When I first started writing, I read a lot about how diet can help with neuro-behavioral conditions. The stories were (and are) everywhere, but I never wrote about it, because I had not crossed paths with that world–until I started coaching. Once I started coaching, I started meeting parents of children with Autism who were treating their children with diet and other gut healing modalities; these were many of the same modalities I was using to heal from colitis. So, I started learning, and last year I had the opportunity to speak at Autism One, which is the largest conference on Autism in the U.S. That is where I met Beth whose story I bring to you today. Beth, a health coach from North Carolina, helped heal her son from Autism using the Specific Carbohydrate Diet (SCD). I hope her story can be an encouragement to you that diet does work wonders.
Onward to Beth’s Story:
SCD and Autism – Miracles Can Happen
Hello! I am a health coach and colleague of Matt’s. Matt and I met recently at a conference and learned of our shared love of SCD (the Specific Carbohydrate Diet.) Matt was so excited by the story of my son’s recovery from autism using SCD, he asked me to write this guest blog with our story of recovery and hope for autism. So here’s the story…
When our then two-year-old son’s teacher asked if the school psychologist could attend our semi-annual parent-teacher conference, I didn’t think twice. Our son had some unusual behaviors she had been observing in the classroom. As the meeting started, the psychologist didn’t mince words opening the meeting with, “Your son has Asperger’s or High Functioning Autism.” WHAT? “We can teach him some rote skills such as making eye contact, and he is so high functioning, he’ll do well. It’s possible he could even have a job and get married someday.” WHAT!
This couldn’t be true. Neither my husband nor I had anything like autism in either of our families. This couldn’t be happening!
Although he had a large vocabulary, he was unable to use language effectively. He spun in circles, stared at objects for long periods of time, couldn’t engage with other children appropriately, was constantly rocking and moving, made uncontrollable noises, became frustrated with transitions, and was sensitive to sound.
Worst of all were the violent tantrums that sometimes lasted for hours. For example, once I accidentally broke a piece off of one his Lego creations, and he cried, screamed and hit for hours. I learned to watch him closely around babies, because he couldn’t tolerate their lack of predictability. He would step on their fingers and or push them.
We found our son the speech and occupational therapy the psychologist recommended. We treated him for years, but saw little improvement if any.
I had read that autism is caused by gut problems, and diet helps – a lot. A proper diet reduces or eliminates gut inflammation which causes the neurological inflammation that leads to autistic behaviors. The science made sense to me. We started with a gluten-free/dairy-free diet. It gave him little relief, but I believed in the science so I kept it up for ten months.
Then, one week after he had a particularly violent tantrum, I decided that I couldn’t go on with the status quo. I had to make something more happen. They say when the student is ready, the teacher will come. Sure enough, as soon as I vowed to improve my son’s life, I met a mom who had recovered her daughter using SCD!
The thought of SCD, a diet free of any starchy, sweet or processed foods, was overwhelming. What would we eat if we couldn’t have cereal or potato chips or rice? It took me months to get up the nerve and the fortitude to give SCD a try with my whole family.
Why my whole family? First, my typically developing daughter and I also had health issues that promised to respond well to SCD. Second, I couldn’t bear the thought of restricting my son’s food while the rest of us continued eating pizza and ice cream. That would be like continuing to keep liquor in the home of a recovering alcoholic. Plus, I am convinced to this day that SCD is an amazingly healthy diet for everyone because it eliminates junk food, foods with low nutrient density, and foods that mess with blood sugar.
So, I took off work one Friday to lay the groundwork for SCD using a great book I found at SCDLifestyle.com. Our family started SCD on Saturday. We called it a one month test.
Within a week the miracles started happening! On day two of SCD, my 6 year-old son told me he felt “stupendous.” He probably didn’t remember a day in his life without the severe stomach pain that had plagued him. I was starting to realize that the tantrums may have been triggered by seemingly insignificant issues, but the real cause was gut pain and feeling plain rotten. SCD was making my baby feel better!
At the end of week 1, I knew we were on the right track. We had a neighbor over for dinner, and my son walked right up to her and looked her straight in the eye and chatted with her. I said to her, “OMG, am I crazy or did he just make total eye contact with you and chat with you!” I started pinching myself; it was almost too good to be true.
