trying to have sex. You just can’t help it. It happens.

b) hypnagogic hallucinations  Sounds scary, right? Right. Hypnagogic hallucinations are the kind of dreams that occur as you are falling asleep (hypnagogic) or waking up (hypnapopmic). They occur during the same times during sleep that lucid dreaming does. They are “dreams” that you’re awake for and can occur for any of your senses. Sometimes they’re nice, sometimes their not. For a lot of people, they can be alien intruders, things or people coming into the room that aren’t really there, loud noises and crashes, or bright lights, intense emotions and feelings, or sexual encounters and feelings that aren’t actually happening. An important feature is they seem to be really happening (in a technical sense, they are really happening – in your head); and this can be really disturbing for some people.

c) sleep paralysis Sleep paralysis is a bitch. Especially if it occurs along with a hypnagogic hallucination. You know, you’re awake but you can’t move anything? These are more common for “normals” to experience – maybe about once a year. But, try having this happen every time you sleep.

Sleep paralysis is one of the most terrifying aspects of narcolepsy, and if your brain is strange enough, will make you feel like you’re losing your mind. Try telling your mom you were abducted by aliens last night and they came from another dimension through the mirror. Then tell her with a serious look on your face. See?

As a side note, sleep paralysis is believed to be linked to SUNDS (Sudden Unexpected Nocturnal Death Syndrome), and there’s a lot of superstition around it in the Philippines.  Many people believe it’s linked to high carbohydrate consumption in the evening. Which is just another reason why you shouldn’t eat bread. heh.

d) cataplexy. When you think of narcolepsy, this is probably what you are thinking of. Usually, it’s not people just falling over asleep like most people believe. Rather it is a spontaneous loss of muscle tone — you can think of it like the opposite of a seizure. Instead of uncontrollably moving (seizure), you are uncontrollably not moving (cataplexy).  The current medical opinion is that as a narcoleptic either you have cataplexy, or you do not have cataplexy; although there is probably some spectrum in between (I for example, do not have overt cataplexy, but I intensely avoid overly emotional situations or I get muscle weakness, but I don’t have total loss of muscle tone).   Anyway, when you laugh hysterically at dogs falling over when they get excited for food? That’s it.

Introductions

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

It would be nice to have a simple “What is ___” statement here. I prefer to usually focus on narcolepsy, because it is the disease that affects my life to the greatest extent. To be fair, I should introduce all of the conditions I have and discuss. After being sleepy my entire life, I was diagnosed with narcolepsy at the age of 21. At 22, I was diagnosed with Hashimoto’s thyroiditis, and at 23 lichen planus.

1) What is narcolepsy?

Narcolepsy is a horrendously misunderstood neurological (most likely autoimmune) disease.

It is characterized by four things:

              a) excessive daytime sleepiness (EDS)  And no, folks, we’re not talking about the kind that you get when you sit too long at your desk and can remedy with a cup of coffee. We’re talking about the kind of sleepiness that happens after you’ve been asleep for twenty hours and you wake up feeling like you’ve just gone to battle or run a marathon. As if you’ve been awake for 5 days already. The kind that hurts and makes you feel like you’re losing your mind. The kind you can’t help. You can’t help it so much you sleep when you’re not only sitting or laying there, but also when you’re watching TV, driving, trying to have a conversation with someone, or trying to have sex. You just can’t help it. It happens.

        b) hypnagogic hallucinations  Sounds scary, right? Right. Hypnagogic hallucinations are the kind of dreams that occur as you are falling asleep (hypnagogic) or waking up (hypnapopmic). They occur during the same times during sleep that lucid dreaming does. They are “dreams” that you’re awake for and can occur for any of your senses. Sometimes they’re nice, sometimes they’re not. For a lot of people, they can be alien intruders, things or people coming into the room that aren’t really there, loud noises and crashes, or bright lights, intense emotions and feelings, or sexual encounters and feelings that aren’t actually happening. An important feature is they seem to be really happening (in a technical sense, they are really happening – in your head); and this can be really disturbing for some people.

    c) sleep paralysis Sleep paralysis is a bitch. Especially if it occurs along with a hypnagogic hallucination. You know, you’re awake but you can’t move anything? These are kind of common for healthy people to experience – maybe about once a year. But, try having this happen every time you sleep.

