Is it curable?

Someone emailed me recently and asked “is it curable, or am I going to have this for the rest of my life?”.  Well, it depends on which disease we’re talking about, but none of mine are currently curable.  They are manageable, and symptoms will wax and wane over time, but I am sadly stuck with them for the rest of my days.

I thought it might be interesting to go through each of my diseases individually and hopefully clarify what is, and what isn’t, possible in terms of recovery:

M.E.

ME is a tricky disease to discuss because some people absolutely do recover.

Children can have ME very severely, but many go on to make a good degree of recovery.  Children’s immune systems are still immature and behave differently to those of adults.  For example, if an adult contracts Measles they have a much higher risk of death from the virus than do children.  So statistically children have a much greater chance of recovery from M.E. than adults.  Having said all that, I have friends who developed ME in their teenage years and are still severely affected and very ill 2 decades later.  No-one knows why some children recover and others sadly do not.

Some adults with more mild cases of M.E. who have had symptoms for 5 years or under also have a good chance of recovery, although  usually find they never fully go back to their pre-ME self.  But not everyone with short duration and milder symptoms recover and again we have no idea why.

The worst prognosis is for adults with severe M.E., particularly once they’ve had the disease for 5 years or longer.  Chance of full recovery is very remote (there are no statistics available, but the most educated guess is 7% of patients) but there is always hope for improvement.  I’m proof, though I have no idea why I’ve made a degree of recovery and many of my friends have not.

There are lots of claims about recovery in M.E. from this diet, or that supplement, or some other therapy and my opinion is these people didn’t have M.E. in the first place.  I’m not saying they weren’t sick, but they didn’t have what I have.  The fact there is still no diagnostic test available means that many people get diagnosed with M.E. who actually have some other disease entirely.

The answer to whether M.E. is curable is: it’s a possibility for some patients, but no-one knows which patients will recover or why.

Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome

Some time ago I received a comment from a lady via my blog that her husband had recovered from his hypermobility by eating a gluten-free diet.  Got to admit I’m a tad skeptical how a gluten-free diet could possibly affect the hypermobility of a joint though I’ll take the lady’s word for it.  I know for sure diet can’t cure EDS though.

Joint hypermobility is actually quite common and affects about 10% of the general population.  It’s often found in professional dancers, gymnasts and circus performers where it’s seen as an asset and causes no problems whatsoever.  Ehlers-Danlos/Joint Hypermobility Syndrome, on the other hand, causes significant joint pain, weakness and stiffness plus a myriad of issues such as Gastro-intestinal problems, sub-luxations, dislocations, ligament tears and sprains, eye and ear symptoms, chronic fatigue, POTS, menstrual pain, hernias, prolapses, easy bruising, gum and dental problems, skin symptoms and a host of other systemic issues.    The reason diet can’t possibly cure EDS/JHS is that it’s a genetic condition.

Nothing you eat, or don’t eat, affects your genes.  Eating carrots will not turn your blond hair red.  Eating mushrooms will not make you taller.  Eating apples will not turn your brown eyes green.  And nothing you eat will repair your genetically faulty collagen.  Nothing.  End of.

Some things you eat or don’t eat can make some symptoms worse or better, ie eating salt can help with POTS issues, and different types of diet might help IBS and gut motility problems, but nothing you eat will affect the underlying disease.

The answer to whether EDS is curable is: no.

Histamine Intolerance

Most people visit my blog because they think they have either Histamine Intolerance (HIT) or a mast cell problem, but there seems to be much confusion over histamine and its role in allergies and disease.

Histamine is produced when we have allergies, eg. to peanuts.  You come into contact with the peanut, your body produces an IgE antibody reaction which triggers histamine release and you start to itch, sneeze and in some cases go into anaphylactic shock.  Many people visiting my blog actually have allergies they’re not aware of and no amount of eating a low histamine diet is going to cure them.  The only cure for an allergy is either to avoid the allergen, or to have de-sensitization therapy.  If you suspect you have some kind of histamine problem the first thing you must do is have some proper skin prick allergy testing done, by a reputable immunologist or allergist, to rule out allergies.  When I had mine I discovered I had a mild dog allergy (I have a dog!), a strong Birch tree allergy I was totally unaware of, and a Birch-related allergy to apples.  And while these allergies didn’t account for all my symptoms, they explained why I get hay fever between the months of April-June, being as though I live right next door to a Birch forest!