Then, I looked over to my neighbor’s baby who was lying on the floor. My son was lying on the floor next to the baby smiling and saying “goo goo gaa gaa.” It was such a momentous moment! I remember my neighbor saying, “Don’t cry. Don’t cry.” It was all so surreal, I was in shock. I couldn’t cry.
At the end of our “one month test,” we kept right on going. Within 3 months, he was performing so well in his mainstream classroom, the school notified us that he was no longer eligible for special education services. It was the happiest day of my life!
It’s now been three years since we started the SCD diet, and my son never asks to go off it. He remembers the pain he experienced before and doesn’t ever want to go there again. Having to take his own food to parties and eating differently than everyone else is a small price to pay for being in control of his own behavior, feeling good and being free of pain. Plus, he is proud of his healthy food choices.
According to the ATEC (Autism Treatment Evaluation Checklist), he is now considered “recovered” from autism! An ATEC of 30 or less is considered mild autism. An ATEC score of 10 or less is considered not autistic. Four years ago when we started the GFCF diet, his score was 75. Today, it is a 9!
He does still have Attention Deficit Disorder and dysgraphia, and we continue to work with integrative physicians to find the last pieces of his health/behavior puzzle. We have also worked with a Relationship Development Intervention therapist (RDI) who helped us give him the developmental skills he missed during his first years of life. His ADHD and other more minor challenges are slowly resolving.
Thanks to the Specific Carbohydrate Diet, herbs/supplements and RDI, his future is bright and full of POSSIBILITIES! What hopes and dreams would you reach for if you could recover your (or your child’s) health? It’s time to give SCD a try. It will improve the quality of your life immeasurably.
|BethSecosky is a health coach with POSSIBILITIES Health Coaching. She helps parents whose children have Autism Spectrum Disorder eliminate their child’s symptoms by providing information about strategies that work and providing support, focus and accountability. With Beth’s support, her clients’ children are able to live a more normal life – and the rest of the family can too.For a FREE copy of Beth’s “1-Page Blueprint for Healing My Son and Others From Autism,” click HERE.|
When I first undertook the topic of itching and IBD (Crohn’s and colitis), I did it out of frustration. I had itched so badly for almost five years—I didn’t sleep well, my skin was always dry, and my legs looked like I’d been attacked by a badger. So I set out to write about it, which is how I figure things out. I thought it would be just another series, and that my process for writing would apply: Generate topic; research and find lots of articles; apply noggin; write, relieve itching, help others to do the same.
Not so this time.
Sure, I found lots of studies on puritis (itching), chronic Urticaria (hives and friends), and other histamine related skin conditions, but I didn’t find anything that fit what I was searching. I didn’t find any researchers who seemed interested in the root cause of these conditions in a way which could be beneficial for me or for anyone who reads this blog.
So I was stumped; I was forced to think outside of my box. And that took a long, long time.
That is what makes this post different from lots of the other posts I’ve done. The information I have to give to you is solely from my experience, and what has worked for me. As usual, I’ll give you the theory behind why I did what I did, and why I think it worked, but they are just theories, and you should take them with a grain of salt. I’ve learned a few things about theories in my time trying to heal from colitis. The chief of them is this: I don’t always need to have the right theory to have the right treatment. A good example is with the infection approach to IBD. I’ve written in other posts about the pathogenic shift in the collective gut bacteria being a likely cause for IBD. Whether I am right or not, whether IBDs are due to one pathogen, a suite of pathogens, or a pathogenic shift in the entire community of bacteria in your gut matters less than the fact that the treatments which shift the gut bacterial community, like diet, natural antibiotics, probiotics, and fecal transplants, are extremely effective in helping IBD and IBS.
So, if you take exception to my theories, that’s fine, please help us all by adding your helpful theory to the comments below, and by writing your comments in a way that is the most helpful to the most amount of people who might read them.
Now on to the meat of the issue…
Itchy, you ain’t my itchy no more.
A note of caution: The subject matter below is complex. If I had a lifetime of posts, I couldn’t do it justice or figure it out completely. I’m an incorrigible do-it-myselfer, and I needed help with this. I hired a specialist to help me with mercury removal and balancing my endocrine system. It’s serious stuff with serious repercussions if you do it wrong. Don’t start mercury removal, and don’t mess with adrenal and thyroid hormones without help. Please.