Sleep paralysis is one of the most terrifying aspects of narcolepsy, and if your brain is strange enough, will make you feel like you’re losing your mind. Try telling your mom you were abducted by aliens last night and they came from another dimension through the mirror. Then tell her with a serious look on your face. See?

As a side note, sleep paralysis is believed to be linked to SUNDS (Sudden Unexpected Nocturnal Death Syndrome), and there’s a lot of superstition around it in the Philippines.  Many people believe it’s linked to high carbohydrate consumption in the evening. Which is just another reason why you shouldn’t eat bread. heh.

      d) cataplexy. When you think of narcolepsy, this is probably what you are thinking of. Usually, it’s not people just falling over asleep like most people believe. Rather it is a spontaneous loss of muscle tone — you can think of it like the opposite of a seizure. Instead of uncontrollably moving (seizure), you are uncontrollably not moving (cataplexy).  The current medical opinion is that as a narcoleptic either you have cataplexy, or you do not have cataplexy; although there is probably some spectrum in between (I for example, do not have overt cataplexy, but intensely avoid overly emotional situations or I get muscle weakness, though I don’t have total loss of muscle tone).   Anyway, when you laugh hysterically at dogs falling over when they get excited for food? That’s it.

2) What is Hashimoto’s thyroditis?

Hashimoto’s is an autoimmune diseases characterized by the destruction of thyroid tissue. What’s cool about it is that it was the first disease to be recognized as an official autoimmune disease. Here’s a quick and dirty on the symptoms:

Myxedematous psychosis, weight gain, depression, mania, sensitivity to heat and cold, paresthesia, fatigue, panic attacks, bradycardia, tachycardia, high cholesterol, reactive hypoglycemia, constipation, migraines, muscle weakness, cramps, memory loss, infertility and hair loss.

So, you can easily see why it is often misdiagnosed or under-diagnosed, and also why it sucks. Couple it with narcolepsy and you’re tired all the damn time. I’ve talked extensively about Hashimoto’s on other posts.

3) What is Lichen Planus?

Lichen planus is three things: gross, embarrassing, and extremely itchy. I’ve had the same spot of LP on my ankle for more than 6 years. It changes shapes slowly, but it’s just as gross as it was when I first got it. (See it in all it’s beauty on my right ankle in the picture below).

It isn’t extremely well characterized as to what exactly it is (other than immune cells invading your skin) but it is commonly seen with Hashimoto’s thyroiditis, and there is good evidence that it is an autoimmune disease (your skin cells have the same receptors that are implicated in Hashi’s). A thorough review of the literature will convince people that it is, and it is taught as if it were an autoimmune disease in many classes, although the exact mechanism isn’t well known.

So, there are my diseases in a nutshell; but, it’s not ME, per se. As for an introduction to myself, you can find a tidbit: here.

5 things you should know about my medical conditions and activism:

Thing 1. Narcoleptics are not lazy. As soon as you hear the word “narcoleptic,” you should not be able to use the words “lazy,” “lack of motivation,” or “not trying.” You will never know how exhausted we are. The same rule should apply to anyone else with a disease causing extreme tiredness and lethargy (such as Hashimoto’s or CFS). Please, you focus on you, and I will focus on me.

Thing 2. My diseases are not flaws.

I once had a boyfriend who said to me,

“Christina, you’re perfect in every way.. except maybe for your sleeping thing and that rash on your ankle.”

I get along best with myself when I accept my diseases as a part of me.

No, I am not narcolepsy, but if I think of it in a more compassionate way, it helps me accept and love myself. 

I now work with my diseases instead of struggling against them. It makes life much more livable.

Also, I have a new boyfriend who thinks my lichen planus is cute and lovingly calls me “The Sleepy Monster.”

So, embrace your disease as best you can. If it is a part of you, it is not a flaw.

Thing 3. Just because I have found symptom relief by changing my diet doesn’t mean I was misdiagnosed. Too many times, myself and others in the “gluten free narcoleptic” community have had other narcoleptics and doctors say to us, “Well, you must not really have narcolepsy.”  Nothing could be farther from accurate, but still these beliefs exist. It’s like saying to someone with lupus that just because their butterfly rash gets better when they don’t go outside, they must really not have lupus. Or, just because you have symptom relief from Xyrem you are no longer narcoleptic. How screwed up is that logic? Now, whether gluten intolerance covers a larger spectrum than was once appreciated may be up for debate, but you are not allowed to tell me I’m not narcoleptic unless you’re my personal doctor (who so far has not said that, even when she knows I am more awake on a gluten-free diet).  Also, the alien who visited me last night would disagree with your assertion that I was misdiagnosed.

