Enough already!

I love all the comments (well, nearly all!) I receive through my blog, which has now had nearly 50,000 hits in its first 8 months – a statistic which truly blows me away.  I though Ehlers-Danlos Syndrome and Mast Cell Disease were so rare I’d be lucky if I got 50 visits, let alone 50,000!  It helps to know I’m not alone in my struggles and that other people have similar symptoms to me.

I’ve discovered through the site statistics that most of the people visiting my blog are searching for information on low histamine diets, and my blog does cover this area.  But my blog isn’t about histamine intolerance, because I don’t have histamine intolerance.  I have Mast Cell Activation Disorder – there’s a big, big, difference (see the Resources page for links to information on MCAD).  I also have Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis (M.E.) and Dysautonomia.

Lots of people try in vain to convince me that all my symptoms are due to gluten and that if only I’d stop eating gluten I’d be a new woman.  God how I wish this were true!  I’m also frequently told my symptoms fit the bill for Coeliac disease, despite the fact I’ve mentioned several times that I have tested negative for Coeliac on both stomach biopsy and blood tests.   One of my closest friends has Coeliac disease and trust me when I say if I had it, I’d know about it.  She has a blood test for gluten twice yearly.  She has to follow a very strict gluten free diet.  Her kitchen is split down the middle – her husband has one side and she has the other. They have separate toasters and use separate cooking pans and utensils.  Despite this, one of her blood tests last year was positive for gluten.  Turns out she unwittingly ate a minute quantity of gluten in a bag of grated cheese while visiting her parents and 3 months later it was still showing in her blood.  Coeliac disease is not gluten intolerance folks and definitely shows up on testing.

You have all worn me down, though, on the subject of gluten intolerance.  I’ve tried a gluten-free diet twice before in my life and it didn’t alter a single one of my symptoms.  However, as many of you are so convinced it will change my life I am currently giving it a go.  I will be gluten-free for the next 6 weeks and will report back on my progress.  I went dairy free for 2 months last year and it made not one jot of difference to my health, so before anyone tells me I need to be both gluten and dairy free, you have to trust me when I say I’ve been there, done that and the t-shirt didn’t fit!

As well as MCAD, I also have Ehlers-Danlos Syndrome, which is caused by faulty genes.  There is no cure and nothing I eat is going to make my collagen less stretchy.  Please, when you’re telling me of the latest diet which cured you bare in mind I have EDS and you don’t.

I have also had M.E. for 20 years now.  I may be new to mast cell disease and histamine, but I’m a very old hand at illnesses about which little is known in the medical profession.  In the early days I was bombarded with advice on how to get well.  Lots of people told me they were cured by following an anti-candida diet, which means they didn’t actually have M.E., they had candida which shares some symptoms with M.E..  Other people told me they were cured by a dairy-free diet, which means they didn’t have M.E. but a casein allergy or intolerance.  Yet others have been cured by a gluten free diet (bloody hell it’s a great diet this, cures everything!!), which means they didn’t have M.E. but a gluten allergy or intolerance.  Then there are those cured by thyroid medications, who didn’t have M.E. either but undiagnosed thyroid disease which shares some symptoms with M.E..

When I was naïve, and desperate for a cure, I tried everything everyone suggested.  Every diet, every exercise regime, every drug, every supplement (B12, bee propolis, aloe vera, l-carnitine, glutamine, fish oils, B vitamins, high dose vitamin C, manuka honey, probiotics, raw olive oil, and about 100 other things I can’t even remember the name of), osteopathy, chiropracty (which is contraindicated in EDS, no wonder it made me bedridden for 3 months!), lymphatic drainage and just about everything else.  All any of it did was make me skint, not better.  This is because M.E. is a complex neuro-immune disease with no current cure or effective treatments.

I’ve made a degree of recovery as I’ve learned to live within my limitations, but I’m still as sick as a dog.  Anyone who writes to tell me that they can cure my M.E. through diet needs to inform the government, because they’d win the Nobel Prize being as though scientists the world over can’t find a solution.  Two young women who were members of the charity of which I’m a board member have died as a direct result of having M.E. in recent years (it’s listed as the cause of death on their death certificates).  One was being tube fed so not eating anything, let alone gluten.  Jen Brea is currently making a documentary on what it’s like to live with M.E. which, when it’s finished, I hope expels many of the myths surrounding this horrendous disease.