A Friend’s Suggestion to Investigate Mercury
Almost two years ago, I was meeting with a coaching client, a man in New York about my age, who was about to do Fecal Transplants for a gut that had been terribly out of whack for years. He didn’t (and doesn’t) have IBD, but we both thought that fecal transplants would really help him. Over the course of several very interesting coaching conversations, he and I became friends and continued to stay in touch even though fecal transplants did not help his gut issues. One afternoon on the phone, after venting to him that my gut had gotten so much better over the last five years, but that I was still left with other frustrating symptoms like itching, brain fog, energy problems, and several other things, he suggested that I look into mercury toxicity and an underperforming endocrine system (adrenals and thyroid, mostly).
I was polite, but I kind of blew it off. I thought, even though he was really bright and had become a good friend and resource, that maybe he had gone a little far afield with the mercury thing. But he persisted. Finally he gave me a photocopy of the diagnosis section of a book called, Amalgam Illness, Diagnosis and Treatment…, by Dr. Andrew Cutler. In that section, the doctor uses a scoring system to rate symptoms, and clinical observations to give the reader a probability that mercury toxicity is an issue for them.
My probability? 43/44. If someone told you that you had a 97.7 percent chance of winning the lottery, would you buy a ticket? So I called my friend and asked how I should get started. I will write more about mercury in other posts, so those of you itching for more (ok, that was funny, admit it) will have to wait. The point of this post is to get at why I was itching, and it had something to do with a metal called mercury. My body was evidently overburdened with it and it was throwing things out of whack.
Sulfur, Mercury, and Itchiness.
The solution for mercury toxicity is chelation. Chelation is the intentional and careful use of certain sulfur compounds (DMSA, DMPS, glutathione, thiolized silica) to bind heavy metals and bring them out of the body. The two main elimination pathways are the kidneys and the gut. Without chelation, your body naturally removes the majority of your heavy metal exposure and other toxins through the liver, into the bile, and excretes them out of the gut, through your stool. (The kidneys do some work here too, so does the skin.) But what happens when the gut elimination pathway is damaged by inflammation? For a variety of reasons, not the least of which is reabsorption from leaky gut, the elimination of heavy metals slows or in some cases stops, which leads to an unnatural accumulation of, in my case, mercury (and to a lesser extent, arsenic, but I will focus on mercury here).
Chelation compounds aren’t the only compounds which move mercury in the body. In theory, any sulfurous compound will mobilize mercury. A good example of this for me was that sulfurous supplements and foods (garlic, and onions are the worst) would trigger rashes that lasted 6-8 weeks. At the minimum. They left me with a sleepless night of scratching. It took a while for me to figure this out, and it took even longer for me to believe this is what was happening. Over the past 18-20 months, I have put myself through more misery than was needed because of my natural skepticism and desire for research. Had I just called my friend in New York, he probably could have told me (or maybe he already had) to stay away from sulfurous foods until my mercury levels had lowered significantly.
So if mercury was causing or strongly contributing to my lingering issues, why did it make me itch? What was happening?
Genetics, Chelation, Glutathione, the Endocrine System, and My Itchy Skin
On my friend’s suggestion, and on the direction of a specialist I hired, I got a hair test, which confirmed my mercury diagnosis (See Dr. Cutler’s book on hair test interpretation). I also got a genetic profile done which showed several mutations in the liver methylation (detoxification) pathways. It’s not my intention to get into the weeds of methylation epigenetics (a big, scientific term for how your DNA affects the way your liver clears toxins) here. That’s for another time, and plenty of people are writing about it.
What is important here is that these mutations made me a naturally slow detoxifier; my liver clears toxins more slowly than the ‘average’ person. It also meant that I have naturally low glutathione levels. Glutathione is a sulfur-based antioxidant (indeed, it’s your body’s main and most powerful antioxidant) that your liver needs in sufficient quantities to continue detoxification and clearance of toxins. These mutations (called SNPs, Single Nucleotide Polymorphisms), combined with leaky gut, meant that my bucket was full—all the time.