Thing 4. I don’t make money off of gluten free. Sometimes people (especially in the narcoleptic community) are scared to change their diet because they think we have something to sell or are scamming them in someway. It’s true…there are a lot of companies that make money off of diet fads. I am not one of those people.

I am only interested in young people my age finishing school, graduating from college, and having healthy productive lives, and am interested in facilitating personal health journeys in any way I can, whether or not you decide gluten free is right for you. Personally, going gluten free is what helped me wake up and live a productive life. If you do not try gluten free, or if it doesn’t work for you, we can still be friends.

Thing 5. There is more that is not known than is known. As a scientist, I can tell you that if we think we understand something, probably we are really only just beginning to understand it. What is in a great deal of medical literature is outdated, particularly when it comes to autoimmune diseases.  Narcolepsy is not an exception. There are some things we think we might know, but mostly it is unknown. Keep an open mind and try not to let medical dogma get to your head to fast, and be equally skeptical of all information that you receive. If something works or makes you feel better (and is not harming yourself or others) in some way, do it. Worry about how it might work later.

Why Write?

Welcome to the first AutoimmunePatient article participating in WEGO Health Activist Writer’s Month Challenge.  The concept is that an amazing group of health writers from around the world receive daily prompts, and will write about them to promote awareness of personal stories and of diseases in general.

 April 1st, 2013: Why do I write?

If you had told me five years ago that today I would be blogging, writing about my disease, and sharing the information I’ve gathered and my personal journey, I’d have broken into hysterical laughter.

From the time I was diagnosed up until mid-2012, my autoimmune diseases (narcolpesy, Hashimoto’s thyroiditis, and lichen planus) and prior history with bipolar disorder, depression and anxiety were things I would have taken to the grave with me. I shared as minimal information as I could, not only including bosses and teachers, but even family and close friends. No one knew the struggles I faced on a day-to-day basis.

In 2012, I went to my first narcolepsy patient conference (Narcolepsy Network).  It was the first time I had ever met any other narcoleptic before. After meeting so many people like me, I knew then that I had to get out there, and share my story of not only disease, but also the recovery I had achieved (in short, I am able to put my narcolepsy into “remission” if I do not eat gluten).  If my story could help connect with, inspire, or change another young adults life, outing myself to the world was worth it.

Two months after starting AutoimmunePatient, I received my first real “anonymous” feedback. J wrote:

 “3 months ago… I was diagnosed with narcolepsy without cataplexy. After a year of increasingly acute fatigue, I got to the point where I could not function anymore…  after 4 days of cutting all gluten out, I immediately started to feel more energetic. 2 weeks after the diet, I feel like a whole new person, ready to continue with my studies and pursue all the goals which I previously wanted to…Why is the link between diet and reducing narcoleptic symptoms not mainstream? “

That was it, another narcoleptic that had undergone the same journey I did, reclaimed functioning by a simple gluten free diet, and not many people were out there talking about it (much less doctors approving or recommending it!)

I knew then that I needed to be talking about it. Even if only from a personal standpoint.

Comments kept coming in; mostly they were narcoleptics, but some from people with Hashimoto’s or another thyroid diseases, some with funny skin diseases like mine, others who found there way there by way of just the “paleo” diet.

Then, I got an e-mail that made me sure I’d keep up my website and keep telling my story forever. A comment came from “C” about her daughter who had been diagnosed with narcolepsy at age 6 (current age 16); after years of struggling with diagnoses and medications, relief from her daughters narcolepsy never came until gluten was removed from her diet. She writes:

Within 6 weeks [of removing gluten from her diet] my daughter was noticeably more alert, her previous ‘drowsy-droopy eyed’ look was completely gone. Within 5 months she back to running around and lost 20 lbs, she was quite ‘herself’ again. She was sleeping soundly and completely through the night. When we returned to her Sleep disorder MD for her 6 month follow-up, she was quite shocked and also very pleased with the obvious change in my daughter. My daughter is now a very active high school sophomore, an excellent student, a cheerleader, a dancer, a pianist, yet most importantly a delightful young lady with a beautiful spirit. She has self-regulated her gluten diet and we have become quite accomplished at mastering gluten free menus! Please keep getting the word out to those struggling with narcolepsy. Removing gluten from her diet completely changed the impact narcolepsy has on my daughter and completely changed the quality of my daughter’s life! Thank you!