All I’m trying to say with this post is that I do, truly from my heart, appreciate all your concern for my health and all your suggestions on things you think might help.  But please, bear in mind I have diseases most of you don’t, one (and possibly more) of which are genetic in origin and can’t possibly be cured by diet.  I will be ill until the day I die and the best I can hope for is to eliminate any symptoms which possibly can be eliminated (hives, reflux, itching etc.) and manage the other symptoms as best I can.

The comments telling me that going gluten free will cure me actually make me quite upset if I’m honest as they imply if only I tried that little bit harder I’d be well.  You have no idea what I’ve been through in the last 20 years or how hard I’ve fought and tried everything to improve my health.  A particular diet might have cured your symptoms, but unless you have all 4 of the diseases from which I suffer and know something that the best neurologists, immunologists and rheumatologists in the world don’t, then we’re not really on the same page.  Saying all that, I hope from the bottom of my heart that my current gluten-free diet will help some of my symptoms and I will be the first person to eat humble pie if it does – just so long as it’s low histamine humble pie 😉

I started my gluten-free journey a week ago by baking a gluten-free, yeast-free loaf.  I didn’t hold out much hope that it would even be edible, let alone half decent, so was pleasantly surprised by the results.  This photo makes it look huge, but it is only a small 1lb loaf, though it did rise well, have a lovely crunchy crust and was incredibly easy to make (recipe on the Recipe Page and scroll down).  I had a slice when it was just out of the oven and still warm and it honestly tasted just like normal bread!  It had gone rather dry the next day but still wasn’t too bad considering the limitations of the ingredients.  Just don’t cut the slices too thick, as they end up very spongy and gloopy tasting.

Photo of gluten-free yeast-free bread

This will be the last post on this topic I will do for some time, because to be honest all the “your diet isn’t gluten free”, “it’s not dairy free”, “it’s not histamine free enough” comments are seriously getting me down.  I find it weird that some stranger with no medical or nutritional qualifications, who’s never met me, has no access to my 46 year medical history and no access to any of my test results thinks they can diagnose and cure me based on the short items I post on this blog.  Enough already.


8 thoughts on “Enough already!

  1. Sherry

    Good Morning from Canada again :). I just want to take a moment to thank you for your blog. Its a lot work even for the relatively healthy so…I can imagine how crappy you feel while you are responding to comments, creating your own posts, typing in recipes and photos…and sharing so much with us; all the while trying to manage your symptoms and…live. Personally speaking, I can “hear” myself in so much that you write (and even in your humorous and pleasantly sarcastic bits) and am grateful for the knowing that at least one other person on this planet has an authentic understanding of my own world. I too have tried the non-dairy, non-gluten, non-wheat, non-bla bla bla to no avail. And yes, when I took on these “diets” I did them all the way. Other than a reduction in gas (which is very nice), my symptoms were unaffected and, over the years, despite a monitored diet, have significantly worsened. So, like you, knowledge, awareness and well attended moderation (in everything) is what works best for me. Having said that, it can’t hurt (other than being a lot of work, expensive, and requiring undying discipline) to attempt a strict diet again as the body does change (especially when it is bombarded so relentlessly as our’s are). It may be happy for the change. And… I know that folks mean well; and I am one to want to rectify a problem myself… but advice, although primarily coming from a place of good intent, is exhausting on its own when it misses the mark, is too focused or too general, is a road already traveled, is wrong… Having said that, who knows… someone might come along and give us that magic answer. I wish you success. I send you good vibes :). Sherry.
    P.S. Sometimes, all I ever desire from another human being is a bit of validation which, for me, may simply be someone saying “I hear you. I don’t have an answer, but I hear you loud and clear.”


  2. linda

    I hear you loud and clear. My dtg has ehlers-danlos/chiari/ dysautonomia/ MCAD and yes we get all the advice too about the diet, air filters, etc. etc. We just try to make it thru each day without calling 911, some days this means I have to inject epi and benadryl, most days she spends 20 hrs in bed, and has very little to eat and her water has to be filtered and stored in glass. Linda in Fla


    1. bertieandme Post author

      Awww, I’m so sorry to hear that Linda 😦 . I feel like shouting some days “I’ve been ill for 20 yrs, don’t you think I’ve tried *everything*!!!” I know people mean well but OMG you get so sick of hearing it. Big hugs to you xxx



Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.