Since my liver was overburdened (it’s likely that it wasn’t just mercury that was overburdening my liver, but waste products from leaky gut, all of the supplements I was taking, and normal city-living toxicity all contributed—but mercury is especially burdensome, and by clearing it, many people can alleviate their symptoms), and since the kidneys are a minor elimination pathway for mercury (with the exception of DMSA chelation), the body can start to push it out of the skin.
Doctors have observed this phenomena for a long time, and have noted it in the literature and in case studies of acute metal poisoning. But chronic mercury toxicity is controversial because it is hard to measure. The body, if it can’t get rid of mercury in a reasonable amount of time, sequesters it in fatty tissue (yes, including the brain), carotenous tissue (like hair and nails), and some metals like lead are sequestered in the bones. In my case, I was itching wildly because my body was pushing out the mercury (and other substances) through my skin.
This elimination-by-skin theory was further reinforced by this: When I got a rash (which was very often of over the past two years), that rash upon receding would take with it the pigment from my skin, leaving me with vitiligo. When they asked, I would tell people that I was part snow leopard. It is interesting and not a little coincidental that the main ingredient in skin lightening creams is mercury—it destroys the pigment in skin. Sure, there may be other explanations, but I like this one. Eighteen months of chelation later, and my vitiligo patches are beginning to re-pigment themselves.
Endocrine Function (adrenals and thyroid)
Before I started any chelation, I got an adrenal stress profile done, and began tracking my basal temperature. Chelation is hard on the body, and often people’s adrenals and thyroids are weakened going into chelation, so need to be supported before starting the process of mercury removal.
Basal temperature, your body’s temperature first thing in the morning before you get out of bed, is a good indicator of adrenal and thyroid function. A consistent temperature indicates good adrenal function, and a normal (not high or low) temperature indicates good thyroid function. By tracking basal temperature, you can easily and accurately understand which gland needs support and you can regulate your dose using temperature too. This is how I am regulating my adrenal and thyroid functions during chelation—first addressing the adrenals (as thyroid can recover once adrenals are supported), then if needed after time, the thyroid. My adrenal stress profile showed that my adrenal glands were putting out only 20 percent of what my body needed (which explains why I was so tired among other things), and my basal temperature graph was all over the place—one day it would be 98.4, another 97.0, another 97.3, then 98 and so on. My adrenals were in trouble. So Before I started chelation, I needed to support my adrenals.
This took a long time. First my Naturopath started me on cortisol, because my adrenals were so weak. I self-regulated the dose based on my temperature and soon it was the same (97.7) ± 0.2 degrees every morning. Great, but my temperature was low, and I was eager to bring it up using thyroid support, but my chelation specialist encouraged me to wait a few months to see if the temperature would recover, since my thyroid blood tests were normal. Indeed it did recover with time, to 98.4, which is within normal. No thyroid support needed for the moment and I could begin chelation. Over time, I was able to transition safely, using my temperature readings, away from the cortisol (very powerful) to dried adrenal gland (still powerful, but less so). That’s where I am today. I am using dried porcine adrenal gland to regulate my adrenals during chelation. My hope is to downsize eventually to herbs, and then to nutritional supplements. Some people can do that, and others never quite get there. I am curious to see into which group I fall.
Dr. Rind in Bethesda, MD, has a detailed and easy to read explanation on his website about regulating adrenals and thyroid using temperature. For even more information, you can read the book, Your Thyroid and How to Keep it Healthy, by Dr. Barry Durrant-Peatfield (talks about both adrenals and thyroid and how to use the basal temperature method).
What I Did About All of This
Now you have the basics, an outline of what I think was going on with my wacky body: mercury. Yes, there are other possibilities. Yes, there other good theories that might match. That’s why it took me so long to write this post: the only way to test those theories was to test their recommended treatments. The only theory that has held up for me over time, and the one which has produced dramatic improvement, is the mercury theory. So I present it here, and what I did about it.
Here was (and still is) my strategy. I layered on each strategy over time in the order presented below, and over time my itching, brain fog, tiredness, sinus swelling, and yes even my vitiligo have all healed or begun to heal. (FYI, I’m generally following Quicksilver’s IMD detox protocol)
- Regulate, support adrenals and thyroid.