The next thing people visiting my blog get confused over is Histamine Intolerance v Mast Cell Disease.  HIT is caused by a lack of enzymes in the stomach (principally Diamine Oxydase or DAO and histamine N-methyl transferase or HMT) which effectively mop up histamine produced by digestion and the foods we eat.  Most foods contain histamine, just to varying degrees, and histamine is vital for digestion.  Healthy people have enough DAO and HMT to deal with any excess histamine left over from the digestive process.  People with HIT, however, do not.  This causes excess histamine to build up in the body, causing classic allergy-type symptoms.  Of course they’re not allergies, as they don’t involve an IgE antibody response, but symptoms are similar to allergies because they involve histamine.

Diet plays the most important role in managing, and ultimately curing, Histamine Intolerance.  We can stop doing things which deplete DAO and HMT, such as taking certain medications or drinking alcohol.  We can eat foods which are rich in DAO, such as fresh pea shoots.  And we can stop eating foods high in histamine such as tomatoes and seafood.  With a bit of luck and the wind in the right direction our stomachs might just restore a healthy balance and our histamine overload will become a thing of the past.

The answer to whether HIT is curable is: potentially and the cure is diet modification.

Mast Cell Disease

Mast Cell Activation Disorder is a different kettle of fish from Histamine Intolerance entirely.  No-one knows what causes mast cell disease in the general population, but we can make an educated guess about why MCAD is more prevalent in people with Ehlers-Danlos Syndrome.  Mast cells live in connective tissue all over our bodies and in EDS the connective tissue is faulty. It doesn’t have the necessary brake, which results in our collagen being overly active.  For some people with EDS this seems to result in the mast cells living within the connective tissue also becoming faulty and over-active.  Our overly sensitive mast cells then react to a whole host of environmental triggers which they should consider safe and just ignore, releasing histamine (amongst dozens of other chemical mediators) in the process.  Triggers can include foods, drugs, chemicals, changes in hormones, changes in the weather, heat, sunlight, cold, stress, emotions, lack of sleep, viral infections, bacterial infections, trauma, injuries and just about everything else!

When mast cells activate they produce histamine which gives us allergy-type symptoms such as hives, itching and swelling.  But they are not allergies as no IgE antibody response is involved.  This doesn’t mean, however, they are harmless, as mast cell activation can result in anaphylaxis and ultimately death so should always be treated as you would an acute allergic event.

When people have MCAD their bodies are chronically flooded with histamine.  Some days will be worse than others, for example it’s summer and your next door neighbour has just mowed his lawn, you’re having your period, you’ve had an argument with your other half and you had to run like mad in 80 degrees of heat to catch the last bus.  Histamine overload with knobs on.  Then you’re too exhausted to cook when you get home, so heat up some left-over chicken from yesterday for dinner and suddenly your eyes are swelling, your throat is tightening and you are struggling for breath.  Yet last week you’d eaten left-over chicken with no problems whatsoever.  Last week, however, you weren’t menstruating, were all loved up with your other half, it was only 70 degrees and there wasn’t a shed load of grass pollen floating around!

Think of the histamine load in MCAD like a bucket.  Some days your histamine bucket will be fairly empty, and you’ll have few symptoms.  Other days you will encounter every trigger imaginable and your bucket will simply overflow, making your reach for your epi-pen!

Mast cell disease isn’t curable, particularly if it’s caused by Ehlers-Danlos.  As long as our connective tissue remains faulty the mast cells living within our connective tissue will also remain faulty.  It sucks I know.

In most cases, however, symptoms can be managed.  Eating a low histamine diet means there is less histamine entering our bodies from food so our histamine bucket won’t be as full.  We can take medication to dampen down our mast cell response.  And avoiding known triggers, like stress, drugs and chemicals, helps to lessen our histamine burden.  But there are things which are totally beyond our control, like the weather, pollen and our menstrual cycle, and we just have to be aware that certain days or times of year will be problematic for us.

So the answer to whether MCAD is curable is: no, and especially not if it’s caused by Ehlers-Danlos.

At least that’s my understanding of the situation.  I’m aware there are claims online from people who have ‘cured’ their mast cell disease purely through diet and I’m thrilled for them.  None of these people have EDS though and I would be more inclined to assume they had Histamine Intolerance, which I think is potentially curable through diet, rather than mast cell disease.  But then I’m no Doctor so I could be wrong – I often am 😉

 

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2 thoughts on “Is it curable?

  1. chrissy

    Superb post. I’m sure I am leaning more towards mcad, but with no one to give me a definitive answer it’s more self diagnosis. I cannot afford hundreds to go private and get maybe it is answer, when the treatment ultimately is what I am on. H1 anti histamine for hives, H2 for acid reflux. I’m hoping my gp will give me the sc to try and calm my gut down and constant hives. Low histamine diet is helping a little, but I don’t get massive reaction to food. It is a constant ongoing pain, gerd and hives daily.

    Liked by 1 person

    Reply

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