And that was all it took. Another young girl whose life had changed, doing what I was doing. I knew then I had to get the word out, that my story was more than just an “n of 1”, and the more that read it, the more might follow (and feel better!)

Since the initial posts and comments, I have been blessed to interact with a group of narcoleptics who also follow a gluten free diet like me, and through our shared experiences, strength, and hope, continue to fight our disease(s) one day at a time.

When I was first diagnosed, I was brutally alone. Now, I don’t have to face it by myself. And, if my blog helps even one person get out of bed and go to school or work in the morning; it’s all worth it.

 

 

Narcolepsy and Nicotine

When I first went to Narcolepsy’ Networks patient conference in 2012, I had never met another narcoleptic.  In fact, I in part went to the conference to meet my good internet friend and kindred spirit Heidi Lindborg over at the Zombie Institute.

Firstly, if you have never done so, I would highly recommend meeting another narcoleptic. And, meeting another narcoleptic at the patient conferences every year gives you an opportunity to meet more than one! For me, finally meeting someone that really & truly understood my sleepiness and had adopted some of the same lifestyle accommodations that I had was beyond an emotional experience. It was like meeting a long-lost sibling.

One of the first things I noticed about narcoleptics is that we tend to try and find stimulation wherever we can get it; and we must undergo these measures to simply function (and especially to get up at 7:30 AM for breakfast and seminars).

Sure, we have our prescription pills, coffees, Five Hour Energies, and carb-loaded sugar-drinks to keep us going, but that just doesn’t always cut it. What does seem to cut it are cigarettes. I have never seen more smokers gathered on one place in my life than at the Narcolepsy Network conference.  There were Camels, e-cigarettes, nicotine patches and nicotine gum (my personal preferred method).

So what gives? Is it just the fact that it’s a stimulant? Or could it be that nicotine is a “special” stimulant for narcoleptics?

After that first patient conference, I started asking opinions and reading up on what nicotine does to wakefulness, and I was totally stunned. What I found was some scientific literature to support nicotine as an acceptable (and anecdotally preferred) stimulant for narcolepsy.

How might nicotine help us narcos?

1. Getting our *ss up in the morning. Did you know that normal people don’t have to force themselves half-awake, drink coffee, take a Ritalin, go back to sleep and then “wake up for real” half an hour later? No, it’s true. Normal people don’t do that.  Sleep inertia is one of the most frustrating parts of narcolepsy for me, and in my opinion greatly contributes to the “lazy” stigma we face.  Not only that, but most people aren’t so angry in the morning either.

Anyway, these two doctors in Tennessee had a 17-year-old male narcoleptic patient that they had some trouble treating.  Like a lot of other narcoleptics, his morning sleep inertia was so bad that he couldn’t wake up to take his stimulants and go back to sleep to wait for them to kick in (on top of that he was “combative” if you did try to wake him. The solution? Nicotine patch!

The genius plan these two doctors came up with was for Mom & Dad to sneak in this kids bedroom, slap a 14mg nicotine patch on his arm, wait 20 minutes & rip it off.

Just for comparison for the non-smokers out there, one cigarette has about 1-3 mg of inhaled nicotine. So this guy got a mega-dose for never having been a smoker.

Note: he is reported to have successfully graduated highschool and not been kicked out for truancy thanks to the patch.

2. Warding off EDS in general.

In another study, researchers surveyed narcoleptics about nicotine use.  In this particular study, apparently all narcoleptics who smoked asserted that smoking reduced EDS, and one woman even claimed that it helped her cataplexy.

I’ve spoken with many narcoleptics who no longer use cigarettes and prefer e-cigarettes (way to go!), and the effect seems largely due to the nicotine as opposed to smoking itself.