- For a time, remove sulfurous foods (onions, garlic, reduce egg consumption), caffeine, and chocolate (full disclosure: I failed to eliminate chocolate—It is one of the few non-SCD indulgences my gut will allow. Chocolate for me is a lifelong moment of indulgent weakness. I’m human.)
- Begin chelation: For this, I turned first to a homeopathic dilution (1:10) of a product called IMD, by Quicksilver. IMD (intestinal metals detox) is a very fine silica, each grain of which has bound to it thiol groups (sulfurous groups). Since sulfur groups bind metals, as this silica passes through your intestine (the grains are too large to be absorbed), it binds metals (it has a special affinity for mercury, though it does bind other metals too). Using the 1:10 dilution, I started very slowly, hoping not to cause another rash.
Incidentally, mercury accumulates in the epithelial wall of the large intestine, and causes inflammation of its own, which blocks or slows the normal elimination pathways for mercury, among other things. You may already be able to see the perpetual accumulation cycle that develops if the main elimination pathway is damaged or blocked. This is why it is important to remove mercury from the gut, and why I chose IMD instead of DMSA, the traditional chelator of choice.
- Build to a full dose of IMD: Build to 2-4 scoops of IMD/day
- Add the proper cofactors: These are outlined in Quicksilver’s protocol in detail. For me, it meant a mix of B-vitamins, proper amounts of selenium (through Brazil nuts) and molybdenum, and regular chelation pauses with a good multivitamin to ensure my body was continuing to accumulate the necessary minerals (which can be depleted by chelation).
- Boost glutathione levels: Because of the way my methylation mutations are expressed, I have naturally low glutathione, and because of the mercury and leaky gut, my levels are were especially low. I have two strategies for raising glutathione:
- Intake the proper amino acids: The key amino acid people write about for glutathione production is cysteine. There are others, but boosting cysteine seems to be key. So, how can I do that in a natural way? For me, I found a great Whey Protien Supplement that doesn’t bother my gut. Whey protein is well known to encourage increased glutathione production (some studies report almost 30% increase). Yes, there are caveats to this: some people cannot tolerate whey. In that case, they can substitute a quality pea protein—not as good as whey, but better than nothing. Also, some people with certain genetic mutations in liver pathways can get an unhealthy buildup of cysteine. This is why I used a complete protein supplement rather than buying a cysteine powder.
- Supplement directly with glutathione: This is tricky, because the studies show that glutathione supplements are notoriously bad at increasing intra- and intercellular glutathione levels. There is quite an argument about the efficacy of glutathione supplements because they are broken down in the gut, not well absorbed sub-lingualy, and tend to degrade quickly. There is one exception that has good absorption: Reduced glutathione suppositories. I have been using these suppositories for three months now. These are expensive, and that stinks, but they work. By the time I tried these my itching and other symptoms were lessened greatly (itching was down from an 8 on a 1-10 scale, to a 2, sometimes a 3), but they were still there and they still woke me at night. Ten days after I started the glutathione suppositories, my itching disappeared entirely. Three months later, my itching is still gone. As a reality check, even though these work wonders for me, I still have to be careful. If I eat raw onions or garlic, or have high mercury fish, I will itch again, but it is mild and short-lived whereas a year ago, those things would have meant another 6-8 week, sometimes full body, rash. I don’t know for how long my body will need these suppositories, but for now, I’m glad I have them. I think the long term solution is mercury removal, adrenal support, and probably amino acid supplements like whey protein.
Where I Am Now
I am 15 months into chelation, and it has been just over 24 months since I started working on my adrenals. I don’t know how long it will take to finish the protocol, and I don’t know how well my body will recover, long-term. For full disclosure, I’ve listed below the symptoms that have resolved and those that still linger.
