Beginner’s Guide to Histamine Intolerance

Starting with a crash course on how to research on the Internet.

Important background information: I have an MS in Applied Sociology. I spent years in college learning how to identify objective sources for information. Clearly, you don’t know for sure that I’m lying, but who would lie about one sociology degree, let alone two? Sociology degrees aren’t sexy. Basically, a good rule of thumb is to judge every nonfiction book (and personal website) by its author. A doctor writing about histamine intolerance is going to do a better job than I will. Also, if someone is trying to sell you something in every single article they write, maybe they aren’t the best source. Or at least not your first and only source. I recommend looking for information that’s the same across multiple sources. A journalist trying to educate you about something is someone who’s good at telling people about stuff and things, not automatically good at researching stuff and things.

Update Jan. 7, 2018 – I saw this on Twitter. A guide to read and understand scientific papers for a non-scientist. (There’s a PDF link included in the page linked.)

Now that’s over and we can start. First and foremost, histamine is important and your body needs it. It’s necessary for healing. However, your body doesn’t need buckets and buckets of it.

I’ll start with some online sources and then a couple of books. When I started researching histamine intolerance there was very few things on the internet when you searched simply “histamine intolerance” and now such a search brings up clear easy to read sources as well as confusing sources that want you to buy recipe books or expensive supplements, or both. I think I started in 2008 and in the last 3 years the information seems to be growing exponentially. The first source Google provides is actually written by a doctor. Supposedly. I hope. She could be lying. but –  She also refers to one often cited academic journal article about histamine and histamine intolerance.

Side note, don’t be afraid of academic journal articles. I would suggest reading them slower – without skimming – if you’re unfamiliar. Also if you can, print it out and underline or highlight the parts that interest you. You’ll find that histamine intolerance is a little easier to handle if you understand some of the science behind histamine and what it does to your body. It’s completely understandable if you don’t want to start there though and so I’m only including one journal article here.

This article titled, Histamine and histamine intolerance, was published in The American Journal for Clinical Nutrition. I especially like this article because of a table that summarizes, or breaks down, symptoms mediated by histamine. Basically histamine is involved in the process of feeling that symptom. Again, it’s important to remember that your body does need histamine to function.

There are lots and lots of other online sources and remember they aren’t all equal. I recommend looking for different sources that agree. (Yes, I’m repeating some of the important things on purpose.) Also consider the type of information you’re looking for. For example, there are a ton of lists of high histamine foods out there and very few are exactly the same. You will probably find you can eat small amounts of some high histamine foods and that other high histamine foods are very bad things. With histamine intolerance, all food lists should be treated as guidelines. You know your body, you have to test on your own. However, some other information like food storage and preparation is fairly standard and doesn’t take a college degree to understand. Let’s continue with sources.

If you only want one link about histamine intolerance for now then go here.

1. This one mentions handling and storing of foods. Old food is higher in histamine and so this is an important factor of histamine intolerance diets. This is probably the biggest and most important thing you can do that I guarantee will make you feel better.

2. Food lists: by degree of tolerance, a more general explanation, and a list meant to help control chronic hives. (But at the time this was posted the 3rd link didn’t work. It’s worked in the past so I hope it’s temporary.) I recommend using a book for a food list and not getting bogged down in the details. I recommend using a food list to help you out in the beginning and help determine the real big trigger foods you need to avoid. Like for me, the last time I ate fresh grapes it was as if I was allergic to the grapes. It was horrible. There are high histamine foods you should (eventually) be able to eat small amounts of. Especially if the food in question is fresh.

3. A detailed site, which includes more than just food intolerances, by a board certified practitioner (That’ll make more sense when you see her bio) from Australia. She’s not a doctor, but she clearly has done something to educate herself. She’s also not pushing books at your all the time. I wouldn’t use this as a primary site, but it’s useful to see what information is the same across different sites.

4. This is a good general website about food intolerances and also includes a lot of information on histamine intolerance. The majority of the histamine intolerance information comes from research completed by Doctor Janice Joneja. She’s been doing this for decades. Note the histamine intolerance page has a lot of links and tons of information. It’ll be overwhelming if this is new for you, but it’s a great link because it’s updated!

5. Chris Kresser also has a site with regular blog posts and a ton of information about more than just histamine intolerance. You’ll note he has been studying and teaching for awhile.

