Not all diseases are born equal

A couple of people have asked me why I was upset that EDS UK allowed the Low Histamine Chef to write an article in their charity magazine – after all, the Chef has MCAD and so do an estimated 1 in 10 EDS sufferers, so what’s my issue?

Not all diseases are created equal.  Let’s look at Diabetes for example.  There are two types: type 1 diabetes and type 2 diabetes.  In type 1, the pancreas doesn’t produce any insulin.  Type 1 diabetes usually appears in childhood and often runs in families which indicates there is probably a genetic component.  There is no cure and sufferers will need insulin for the rest of their lives.

In type 2 diabetes the pancreas doesn’t produce enough insulin, or the cells in the body don’t respond properly to the insulin produced.  It usually doesn’t appear until adulthood and is mainly due to lifestyle choices, eg an unhealthy diet, obesity and lack of exercise.  While there is no cure, changing your lifestyle can stabilize symptoms and initially sufferers may need no extra treatment other than this.

Which leads me on to MCAD.  An estimated 1 in 2000 of the general population develop MCAD in adulthood, whereas 1 in 10 of the EDS population have MCAD with symptoms often appearing in childhood.  Obviously there is something about having EDS that interferes with mast cells in a way which isn’t seen in other forms of mast cell disease.  Just like diabetes, there is a suspected genetic link to the type of MCAD seen in EDS patients which is usually absent from MCAD in the general population.  With different reasons for the mast cells misbehaving, EDS-related MCAD and general MCAD are going to need different treatments.

I’m delighted that the Low Histamine Chef has stabilized her MCAD through diet and meditation, but just like altering lifestyle won’t work in type 1 diabetes I’m unsure this approach will work for EDS-related MCAD, where the mast cells are faulty due to a genetic disease.  Yes, you can help symptoms by eating a low histamine diet, staying away from your triggers and taking medication (just like a type 1 diabetic can help their symptoms by not eating a diet which demands high levels of insulin), but it’s not going to cure you because diet and lifestyle aren’t the cause of MCAD in EDS.  However, altering diet and lifestyle in the general MCAD population might be all that’s needed to control symptoms to the point where they’re barely noticeable, just like altering diet and lifestyle might be all that’s needed to control symptoms in type 2 diabetes.

At least that’s my understanding, however I could be wrong – I often am 😉

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11 thoughts on “Not all diseases are born equal

  1. chrissy

    I fully understand what you are saying. You have a triple whammy and it is so so much more complicated, At present I have been gluten free for 4 months and low histamine for 3 and to be honest have not noticed any improvement. Whether it will or not I don’t know. My gp just says stress. But I haven’t been stressed for over 20 years with symptoms gradually getting worse!! What a bloody minefield and still walking through it. You have my total sympathy and admiration for how you get through each day. It is hard, so hard and I don’t have anywhere your huge list of problems.

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  2. glo

    The low histamine chef needs to remember that everybody’s triggers are different. Mine can be different from day to day. No matter what combination of misunderstood diseases you have the thing to remember is we all respond differently dependent on disease etc. We are not one size fits all.

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  3. kneillbc

    Jak, you and I are usually on the same page, but I think I might see this one differently. I agree that not all diseases are created equal…but that doesn’t mean that one is ‘less’ or ‘worse’ or ’causes more suffering’. I think the moment we try to compair our illness to another person’s, we are trying to be the best at being sick. Every time I catch myself saying ‘That’s all well and good, but at least you can……’, I nip it in the bud. It’s a recipe for unhappiness. Every person’s suffering is unique, what causes one person mild discomfort can cause another to go into shock from the pain. I’ve found that not comparing my illness to other’s (except from a medical standpoint) is much healthier for me.
    If I were to get type II diabetes right now, would my illness be ‘less’ because I have supposedly ’caused it’ (I am severely overweight, and I eat a diet seemingly designed to cause diabetes- refined sugar, white flour and milk)? No. It does not make my illness ‘less valid’. In fact,
    I see a large number of people with MCAS are significantly overweight. It might be due to the fact that mast cells release leutiolin (I hope
    I spelled that correctly), which has been called the ‘obesity hormone’, for it’s propensity to induce obesity in mice, seemingly overnight. An illness isn’t worse or better if you’ve had it your whole life, or if you have developed it as an adult. Aggressive Systemic Mastocytosis almost always develops spontaneously, as an adult. And it’s definitely ‘more severe’ than MCAS.
    Someone’s cancer is no less dangerous, and they are no less deserving of our sympathy and care, if it was caused by asbestos at work, or cigarette smoking at home.
    But, I could be wrong, as I often am 😜