Partially or fully resolved:
- Food sensitivities (itching, rashes) to apples, cooked onions, caffeine, bananas, avocado, bone broths, chocolate, cooked garlic, cheese (resolving), wine (partially resolved)
- Itching (98% resolved)
- Brain fog, forgetfulness (mostly resolved)
- Vitiligo (recovering slowly)
- Energy (increasing, more consistent, but still lower than normal)
- Depression (less severe, less often)
- Sensitivity to cold (less severe, less often)
- Gut (most days I feel ‘gut normal’. I can eat corn and rice now, but must watch my diet and stay on probiotics and other gut supplements)
- Dry cracking skin (resolving)
Yet to resolve:
- Sense of smell (still totally absent)
- Adrenals (still dependent on supplementation)
- Food sensitivities to raw garlic and raw onion
Onward to Health,
Last time I wrote, I promised a conclusion to my stories on itching and IBD. It’s taken me a long time to figure this one out; there has been lots of trial and error. Actually, there has been more error than success, but I’m close to the point where I can write that post. Stay tuned.
In the meantime, check out my story on HealthCentral.com. Health Central is a health-based media company. The group who did my family’s story focuses on telling the stories of people living with chronic illness. This story is about my journey with colitis and how it’s affected my family. It was pretty therapeutic talking about it with my wife, and I hope you enjoy it. My story is the 2nd one, but all 3 of them are good. Enjoy!
Onward to Health,
Hello…Hello…Hello! Is there anybody out there?
I feel a little like Pink Floyd in that it’s been a long time, nearly a year, since I’ve written, and if there is anyone left subscribing to my blog, I applaud your patience. The last time I wrote, I promised a series on itching and IBD. It’s been a difficult topic for me to explore and I’ll briefly tell you why:
- I needed a break from blogging. I promised when I started that I wouldn’t succumb to fluff. You know what I’m talking about—that by-the-title looks-really-interesting article which has absolutely no substance at all. It leaves you hungry. Like whipped cream, it tastes great but lacks nutrition. Making every article concise, precise, well researched, and useful takes more work and more energy, and with the onset of increased rashes, brain fog, and sleepless nights, I just didn’t have the energy. I know—excuses, excuses.
- There isn’t a great literature out there explaining the origins and treatments for itching and IBD. Given the little that’s written about it, and given that I’ve been suffering from five years of nearly ubiquitous itching, I needed time to experiment and journal before I felt I could write about it in a way that kept with my ‘no fluff’ philosophy.
There you have it, my not-so-great excuses for nearly a year of silence. I hope you’ll pick up with me and we can keep healing together.
Before you start reading: Itching and IBD are two difficult enough topics by themselves. Bring them together, and they are even more enigmatic. This is where you come in: if you have experiences, knowledge, remidies which have worked for you, please share them in the comments. If you see places where I’m just plain wrong, please add a correction in the comments—we will all benefit this way from your knowledge and experience.
Now on to the meat.
In my reading and experience over the past year, I’ve come across lots and lots of people who are suffering from infuriating itching as a concurrent symptom of their IBD. For some it seems cyclical (it comes and goes), for some it’s constant. Whether yours comes and goes, or comes and stays the first message I want you to hear: You’re not alone.
Lots of us deal with itching, rashes, and other histamine symptoms as a result of or as exacerbated by IBD. This may not be of much solace as you’re covered in wet towels on your tenth sleepless night, but it’s what I can give.
I chose to write about histamine intolerance because it’s the most likely explanation for the largest population of IBDers with itching. Chris Kresser did a nice piece on histamine intolerance on his blog. There is also a good post on MindBodyGreen. These are good primers to what I am about to discuss, but aren’t specific to IBD and both left more to be said, in my opinion. I recommend you read them.
What is Histamine Intolerance?
According to Maintz and Novak1, histamine intolerance results from a disequilibrium of accumulated histamine and the capacity for histamine degradation. In other words, when the amount of histamine in your body exceeds your capacity to get rid of it, you get the symptoms of histamine intolerance. Really the term “histamine intolerance” is a misnomer; I see nothing in the literature that tells me that people actually become intolerant of the essential neurotransmitter, histamine; rather the body just gets overburdened with it for one reason or another. It should be called “Histamine Overload”, or something more accurate. I’ll use the common term for this post, but now you know: I don’t like it.
How do I know if I have Histamine Intolerance?
If you have chronic itching, rashes, swollen or runny sinuses, allergy symptoms that just won’t go away, you may have histamine intolerance. Here’s a quick way to test: If you react to red wine, fermented food, or cured meat, you’ve increased your confidence that histamine intolerance may be an issue for you. You can also try a low histamine diet for 2-3 weeks to confirm; if your symptoms get better, then you’ve done something right (!).