6. How about my favorite book ever for food intolerances and food allergies? This was my first source for histamine intolerance information as well as other food sensitivities. It helped me figure out my sulfite sensitivity too. I discovered histamine intolerance by accident because I already owned this book due to being diagnosed with food allergies and I was paging through it… I stumbled on the histamine intolerance diet and discovered I’d already eliminated most of the problem foods on my own. There were just two more foods, vinegar and tomatoes, and I was effectively following the diet. (Dude tomatoes are in so many places!) There was a few other things too, like hydrolyzed oils and preservatives that I didn’t know about. At the time, removing vinegar and tomatoes helped a ton. It’s probably worth it even if it sounds painful. Literally, this book saved me.

7. If you can find it used, this is best described (?) as an updated version of that book in #6. I say used because I think it’s sold as a textbook and so automatically more expensive.

8. I recommend anything by Janice Vickerstaff Joneja.

9. The concept of a histamine or inflammation bucket might be a good place to start in understanding the effects on your body. This site has a decent explanation for the inflammation bucket and I also find the site to be an example of something that is not a good first source. I am cautious about any site that says they research their posts but do not provide the sources with enough information to be able to find them and read on your own. I’m also uncomfortable with sites where every post or article also includes a sales pitch. Use caution with this website. Also, use caution with her Facebook group, when I tried to be a contributing member I found it full of people who didn’t want to learn and didn’t recognize that every body is individual and different.

It’s taken me forever to build this post because I wanted a collection of information without getting too in depth and detailed. There’s so much more you could add to this, like detailed information about how histamine works in the body. But I feel most people aren’t going to care about that immediately, they want to feel better sooner, then learn about the other stuff. This is probably verging on too long as it is. Regardless of the sources I’ve listed here, I think the most important things for searching the internet for information on histamine intolerance is to judge the quality of the source you’re using. Anyone can call themselves an expert on the Internet. I’m not an expert but I’m happy to share information so that other people can maybe learn things a little faster, and with less pain and frustration.

If you’re actually reading this and think I missed a large hole somewhere, leave a comment. Thanks.

Foods I cannot eat

I’ve decided to make a list of the foods I cannot eat (and things I cannot drink). If it’s here assume I cannot eat even a tiny bit of it.

I have to know every single ingredient of any food I put in my mouth. If I happen to just try a bite of something, I’m risking anything from being sick to my stomach for a few hours to a few days, to not being able to breathe. Not being able to breathe means risking death. Many of the foods listed here are foods I’ve had serious reactions to. If I’ve not had serious reactions to the foods, then eliminating the foods have greatly improved my quality of life.

This is also a work in progress. I’m beginning to feel like diet is not enough to control my symptoms for a variety of reasons. I’m waiting on the LP procedure to determine the MS diagnosis before I go back to my immunologist. Anyways, the list.

  • fish
  • shellfish
  • tree nuts
  • soy
  • artificial colors – especially red40
  • gluten
  • most dairy – I cannot eat aged cheese of any kind – even cheddar
  • cherries
  • blueberries
  • raspberries
  • strawberries
  • vinegar and fermented items – yes, this means basically no condiments
  • tomatoes
  • spinach
  • pumpkin
  • spices – cinnamon especially, but also allspice, cloves, nutmeg, and ginger, also curry and chili powder
  • MSG
  • foods that contain high levels of nitrites – If I eat regular cured bacon, technically I’m risking a migraine.
  • alcohol – I drink some amounts of gluten free beer, apple cider, and mead. Probably about 2 drinks a month? Technically I’m supposed to avoid it completely.
  • preservatives – especially those based of benzoates, BHT is another one. example: I cannot eat Rice Krispies because of the preservative in them.
  • grapes/raisins
  • dates
  • eggplant
  • red beans
  • tea
  • caffeine
  • bananas – recently eating bananas has given me migraines – I’m wondering if it’s because my latex sensitivity has gotten more extreme.
  • sulfites – also used as a basis for preservatives
  • corn – I’ve developed a sensitivity to corn but so far it’s based on the source and how much I eat. That’s how I know it’s a sensitivity. Popcorn at the movie theatre means a stomach ache for two days. Snack bag size of fritos from the machine? Stomach ache for at least a day. Mixed veggies with corn for dinner? No problem I’ve noticed so far.
  • chocolate
  • oat
  • flax

There are a few things that I can eat every now and again if I don’t eat too much. Avocado is one of those. I still eat chocolate but I only get it from one or two sources which I know are allergen free and have very few ingredients. I eat chocolate bars with three ingredients in them.