3. Less sleep after eating.

Smokers also have impaired glucose and lipid metabolism after eating. Taken one way, this means that smoking is bad for you. Taken another way, it means that smoking may help mitigate some of the postprandial (post-meal time) sleepiness narcoleptics often experience.

4. Attention. Pay attention. FOCUS!

Smoking might also help us pay attention. Nicotine has been demonstrated many times previously to enhance attention and nicotine patches have been used for cognitive deficits in other disorders.

In addition, attention deficits have been demonstrated in narcoleptics and are a common complaint, although everyone used to think it was merely a symptom of the sleepiness.

In a recent paper published in The Journal of Neuroscience, orexin and nicotine were shown to excite the same neurons in the prefrontal cortex. This is important because these projections are necessary for some kinds of attention.

5. Get your [anti] self under control.

Certainly, smoking itself exacerbates inflammation without a doubt, and probably contributes to the progression of some autoimmunities, although may be protective for some others (reviewed here, here, here, and here). Whether the immune suppressive effects of nicotine itself is at play in these cases of supression is not entirely clear.

Smoking has been demonstrated to be associated with decreased IgG levels (mostly IgG2), and nicotine replacement lowers only IgG4. Narcolepsy has also been associated with decreased IgG1-3 levels and increased IgG4 levels. In addition, narcoleptic smokers have even less IgG than normal smokers (although whether they also specifically have lower IgG4 has not been determined).

This is entirely speculative, but if elevated IgG4 is a negative event in narcolepsy, maybe smoking and nicotine replacement therapies effects on IgG4 could bring these levels down to “normal?”

 6. Orexin Activation!

Nicotine administration has also been demonstrated to directly activate orexinergic neurons. So, if you have some orexinergic neurons left they are activated (and presumably increase orexin production)… and, there’s nothing more anti-narcoleptic than upping orexinergic neuron activity!

So, should all narcoleptics be smoking? Absolutely, not. But there is some data to suggest that nicotine could have beneficial effects on performance, attention, and wakefulness in narcolepsy, and could provide some clues as to why so many of us are seen lighting up at the conference.

Gluten-free and thyroid disease

I was first diagnosed with Hashimoto’s thyroiditis after 1 year of a gluten free diet. I was quite surprised by this, as I had assumed that a gluten free diet might lessen the symptoms of other autoimmune diseases I had.

Indeed, it made my narcolepsy nearly disappear. Why, then, did I seemingly have continued destruction of my thyroid despite being on what I once considered  an “autoimmune cure-all diet”?

Hashimoto’s has been shown to occur more frequently in individuals with celiac disease, and the opposite (subclinical celiac disease in patients with HT) has also been demonstrated. Currently, there is no good proposed explanation for the association at this time, although some molecular details linking the two are starting to be explained, as described below.

Unfortunately, while a gluten free diet can reverse the effects of subclinical or overt celiac disease and gluten sensitivities, and potentially provide beneficial effects to other autoimmune diseases, a gluten free diet seems to have no effect on Hashimoto’s thyroiditis, and does not affect progression of the disease, either.

In short, while a gluten-free diet may provide relief from the ill-effects of gluten itself, or provide some relief for individuals with other autoimmune diseases, a gluten-free diet does not seem to deter progression of autoimmune thyroid disease once the process has already begun.

———

Updated September 29, 2012

After several thoughtful comments on this post, I have decided to expand upon some of the concepts originally laid out.  Though familiar with the article, I specifically avoided mentioning “The gluten-thyroid connection” post by Chris Kresser, as well as those by other nutritionists for several reasons detailed below.  However, some really great suggestions were brought up, and it made me really go back and look at the literature again, which I really appreciate!

1. It is clearly demonstrated that celiac disease is associated with several other autoimmune diseases, among them autoimmune thyroid disease, and that undiagnosed celiac disease or gluten sensitivities may have the potential to precipitate other autoimmunities.  I don’t think anyone is saying anything different at this point, so we’ll leave it there.

2. Chris Kresser claims that the immune cells which “see” gluten also make a mistake and “see” thyroid autoantibodies.  This concept is called “molecular mimicry,” and is generally thought of as immune cells being activated by a foreign antigen, see the same antigen in self tissues, and get confused, thereby unintentionally attacking yourself. Molecular mimicry was a pet theory (especially between 1980’s – 1990’s) in the realm of autoimmune research for quite a few years, and still is to a certain degree.