Here are a few of the symptoms of histamine intolerance as outlined by Chris Kresser:
- Pruritus (itching especially of the skin, eyes, ears, and nose)
- Urticaria (hives) (sometimes diagnosed as “idiopathic urticaria”)
- Tissue swelling (angioedema) especially of facial and oral tissues and sometimes the throat, the latter causing the feeling of “throat tightening”
- Hypotension (drop in blood pressure)
- Tachycardia (increased pulse rate, “heart racing”)
- Symptoms resembling an anxiety or panic attack
- Chest pain
- Nasal congestion and runny nose
- Conjunctivitis (irritated, watery, reddened eyes)
- Some types of headaches that differ from those of migraine
- Fatigue, confusion, irritability
- Very occasionally loss of consciousness usually lasting for only one or two seconds
- Digestive tract upset, especially heartburn, “indigestion”, and reflux
I know for me, I’ve always experienced allergy-like symptoms—all of my life, even before colitis. Even in my earliest memories, I had runny nose, swollen sinuses, and a touch of asthma (which I grew out of). My father has the same tendency; so does my brother.
Why do I have Histamine Intolerance? (What are the mechanisms at play?)
There are four mechanisms at play here. One or a combination of these may be relevant to you.
- Genetic Downregulation of the Histamine Breakdown Enzymes: There are two main enzymes which degrade histamine in your body, histamine N-methyl transferase (HNMT, or HMT) which works to break down histamine in the central nervous system, and diamine oxidase (DAO) which works to break down histamine in the gut and ingested histamine. A mutation in the pathway of either can cause too little of one or both of these enzymes to be produced in the body, which would lead, over time, to an accumulation of histamine. So if you’re deficient in DAO, you likely have symptoms of histamine intolerance.
- Environmental Downregulation of the Histamine Breakdown Enzymes: A nutritional shortage of the precursors (vitamin B6, copper, and vitamin C) to these enzymes can be a cause of too little DAO or HNMT being produced. Also, certain drugs block the action of DAO (ask your doctor, if you think this may be going on).
- Causes of Low DAO
- Gluten intolerance
- Leaky gut
- Small intestinal bacterial overgrowth (SIBO)
- DAO-blocking foods: alcohol, energy drinks, and tea
- Genetic mutations (common in people of Asian-descent)
- Inflammation from Crohn’s, ulcerative colitis, and inflammatory bowel disease.
- Non-steroidal anti-inflammatory drugs (ibuprofen, aspirin)
- Antidepressants (Cymbalta, Effexor, Prozac, Zoloft)
- Immune modulators (Humira, Enbrel, Plaquenil)
- Antiarrhythmics (propanolol, metaprolol, Cardizem, Norvasc)
- Antihistamines (Allegra, Zyrtec, Benadryl)
- Histamine (H2) blockers (Tagamet, Pepcid, Zantac)
- Causes of Low DAO
Although histamine blockers, a class of acid-reducing drugs, seem like they would help prevent histamine intolerance, these medications can actually deplete DAO levels in your body
- Inflammation of the gutàleaky gut: Leaky gut from chronic inflammation, through mechanisms you can read in the cited paper below, releases histamine forming compounds that would otherwise stay in the gut mucosa, leading to an increase in total body burden of histamine.
- Therapeutic Probiotics: Oh boy.
- This is also why those of us with histamine intolerance cannot tolerate fermented foods. Indeed, I can’t even smell yogurt or sauerkraut without getting hives. The same thing happens with your therapeutic probiotics—they form histidine, and increase your total body burden of histamine. This would be okay, if our bodies could properly process, or otherwise had a lower burden of histamine.
- Chris Kresser suggests that bacterial histamine (really histidine, a precursor to histamine) release may be due to SIBO. This is fine, but it doesn’t have to be SIBO. We know that probiotic bacteria (e.g., lactobacillius) form generous amounts of the histamine precursor, histidine, during the fermentation process. Those of us who take therapeutic doses of lacto-fermenting bacteria for Crohn’s or colits can have the same elevation in histamine without having SIBO.