There are other things I need to be careful with. A big one is leftovers. I cannot eat meat that has been leftover more than 48 hours or I’ll likely end up with a stomach ache.

If you’ve stuck with me so far…. I challenge you. Pick up your bottle of juice, soda, tea, whatever and read the ingredients. If there’s something you don’t understand? Google it. I’ll bet you go get a glass of water afterwards.

This is why I’m actually hoping that the MS diagnosis comes through as a real thing, because then I can go on immune suppressing drugs and maybe, just maybe, my body will calm down and stop treating so many different kinds of food as poison.

If you want more information, including information about histamine intolerance, check this out.

The Eliminating Scary Medical Stuff game

In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.

Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.

Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.

Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.

Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.

I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.

Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.

This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.

Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.

*edit for more typos I missed in the first edit.

Immunologist visit – case study part 1

Last week I went to a follow up appointment with my immunologist. An immunologist is a bit like an allergy/asthma doctor except they know more about the immune system. My immune system is a special snowflake. This was my first follow up since my doctor said he would do a case study on me – as compared to throwing his hands up in the air and running in fear. I showed him information on histamine intolerance and the low histamine diet.

I waited 30 minutes and the visit with the doctor himself was about an hour and a half long. He took notes on his laptop through most of it. (MacBook Air) We went over a lot of things, including my migraines, asthma, allergies, food sensitivities and how easy (not) it is to be on the low histamine diet.

My biggest complaint for him was probably that I have to adapt the diet to me, there is conflicting sources of information about the diet, and despite my best efforts I can still have pretty bad breakthrough symptoms. Ok, those might happen on days I have chocolate – but there are other days I have chocolate where there are no breakthrough symptoms!

I also seem to be having problems with environmental triggers being worse. I explained some fun that took two days to recover from after sitting for about 20 minutes on my SIL’s couch. Shortness of breath, thrashed sinuses, foggy brain, the works! I’ve also been having problems waking up coughing in the middle of the night, like clockwork. I’ve since figured out that was a combination of two things, which I also told my doctor about. First one: environmental. Because of the fibromyalgia and increased commute times – we’ve gotten lax with vacuuming. You cannot get lax with vacuuming when you have four cats. I vacuumed the bedroom the afternoon of the doctor appointment and no coughing that night. Second thing: likely culprit was PABA in the vitamin b complex I was taking. It’s possible to be allergic to PABA and my breathing difficulties and gastrointestinal issues (I’ll spare the Internet those.) were likely caused by PABA. Especially since the issues got better over the course of 1-5 days after I stopped the supplement.

After discussing with my doctor, I’m going to research which b vitamins are useful for fibromyalgia and just take those specific vitamins instead of taking the lazy complex approach. (I’m already on just riboflavin for my migraines.) My doctor also didn’t have recommendations for me – he suggested I go with what I know my body will accept. Research required.

I kind of wanted steroids to help me get over the (likely) PABA reaction but I also didn’t necessarily want to deal with the side effects. My doctor told me to call if my asthma problems continue – even after I’ve recovered from the PABA reaction. My breathing issues have gotten better since vacuuming the bedroom and just with more time passing but I’m still having weird issues! I’m giving it a little more time and probably still calling the doctor so we can look at my asthma medicine.

Thankfully my allergy medicine seems to be keeping up. My hives seem to be better. It’s been months (?) since I’ve had a breakout. I still need benadryl but it’s as needed – not regularly. Now I need to figure out the eye allergy problems I’ve been having – but I know know if that’s a question for the immunologist or the ophthalmologist.

Doctor told me to come back in six months because I have a lot going on with my migraines. (New patient neurologist visit isn’t for over two months.) I can still call with an update if necessary and I figure I’ll go back sooner if it seems necessary. I did also find out something important – asthma and fibromyalgia should not really effect each other. (Note to self: remember to ask rheumatologist too.)

We’re definitely now going down the path where I have a ton of food allergies/intolerances caused by, at least in part (?) the histamine intolerance. I have no idea if the gluten (and now corn) intolerances are related to the histamine intolerance. My immune system is a special snowflake who is also paranoid. It seems like most of the food allergies I showed positive before are probably false positives. Problem is I might have some false negatives too. I’m still avoiding a lot of foods and paying special attention to the ones that give me acute reactions where I cannot breathe.

I’m just glad I’ve had less problems with face flushing and hives. The face flushing makes me look and feel badly sunburned.

Next steps:

1. Get migraines under control.

2. Clean problem areas of the house more often.

3. Exercise more for the fibromyalgia / asthma.