No, it's not DAO or eliminating the trigger foods. We've heard all that before. In fact, that's all we know about Histamine Intolerance —until now.
(11 Minute Read)
[This post has been updated to include resources for practitioners that provide BIHRT, Dutch testing and where to find help if you are suffering with HIT or hormonal challenges. Find the Where To Get Help section below.]
Histamine Intolerance (HI) is a fairly new allergy disorder that is gaining popularity. On the interwebs, no one can explain it better than Dr. Axe so I suggest that if you are looking for information about what HI is all about, click to his website to gain some knowledge, but, when you’re done reading come back to this page and I will tell you something that not many doctors aren’t talking about.
What causes Histamine Intolerance? We’ve been told that it’s diamine oxidase or DAO but it’s actually behind the scenes of DAO that is creating the problems.
DAO deficiency is what I would like to say is the prelude or introduction of the actual symptoms, manifestations, or warning signs such as the hives, breathing problems, anxiety, itching, nausea and more. The foods we are eating that are high in histamine—or those being called a histamine producer—trigger the symptoms. But what’s causing the absence of DAO? What’s causing this excess of histamine in our systems and why is it gaining momentum in recent years—especially in middle-aged women and no one seems to be questioning this? What can we do about it besides taking DAO supplements (which may or may not help) or by putting more restrictions on our diets? Most of us that have HI already suffer from food allergies and/or digestive issues and taking more food off our plates is not the answer any of us want to hear.
The first time it happened I thought I burned my tongue on a bowl of hot soup.
We’ve all done it, you know, not being able to wait until our food cools before we take that first bite? I had the little white “burn” mark on my tongue—about the size of a pumpkin seed and I didn’t really give it a second thought. Until about a week later when it was still there. I thought it was unusual that it had lasted so long but a few days later it was gone and I completely forgot about it.
The second time it happened, I awoke one morning with my chin itching and the skin around my mouth red and swollen. The skin area on the bridge of my nose, next to my eye was also itchy and red. It looked a bit like hives and so I took some benadryl for a few days and it slowly faded back. My late husband, Klink, of course told me to go to the doctor but I felt it had to be a reaction to something I had eaten the day before. I’m Celiac and dairy intolerant and so I assumed it was related somehow. Plus, having gone through 20 years of trying to figure out what was wrong with my gut, I didn’t have a whole lot of faith in traditional medicine. I was diagnosed with a duodenal ulcer when I was 27 and put on Prilosec for 2 years, which only messed things up in my digestive system even more. Five colonoscopies, three endoscopies, and several ultrasounds before the age of 40 left me frustrated and confused. My last colonoscopy was painful and exhausting and the doctor—after telling me I had a “twisted and torturous” colon—simply shrugged his shoulders and said, “um, maybe just eat more flax?”
Oh. Okay. Thanks doc. I hadn’t thought of that…
The third time was the charm. I awoke to an itchy chin and my lips tingling and burning. When I looked in the bathroom mirror I didn’t recognize the person I saw. Talk about freaking.out. My right eye looked like someone had snuck in my bed in the middle of the night and punched me in the face. It was red, swollen, and distorted. The lower part of my face around my mouth was inflamed with incredibly itchy, red, blotchy hives, and my lips…oh my poor lips. They looked like I had just walked away from a botched Hollywood botox injection. Or six of them. In one day.
How was it even possible my face could deform like this?
Then I noticed a little white patch on my tongue which felt like a burn and looked exactly like the one I had before. Within 3 days, the skin around my mouth was full of painful, oozing, blisters (sorry, that’s gross to even write), and the inside of my mouth was entirely white and full of burns. I couldn’t eat anything and it was painful to drink liquids or to even speak. It would be 10 days before I was back to normal.