A fifth I might add here is heavy metal toxicity. There isn’t a lot of scientific literature out there to explain why people with, for example, mercury toxicity often experience itching. There is, however, a ton of clinical observations if you visit the mercury chelation/mercury toxicity healing forums. More about mercury in the future.
Hey, why didn’t you mention food?
Food is definitely a factor in controlling and alleviating the symptoms of histamine intolerance, but it is not a mechanism, in that certain foods can increase your body burden of histamine because they form or carry histamine forming compounds. Probiotics are kind of in this category, but I added them above because they are a ubiquitous natural treatment for IBD; thus, most of us cannot avoid them in some form.
One of the therapeutic options we have for treating histamine intolerance is a low histamine diet. Decreasing your intake of histamine rich or histamine releasing foods is a good way to begin to get an idea if histamine intolerance is your issue. Try it for 2-3 weeks and see if your symptoms get better. Below are a few lists from MindBodyGreen2 to get you started in looking at your diet for histamine levels. Click here for a more detailed look at the low histamine diet.
- Fermented alcoholic beverages, especially wine, champagne and beer
- Fermented foods: sauerkraut, vinegar, soy sauce, kefir, yogurt, kombucha, etc
- Vinegar-containing foods: pickles, mayonnaise, olives
- Cured meats: bacon, salami, pepperoni, luncheon meats and hot dogs
- Soured foods: sour cream, sour milk, buttermilk, soured bread, etc
- Dried fruit: apricots, prunes, dates, figs, raisins
- Most citrus fruits
- Aged cheese including goat cheese
- Nuts: walnuts, cashews, and peanuts
- Vegetables: avocados, eggplant, spinach, and tomatoes
- Smoked fish and certain species of fish: mackerel, mahi-mahi, tuna, anchovies, sardines
- Cow’s Milk
- Wheat Germ
- Many artificial preservatives and dyes
- Energy drinks
- Black tea
- Mate tea
- Green tea
- freshly cooked meat, poultry (frozen or fresh)
- freshly caught fish
- gluten-free grains: rice, quinoa
- pure peanut butter
- fresh fruits: mango, pear, watermelon, apple, kiwi, cantaloupe, grapes
- fresh vegetables (except tomatoes, spinach, avocado, and eggplant)
- dairy substitutes: coconut milk, rice milk, hemp milk, almond milk
- cooking oils: olive oil, coconut oil
- leafy herbs
- herbal teas
- Low histamine diet: It’s a good option. I covered this above. Try it with a detailed food/symptom journal for 2-3 weeks and see if your symptoms improve.
- Heal inflammation, leaky gut, SIBO: Duh. This is what everyone with IBD is trying to do—it’s the basis for my blog. That said, it’s still key—and the most difficult to do.
- Supplement with DAO: There are a couple of DAO supplements available, Histame, Daosin, and Histamine Block (the most potent). Supplementing with DAO helps to break down histamine in the gut, from food, and so in theory should over time reduce your total histamine burden. My theory (caution(!) this may be blatantly wrong) is that DAO may also help with the histamine produced by taking probiotics.
- Nutritional Support: Supplementing with the precursors to DAO and HNMT (vitamin B6, copper, and vitamin C) will ensure your body has the building blocks for adequate enzyme production. Just one thing: don’t supplement copper without the supervision of a doctor. Also, decreased histamine has been reported with high dose vitamin C supplementation.
- Phototherapy for dermatitis, rashes, vitiligo: Though not a root cause fix, focused UV-B is a common treatment for atopic dermatitis (aka, eczema), rashes, psoriasis, and vitiligo. Phototherapy can provide serious symptom relief for itching. In fact, phototherapy is the only effective treatment for itching from kidney disease. The light moderates the immune response in the skin. You need a dermatologist for this one.
Onward to (better) health,
- Maintz and Novak, 2007. Histamine and Histamine Intolerance. Am J Clin Nutr;85:1185–96.
- Myers, Amy. October, 2013. Everything You Need To Know About Histamine Intolerance. www.MindBodyGreen.com. Accessed 4/8/14.
- Kresser, Chris. Headaches, Hives, and Heartburn: Could Histamine Be the Cause? www.chriskresser.com. Accessed 4/8/14.