Chris Kresser’s article mentions, but does not cite the reference for his claim that there is molecular mimicry occurring between thyroid tissue and gluten.  

In another post over at “Dr. Karl R.O.S. Johnson’s Chronic Condition Natural Treatment Blog” , Dr. Karl again puts forth the molecular mimicry idea, and even includes a picture as well as a fictitious amino acid sequence (AABCD) supposed to cause the “T cell confusion,” again without reference to any legitimate source.  Enough said.

Leyla Muedin, over at the Dr. Ronald Hoffman Center has a similar article and states:

“In the case of autoimmune thyroiditis, a gluten-free diet can sometimes decrease antithyroid antibodies. It is thought that people with autoimmune disease have a more permeable intestine (leaky gut) and that gluten and/or other undigested substances are leaking into the blood stream and causing autoimmunity through molecular mimicry. This is supported by a recent Italian study which found that individuals with gluten allergy also developed a significant allergy to their own thyroids, which disappeared when gluten grains were removed from the diet. Checking for serum levels of antibodies against gluten as well as thyroid antibodies is standard practice at The Hoffman Center.”

Again, no specific reference is cited, but I believe she is referencing the Italian study shown below, which focuses on pediatric patients with celiac disease prior to onset of overt thyroid disease.

Unfortunately, molecular memory has, in large part, turned out to be a nice idea, but rarely demonstrated for many autoimmune diseases.

“Although there is some evidence that infectious agents play a part in the pathogenesis of multiple sclerosis and many other autoimmune diseases it has not yet been proved that molecular mimicry is the initiating factor in any of these diseases.” [1]

Now, with all of that said, there is some evidence for molecular mechanisms of autoantibody production in celiac disease and off-target (i.e. thyroid) destruction.

In classical celiac disease, autoantibody production to a molecule expressed in the intestine called “tissue transglutaminase” (Ttg) is deemed necessary for progression to celiac disease.  Ttg is expressed in all over the body, including in thyroid tissue.  In context of celiac disease, Ttg becomes upregulated in many tissues as a result of inflammation. Secondary to that, “off-site” targeting of antibodies to Ttg initially generated in the gut is suggested to be part of the cause for inflammation and autoimmunity seen at other sites.   A recent 2009 study has demonstrated that patients with celiac disease have elevated thyroid antibodies which correlates with Ttg antibodies, and that those antibodies may contribute to the development of autoimmune thyroiditis.

Key points:

  • molecular mimicry has not been demonstrated to occur between gluten and thyroid tissue
  • inflammation and oxidative stress can cause upregulation of Ttg in the gut and in other tissues (including the thyroid)
  • “off-target” sites of immune activation for Ttg antibodies can precipitate immunity in the thyroid

Mimicry and mechanism aside, all of this still doesn’t answer the question:

3. Can a gluten free diet reduce thyroid diease?  Because of the clear (and potentially causal) link between celiac disease and thyroid disease, several groups have tracked autoantibody production to thyroid tissues AFTER putting patients on gluten free diets. They have mostly found that gluten free diets do not affect thyroid autoantibody production after over autoimmune thyroid disease has already occured. See: here.

References or legitimate scientific evidence that a gluten free diet can reduce thyroid autoantibodies after overt disease onset is severely lacking, however there seem to be many holistic health practitioners, acupuncturists, and nutritionists quick to quote “studies which show” that a gluten free diet can reduce thyroid autoantibodies.

There is one group from Italy that has demonstrated a reduction in autoantibodies indicative of autoimmune thyroid disease and type-1 diabetes following celiac disease diagnosis and treatment. This paper potentially demonstrates that removal of gluten from the diet of children, who have not yet progressed to overt diabetes or autoimmune thyroiditis, may reduce the risk of developing these complications later on in life. In addition, they mention that nutrient malabsorption due to celiac disease could be at the root of this phenomenon (quoted below). This impressive data, however, does not comment on or suggest that the same process could take place after overt disease (significant tissue destruction) has occurred. A key piece of the data will be to see if some of those children go on to develop disease, or if the protection against developing other autoimmunities following a life-long GF diet is for good.

