Not a cure

On New Year’s Eve 2013, I drove to Whole Foods with my color coded list of organic, low histamine foods. I spent two hours finding unfamiliar products and reading labels. I spent $300 on six bags of food.

On New Year’s Day 2014, I cooked low histamine food with my newly purchased groceries. It was the beginning of an experiment. I was going to go low histamine for 30 days in the hopes that it would calm down my mast cell reactions, autoimmune diseases and persistently debilitating pain. I had carefully planned menus and food prep schedules for all of January.

By the end of the first week, I didn’t know if I hoped this diet would help or not. Eating low histamine when work out of the home is a royal pain in the ass. You can’t eat leftovers, so you have to cook every day. I found that since I wasn’t eating bread type products, the meals were less filling, so I had to eat more often. I spent a lot of time chopping vegetables and washing dishes. And it was expensive. Very expensive.

At the end of the thirty days, I was having fewer mast cell reactions. But my GI tract was really irritated from the additional mechanical stress of eating such high residue food. While my joint and muscle pain seemed better, my GI pain was worse. I had more energy and slept better, but the GI pain and poor motility was worse. A few weeks later, I got a PICC line in a last ditch attempt to keep my GI tract moving.

I continued to eat mostly low histamine. I drink a can of soda every day. I added back in some foods that are not low histamine but which I reliably tolerate, like potatoes and limes. I cheated sometimes. But most of the time, I stuck to the low histamine diet.

The concept of curing your disease with food is not new. Fad diets have been based around this concept for many years. I think I notice it more now because “curing yourself with nutrition” talk is abundant in the places I have to peruse to find low histamine recipes. I disagree with a lot of it. And to be honest, I think a good chunk of it is really damaging and hurtful.

I believe that it is possible to feel better by changing your diet. I think dietary and lifestyle changes are really important tools in managing chronic disease. But that is not the same as curing yourself. If you have mast cell disease and you eliminate your food triggers and see a huge reduction in symptoms, you still have mast cell disease. If you eliminate your food triggers and no longer have symptoms, you still have mast cell disease. If you stop adhering to the diet, your symptoms will return. You cannot cure mast cell disease with diet (or anything else, for that matter.) You cannot. There is no cure for mast cell disease. Or for many other chronic diseases.

An article popped up in my Newsfeed a few days ago about someone who “just decided I wouldn’t be sick anymore, so I healed myself.” Stuff like this is so hard for me to read. It implies that those of us who can’t just heal themselves are deficient in mental fortitude or discipline. It implies that these people who “cured themselves” are better than us in some way, that the rest of us aren’t trying hard enough to get better.

I decided a long time I didn’t want to be sick anymore. I have tried so many things to manage my symptoms. I have tried things I am embarrassed to admit I have tried. If it were possible to cure myself of mast cell disease (and autoimmune disease and Ehlers Danlos and so on), I would have done it by now. Instead of having a magnificent recovery through healthy eating, I need to surgically remove the pieces that are damaged beyond repair and cut my losses.

I have more severe food reactions now than I used to, possibly because I am no longer desensitized to them. After an initial period of fewer reactions, they returned with a vengeance, stronger and more frequent. It’s hard to whether the source of my reactions is more internal or external. But I know with certainty that the low histamine diet did not cure me. And I know it never will.

 

 

9 Responses

  1. Erin M January 13, 2015 / 2:42 am

    Thank you for this, when I first started this journey the first thing I did was eliminate nearly everything, then added things in.
    The only thing I found was some days I react to potatoes and somedays not.
    Sometimes I can tolerate the produce section at the grocery store and sometimes not.
    There is no rhyme or reason for this illness.

    I am all for having a positive attitude, I truly believe that helps but I am not a failure because my body sometimes works against me no matter what I do.

    • Patrick Jordan May 24, 2016 / 5:36 am

      Hi Kate,

      When I began proper anaerobic fermentation of food I was able to eat a pound of cooked white potatoes per meal when I previously could not tolerate a single bit without the solanine causing horrific arthritis in the past. Improper fermentation can lead to histamine formation within the process so you really have to know what you are doing. The cycle of sometimes getting ill sometimes not appears to me to be an immune cell cycle that can have a frequency of up to three days. If you journal you can start to pick up patterns.