So that’s when I called my doctor and was referred to an allergist. After asking what I had for dinner the night before my incident (Grass fed burger with avocado and fermented pickles) he told me he believed I had an Histamine Intolerance (HI). I had never heard of this before and was incredibly curious. He explained to me that histamine is naturally occurring in certain foods (yep, including avocado, fermented foods, and beef) and by eliminating the foods it would alleviate my issue. Basically, my histamine cup was full and specific foods would trigger it to overproduce, or literally, my cup would runneth over. He did a scratch test for Avocado which came out positive (yes I cried), but believed the issue would resolve after eliminating the culprits and lowering my histamine levels. He sent me home with nothing else except a list of foods not to eat. Great.
So of course I dove in head first to research and since this is a fairly new disorder the information is basically the same on every site. Seems there’s not much info out there (even less when I first started a year ago) and just like how most everything works on the internet these days, everyone just keeps repeating the same thing
DON'T EAT THIS
- 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
AND DON'T EAT THIS
- Cow’s Milk
- Wheat Germ
- Many artificial preservatives and dyes
- Leftovers of any kind
- The list on the left (or top on a mobile devise) are histamine producing foods.
- The list above are histamine releasing foods.
- The items not in bold have already been eliminated from my diet.
Add this to my already moderate diet of gluten and dairy free, my future of food looked pretty grim. The idea of restricting more foods made me feel incredibly hungry and deprived. I typically eat a healthy diet of sustainable (grass fed, ethically sourced) protein, organic veggies and fruits but started to live in fear every time I took a bite of food. I hated living like this and I knew it wasn’t serving me. I had worked so incredibly hard over the last 15 years to improve my diet, my health, and my gut and I was so distraught that more food was harming me. It just didn’t seem right to me.
I shouldn’t have to be afraid to eat.
To give you a time-frame on this, the first incident happened in the fall of 2015, about a six months after Klink’s third cancer diagnosis and the episodes were about 4-6 months apart with the third one happening in late summer of 2016, about 3 months before he died. That’s when I went to the allergist. I also understood that stress could be a contributing factor, however, at that time I believed it was a reaction to something I ate because it seemed to make the most sense.
I was doing alright with my new food restrictions until in March of 2017 when I had another “flare-up” as I now call them. I knew there was something deeper going on as I was keeping a food journal and I had had no trigger foods the night before. It had to be stress related or something else because I refused to believe that now any food, at any time could cause this horrible reaction. I refused to believe it was only about food and I refused to live my life like this. I was shocked, confused, and down-right furious that this continued to happen. I was hangry! There was obviously an underlying issue I needed to address. Was it because I was painting the night before? What the f*ck was my body trying to tell me??!! I’m intuitive, I listen to my body, I’m incredibly healthy and had been for many years, I pay attention to signs of distress and adjust, but I could not figure this out for the life of me.
Hey Universe, please send me a sign. I’m listening.
In an inspired moment I got my answer. I posted on Facebook for recommendations to a new allergist (still thinking that was the problem) and a former employee messaged me within 5 minutes saying she was at an allergists office RIGHT NOW for her young daughter who was struggling with food allergies. After several messages back and forth with her singing this doctors’ praise, I googled him up and then called to make an appointment. And dang if the Universe wasn’t on my side because I got an appointment the next day—and in the throws of a massive flare up for the doctor to see. When things happen with this much synchronicity it’s hard to deny that they won’t work out for the best.
Walking in the next day with a mouth full of blisters, a cockeyed face, and 7 pages of a requested health history documenting my entire life from childhood to present (have you ever had a doctor ask you for this?) I knew this was going to be my path to healing.
He seemed completely unimpressed by my face.
Dr. Tano and I talked for almost 2 hours that first appointment (again, have you ever experienced this with a doctor?) and by the time I left I had a clear understanding of what was happening inside my body and a plan to balance and heal. He was so confident and sure about this that I couldn’t help believe it myself. I left his office that day with a prescription for allergy meds, a hormone diagnostics test, request for blood work, and most importantly a feeling of hope that I hadn’t felt in 2 years. It was strange, but as I was there I kept trying to tell him of my symptoms and he would just grin, nod his head and say, “Don’t worry”, and then continue to ask about my health history. Of course he already knew the solution to my problem but he needed to know me—the whole me—and then he had to help the whole me understand what was happening to the rest of me.