“Our data, in agreement with data reported by other authors, suggest that the main etiological factor of hypothyroidism at diagnosis may be attributed to a decreased thyroid hormone synthesis as a consequence of isolated malnutrition, and the normalization of thyroid function was obtained by means of gluten withdrawal alone….Therefore, iodide malabsorption could strongly contribute to the etiology of nonautoimmune hypothyroidism in CD. [2]

 Key point: start a GF diet early to ward off other autoimmunities.

That said, there are still several people on-line who say that a gluten-free, casein-free diet have reduced their autoantibody load, and they have had to reduce thyroid medication [3].  What is not clear from these posts, however, is if these people were being treated for subclinical thyroiditis, or whether they had already had significant atropy/destruction of the thyroid.  Clearly research in this area (particularly in adults, and those with advanced thyroid disease) is warranted.

My personal journey: When I was first diagnosed with narcolepsy, I had normal levels of TSH, T3 and T4 (autoantibody production was not checked during this time).  A year after following a strict gluten free diet (about 2 years after my initial narcolepsy diagnosis), I was diagnosed with Hashimoto’s thyroiditis, and had abnormal TSH and T4 levels. At that time my autoantibody production was checked, and it was through the roof (>1500).  Since that time (about 2 years), I have never had my Tpo antibody under 1000, and continue to take desiccated thyroid for keeping my thyroid levels normal.

4. I have no doubt that people with autoimmune thyroiditis feel better on a gluten free diet. In fact, several of the references included within this article note that while their patients to not see a decrease in antibody production, they do note “feeling better” and having “symptomatic” improvement of autoimmune thyroiditis on a gluten free diet.  This makes sense in the context of inflammation and autoimmunity. If you remove gluten from your diet, you remove a significant amount of inflammation.  Lessening inflammation (in whatever form it takes) is bound to have a positive effect on inflammatory conditions, including autoimmune thyroid disease. While symptomatic improvement is clear, it is not necessarily clear that gluten free reduces overt disease after the process has been well established, and there is significant atrophy of the tissue (at least for the thyroid).

Key point: Go gluten free. Reduce inflammation. Feel better.

5. Supplementation: There is a clear connection between selenium and thyroid function. Selenium is a trace mineral that is found in higher concentrations in endocrine tissues (such as the thyroid); therefore it makes sense that decreased intake or absorption of selenium should have a negative effect on the thyroid. I have had both selenium and iodine checked, and have no deficiencies in either, however the papers referenced by Kesser in his selenium article  demonstrate that benefits of supplementation can be seen even in selenium-competent patients (a phenomenon called “saturation”).

I think supplementation prior to disease for underfunctioning thyroids (not already destroyed by autoimmune attack) might be a good option for most, particularly if there is undiagnosed/diagnose celiac disease causing a malabsorptive condition. Please note: I am not recommending individuals with thyroiditis, subclinical thyroid disease or any other disease supplement with selenium. I am not a practitioner.

As was pointed out by Chris Kesser, a study has demonstrated that selenium supplementation may reduce autoantibody titers.  Other groups, however, have demonstrated (using larger cohorts) that selenium supplementation does not improve thyroid antibody production.  Even then, however, selenium supplementation seems to have a positive effect on “well-being” and “mood” in patients, even when autoantibodies do not decrease. It is also noted in the previously reference article that there is good tolerability with few side effects of supplementation.

While selenium does not act on the thyroid directly, it is necessary for the T4 to T3 conversion, and also can take part in NF-kB signaling, by limiting inflammation during the “acute phase” of the inflammatory response. I am all for limiting inflammation in the context of autoimmunity!  

 Key points: 

  • Selenium malabsorption due to celiac disease may precipitate hypothyroid functioning or altered immune signaling, thereby precipitating or maintaining thyroid autoimmunity
  • Selenium supplementation has been shown to reduce thyroid autoantibody titers in some studies, but not in others
  • Even in those studies where autoantibody production was not altered, patients reported having a better “mood”
  • Selenium may act by controlling inflammatory processes; and, again, controlling inflammation is always a good thing.
  • Selenium supplementation seems to fall under the cateogory of “do no harm” with the potential to do good. 
All of that said, stay tuned for a Selenium Supplementation Experiment!  Is anyone taking selenium for thyroid health? Have you noticed a difference? How much do you take?
Thank you for all of the wonderfully thoughtful comments – keep ’em coming!