  2. Katie January 13, 2015 / 10:23 am

    I appreciate this post. Diet and trigger avoidance is usually very important for symptom management, but it isn’t a “cure” and not many people can return to a normal life with diet alone. For years my mother kept focusing on organic and natural foods as an answer, but my poor tolerance of salicylates, fodmaps, citric acid, and other plant based components has made for a very frustrating experience. Like I’ve told her- maybe pesticides or something “unnatural” triggered this cell mutation or other issue, but the pathology is there now 🙁

    • Patrick Jordan May 24, 2016 / 5:45 am

      Hi Katie,

      What NO ONE is talking about is that people are now complaining of reactions to:
      Phenols
      salicylates (are phenols)
      histamine
      oxalates
      sulfur
      gluten (lectins)
      but THESE ARE WHAT FOOD IS MADE OF! Folks are basically saying that they are allergic to Life. This can’t be without a root cause. As you say: forced genetic mutation is that cause. Additionally things that are below the threshold of our knowledge can also contribute. Please let us know if you are saying that citric acid in its natural occurrence is giving your trouble or if it is the stuff that is added to prepared food because citric acid is often from GMO fungus in industrial processes.

  3. Michele Palley January 13, 2015 / 8:10 pm

    Hi Lisa. I just want to thank you for your knowledge and the fact that you are never misleading. I love that about you. We are all so fortunate to have you in the Mast Cell community minus the fact that you too are suffering. I hope things improve for you. I too would love to believe that food can help or cure us and I try my hardest to avoid trigger foods, the thing is, I still react. I can’t completely avoid heat, friction, stress, digestion, etc., and life that are already big triggers and I’m sure I could eat better for a slight less reaction but it’s frustrating because we are all so different and even foods we usually tolerate can turn on us. It’s a crazy disease that’s for sure, and I do hope and pray for possible cure or great option for treatment,. However, we all have to remember when giving and receiving advice (I don’t apply this to you because you know your stuff) – just our lives alone (high stress, low stress, where we live, environment, etc) can alter how “well” we are, without food even in the equation. Do you know if there is a difference too in degree of illness based on it being a MCAD/MCAS as apposed to ISM? Also, those with ASM…can they bring it back to an Indolent level? I’m hoping it’s true that Aggressive is truly rare and we don’t have to worry about Indolent progressing to it since from what I understand once you are aggressive your life expectancy changes to only a few years. Is that true?
    Sorry for all my questions. I like to try to know as much as I can about my illness and it’s so hard to find someone who knows what they are talking about. If you are too busy and feeling too bad no worries on responding…I totally understand.

    • Lisa Klimas January 13, 2015 / 8:13 pm

      I’m happy to answer questions anytime, no worries on that. There is a lot here, so I’m going to do a full post on this. I’ll explain the disease severity, progression, aggressive markers, and so on. This is something I get asked about a lot.

  4. Cate August 15, 2015 / 6:31 pm

    Thank you, I appreciate you making this clear : that eating the right diet will not cure us.
    I always feel like a failure ! I have done everything and continue to make whatever adjustments I can but yes, I am still SICK and it is an invisible illness so not apparent to anyone. Now 19 years, 6 months ! When I read that someone just decided not to be sick anymore and is happy and healthy with this disease, it feels like I am the only one who can’t make it happen, am I hated by the Universe, by God, by Life? I feel so alone and abandoned. Right now I do feel better and eat a strict diet but I am not even 50 % functional of people in my age group who are healthy. I need to accept it but I cannot.
    I am so grateful to you for your honesty about this condition. I do want to give credit to Dr. Theoharides for his research and for his supplements……. Both NeuroProtek and FibroProtek have helped me alot. I hope they will help others also.

    • Patrick Jordan May 24, 2016 / 5:59 am

      Hi Cate,

      One of my maxims is:
      If you are not looking for something – you won’t find it…
      There are no ‘invisible illnesses’ only ones that mainstream medicine is covering up so that they can make money sending people to psychologists and psychiatrists because they have the lowest marketshare of western physicians.
      They broke our genes and then blame us for being ill.
      There is no God, but 80% the Universe and Life (according to Carl Zimmer) is made up of parasites so ‘Life’ is out to get us any way it can. I admire everyone here for not taking NO for an answer and working every angle to get well. You can’t ‘think’ yourself well. That is just hypnosis. Even Candace Pert rejected those myths. Gene repair is the only reasonable pursuit while we keep ourselves going via palliative measures.

  5. Patrick Jordan May 24, 2016 / 5:28 am

    Hi Lisa,

    Have you considered drinking just pure carbonated water instead of a commercial soft drink? An alkalizing agent like carbonated water one hour or more AFTER a meal aids digestion instead of interfering with it if taken at the same time as the meal.

    I only just started to view your website, so I am not aware if you have studied the work of Carl Pfieffer (Mental and Elemental Nutrients) and his position on modifying histamine via zinc, calcium and other means.

    Regarding those who promote the insanity that modifying the physical universe with happy thoughts: I am now thinking of a 16-pound sledge hammer to their heads….

    cheers.

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