He didn’t simply repeat the same old Histamine Intolerance story, he explained the true cause and it was unlike anything I had heard or read about before.
Turns out there’s a game of Domino’s happening inside my body (most of our bodies) and the HI is a actually a symptom of this game which triggers a release or manifestation either visual or sensory; I.g. hives, blisters, itchiness, breathing difficulties, etc. This release was my “flare-up”. I had believed so strongly that there was a bigger issue and I was right. The HI wasn’t the main culprit and food wasn’t the enemy, they were just the messengers.
It was hormones. Out of whack, discontent hormones that were affecting my entire endocrine system —including my GI track—go figure. My progesterone was basically non-existent, my good and bad estrogens were a mess which made my testosterone wonky and gave me a slight thyroid issue. The imbalanced estrogen was “pushing” my histamine levels to the overflow mark and it only made sense that any slight provoking would be like the last drop of water that triggers the overflow of the entire tub. It made SO much sense. I had started peri-menopause at 36—had a helluva a time with it—and by the time I was 40 I was in full-blown menopause and post menopausal at 44.
I never took synthetic HRT but did use natural progesterone cream (derived from yams) during peri-menopause. This is also when I found out I was celiac and made enormous strides in changing my diet and lifestyle. But a lifetime of being surrounded by phytoestrogens and xenoestrogens such as Bisphenol A (BPA) in plastics took it’s toll. It only makes sense that HI affects middle-aged women the most!
Our hormones have been affected since we were little girls. We consume dairy that’s full of hormones, drink out of plastic bottles and eat out of plastic containers that contain BPA (it’s also lined in our canned goods). We may or may not have been on birth-control, we may or may not have been pregnant, we consume commercially raised beef that are raised on hormones, and we eat GMO foods.
And hey you guys, you are not exempt from this problem because estrogen is not just a girl thing. You’ve got it too and are affected by this as well. Ever hear of man-boobs? Men with breast cancer? If your having HI symptoms I’d pay attention here.
Ok. Let me circle back.
What I mostly love about Dr. Tano is that he’s an Integrative Immunoligist and takes a whole body approach to my wellbeing. The allergy meds were a temporary fix until I could get my hormones balanced which we did through bioidentical and compounded HRT a diet high in cruciferous veggies, elimination of phytoestrogens and xenoestrogens, along with some supplements to bring some vitamin and mineral levels up. I also needed to reduce stress which is a major factor in hormone imbalance. I felt confident this was easy for me to do since I had lost my husband six months prior and the stress of his illness no longer overshadowed me. There was no quick fix to this and I knew it would take time but boy was I up for it. It took me years—maybe my entire lifetime— to get to this state of hormonal imbalance and I knew I couldn’t expect it to change overnight. I had to slow down the momentum and turn the boat around.
In August at my first follow-up appointment, we rechecked my hormones and blood work and even though I still had a long way to go, we started to see some improvements. I was feeling better too having stopped the meds some 6 weeks prior when I no longer felt a constant tingling sensation in my lips.
And then in mid-september I had another flare-up.
I stared in the mirror in total disbelief. What did I eat? What did I do to trigger this? Hadn’t I been feeling better? Wasn’t I on the right path? Is it not really hormones after all? I believed that this was the underlying cause but why, why, why, when things were starting to improve, could I have gone backwards? That’s when I sat down and took a hard look at my life and saw clearly what I needed to do to eliminate my last big stressor and I took the necessary steps to do it. Because I wasn’t reducing my stress levels I was in a perpetual state of two-steps forward and one-step back momentum and this was preventing my body from getting into balance. I couldn’t rely on just the supplements and bio HRT to get me back on track, I had to make some important lifestyle changes to make this work.