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    1. Jak Post author

      Hi Karen

      I agree with everything you’ve said. You’ll have to point out where in the post I said that one disease was “less” than another?

      I said that different types of mast cell disease have different causes and treatments. That diabetes has different causes and treatments. Nowhere did I say that one type of illness is worse than the other as far as I’m aware?

      Jak x

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  4. Kathy

    Well, “not all diseases are born equal” implies one is worse than the other.

    Hey, just last night my husband and I were discussing my low-histamine diet. So far, I’ve resisted buying yet ANOTHER cookbook, but think I might. I also have Celiac Disease, so wind up adapting recipes. I’m really tired of my tried-and-true meals, and need to shake it up a bit. Hopefully, her recipes will give me a bit more flavor.

    So far, I’ve only been diagnosed with MCAD (and Celiac), with bouts of anaphylaxis as my main symptom. I’ve been following a gluten-free-low-histamine diet for about 2 years. I’m still shocking from time to time. Usually I can point to a food as a trigger, sometimes stress. In my case, the diet isn’t a cure-all. I’m in a study at the National Institutes of Health in the USA that is testing a drug (omalizumab) as a mast cell stabilizer. The initial test results from patients in the study indicate high efficacy! Yay! Which leads me to believe I’m on the placebo, since my symptoms haven’t changed much in the 3 months I’ve been receiving the injections. Oh, well, somebody has to be in that group, and it might as well be me. If I am on the actual drug, I will be in BIG trouble when I enter the phase of the study where they take me off it to see what happens. 😉 Hang in there, everybody!

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    1. Jak Post author

      After writing over 300 blog posts, and suffering from severe brain fog it’s hard to come up with post titles that I haven’t already used. It certainly wasn’t my intention to suggest that one disease is any worse or better than another and if that’s all anyone took from the article it makes me sad.

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  5. d

    Hi Jak

    I agree with your sentiment about the difference in the sub-type of diseases. It seems to me that the Low Histamine Chef is dealing with straight MCAD, which as you have said is different than dealing with MCAD and EDS. If there is one thing I have noted in my time spent researching histamine and MCAD, it’s that everyone is different. I have a couple of the Low Histamine Chef cookbooks, bought early on in this process, and I can’t use most of the recipes. This is because I am intolerant to sulphites, histamine and salicylates. Either there are not as much sulphites used in foods in the UK as there are here or she is not as sensitive as I am. She also tolerates some foods that are on the histamine list e.g lentils that I absolutely do not. The end result is my “path” to wellness is different that hers. I think others can provide general information to help people find their own path, but they should absolutely refrain from marketing themselves as having the answer. This is one of the things I like about your blog. You are very clear that this is your path. Some of the things you have done I have also found helpful and I am grateful for the information. Other things do not, mostly in the realm of food, but that’s ok. I think the hardest thing to deal with when you are first trying to sort out this whole complicated mess, is this exact thing – there is no one way to get better or, as you have so bravely shared with us, a path to permanent wellness for every person. It’s great that the Low Histamine Chef has found her path but it bothers me that she comes across as an expert. She has amassed knowledge about low histamine foods and she is an expert in her own health. That she feels great on a consistent basis is great for her. It does nothing to help me feel less alone when I am going through a bad patch. To my mind, your stories about your struggles to me represent what the real world of chronic illness is like. I have found this to be a huge piece in my own path to trying to make peace with it and make a new life that I find fulfilling even though it’s not what I had planned.