The positive news about this last flare-up was that I could tell things were actually starting to change and the healing of my hormones was happening. This particular incident wasn’t as severe as they had been in the past and it didn’t last as long either. I felt confident I had turned a corner. Afterwards, and without taking anymore meds, I continued to pay close attention to what my body was telling me. If I noticed even the slightest hint of tingling lips, a faint itch around my mouth, difficulty catching my breath, a dry throat, eyes burning and/or a slight distortion in my right eye when I awoke I was acutely aware that they were signs that I was somewhat off course. I noticed these symptoms when I ate specific foods like tomatoes or if I was spending too much time working on my new business and not getting in my exercise or down-time. These modest symptoms were (and still are) keeping me present and I was really paying attention to my choices. I also found I didn’t have to eliminate trigger foods, just reduce them. I was really starting to listen to my body so I decided to test myself to see if I could tolerate Avocado and I could!
Although there is no quick fix to healing HI, it most definitely can be corrected with the help of a qualified Integrative Immunologist, along with our efforts to change our lifestyle. I also can’t help but think of all the future problems, diseases, and illnesses I just prevented because of this work. Click here to listen to the first video as Dr. Tano explains how hormones play a role in allergies and HI.
I cannot stress enough that what I’ve explained here cannot be done without the supervision of a qualified doctor.
I’ve had a series of hormone tests, blood work, and diagnostics in the past year and everything is analyzed by my doctor. We meet every six months and see where I’m at, how I’ve improved and the next steps to take. This is not as simple as going to the market and getting some natural progesterone cream and calling it good. You could do even more damage to your system!
Please DO NOT SELF DIAGNOSE and try to fix this on your own. Hormones are an extremely complicated business and need a delicate tap dance of the correct dosages of the right hormones, to find the correct balance. We are all individual and what worked for me isn’t what will work for you. There is a reason I didn’t give you dosages or supplement names or types in this post because you’re body is unique and you need to speak to a professional to figure out your own game plane. And please note that DAO supplements will not fix HI, it will only mask it. Get to the root of the problem first.
Where to get help.
- Check out The Institute for Functional Medicine to locate a practitioner near you and request hormone testing either via blood, saliva, or both.
- Dutch testing is a comprehensive assessment of sex and adrenal hormones and their metabolites and is used by many practitioners now. The Dutch Testing website also has a practitioner locator so you can find someone in your area [or possibly telemedicine.]
- If you are challenged with peri-menopause, menopause, or post-menopausal symptoms, locate a doctor who specializes in Bioidentical Hormone Therapy (BHRT) on the Bioidentical Doctors Directory.
Best of luck to you!
Breathe Deep and Live Well,
**UPDATE 3/7/18: With the guidance of Dr. Tano, I continue to take my bio HRT and recommended supplements and I have been free of any issues since September 2017. As of this writing, I am currently doing a 7 day juice cleanse to detox my system and upping my cruciferous veggie intake. 02/19: Still doing well! I am happy to report I have not had ANY Histamine flare ups since Sept 2017!
**UPDATE 5/7/19: Last visit to Dr. Tano was the best so far. My hormones— progesterone, DHEA, estrogens, thyroid, etc, —have completely balanced along with my vitamin D levels. I am feeling really, really, good and have not had ANY histamine. reactions for over 18 months! I received a clean bill of health from the doc and just need to stay on my regiment of supplements and BI HRT and I should be good. I have been able to eat and drink without restrictions (except, of course, for gluten and dairy) — including all high histamine foods, wine, and kombucha— and have had NO issues whatsoever. Dr Tano said when I first met. him. that there is an underlying cause to HI and it lies within the endocrine system. It made total sense to me as that’s the foundation of our bodies and when our hormones are wonky—everything is wonky.
**UPDATE 3/9/21: Still free from any symptoms and flare-ups.
**UPDATE 2/16/22: Still free from any symptoms and flare-ups. Dr Tano is no longer taking new patients.