    Thanks Jak,
    d

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    1. Jak Post author

      d, I’m having a really bad few days as I’m waiting for The Curse to arrive and your comment brought such calm this morning. So thank *you* very much for taking the time to write it 🙂

      I’m not into knocking *anyone’s* path. To be fair I don’t care what anyone else is doing – I barely have the energy to concentrate on my own life, let alone anyone elses. I think sometimes it may come across that I’m bashing the Low Histamine Chef when nothing could be further from the truth. I’m delighted she’s found a way to improve her health and wish it were that easy for all of us. But as you so eloquently stated we are all different and my path, and her path, and your path are not the same. Like you, I struggle with the fact she has set herself up as an expert with ‘the cure’ for MCAD. As you say, she is an expert in her *own* health, not mine or yours. I’ve also been very open about my dislike of the fact she makes money out of very desperate, ill people and I do question what happens to objectivity in that situation.

      When you’ve found something which helps you it’s natural to be really enthusiastic about it and to want to share it with others in the hopes of helping them to. I applaud her for that, while having concerns about some of her methods and the things she says, in particular treating MCAD like it’s one disease with one cause when it clearly isn’t.

      Jak x

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      1. d

        I completely agree – as Dr. Lawrence Afrin said in the paper you linked to in another post, it is very likely that there is a huge variety of MCAD type diseases, we just don’t yet know what they are. What we know so far is only the tip of the iceberg.

        Hope you are feeling better soon.
        d

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  6. Jodi Owen

    I feel the same about the LHC except I flat out don’t respect her approach. She presents nutritional advice as ‘fact’ and is self-aggrandizing whilst being dismissive and condescending about other treatment hypotheses. I unfortunately bought 3 of her cookbooks early on and couldn’t tolerate anything. Didn’t know at the time that my MCAD is complicated by 1) autoantibodies; 2) problems with my methylation pathway which causes a sensitivity to sulphur, 3) sensitivity to salicylate and lectins and of course, biogenic amines. I felt so desperate to feel better as she claimed, I bought into her faith healing hook, line and sinker. It’s as you say, though we share similar symptoms, the causes can vary wildly.

    I also think it’s bad form to charge exorbitant consultation fees (more than some post-grad therapists charge!) and make money off the desperation of chronically ill people. Especially when her ‘expert opinion’ is based on her research and understanding of her own experience.

    You’re absolutely spot on, there isn’t a one-size-fits-all approach to treating the multitude of mast cell related conditions. I say, shame on her for promoting herself as an expert and giving desperate people (or is that just me??) false hope for a nice cushy fee. Don’t even get me started on her dismissive attitudes about medication! To me, it’s like modern-day snake oil wrapped up in water chestnut flatbread with a chaser of green juice.

    That said, she’s a great researcher.

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    1. Jak Post author

      Jodi, you’ve said everything I’m too cowardly to say and I secretly agree with all of it. Over the years I’ve seen people like this come and go in the ME world – making a fortune out of telling sufferers they’ve found the ‘cure’ for ME when there is no such thing. It used to rile me no end, but I guess I’m just more chilled now and accept that these people will always be around and sufferers are so desperate for help they will try anything to get well.

      People like this are the reason I’m so careful to state on my blog that this is *my* journey, no-one elses. If my readers want to try the things that I’ve found useful I hope they help, but I have no answers and I’m just as sick now as I was 2 years ago when I started the blog, just in different ways.

      Having said all that, I’m just about as disallusioned with EDS UK as I am with LHC! If they post one more “I am having a wonderful life despite chronic daily pain, disability, a feeding tube and a colostomy bag” article I swear I’m going to lose it :-/

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