My Journey, Part 3

Remember how I said that removing the foods on the food panel blood test made me feel better?  Well, that lasted.  For about 3 months. 

And then the symptoms came back again.  Slowly at first, and during the month of December. You know – the time of year where there is food everywhere.  Beautiful food.  Special food.  So delicious food.   

So at first, I didn’t know if I was truly getting worse, or just ‘accidentally’ eating foods on my forbidden list.   

But, my cramping and bloating and dashes to the bathroom were becoming more frequent.  By the time Christmas actually arrived, I was scared to eat anything.  We were spending Christmas at my Mom and Dad’s place – and my mom is a great cook.  No, scratch that – she’s an amazing cook.  She was so worried about making me sick, but I simply had too many forbidden foods for her to remember.   

And, on top of that, we were flying to go visit them.   

Now, I should mention that the symptoms weren’t really, really bad here.  I just felt tired, with weird bowel movements, lots of bloating and cramping.  Weird enough for me not to trust being on a plane without a good dose of pepto bismol to keep any surprise diarrhea under control.   

In January, I tried to talk rationally to myself.  I hate always feeling yukky.  I’m a ‘suck it up, buttercup’ kind of gal.  I’m not THAT sick, right?  So I started a ‘feeling’ diary – where I just wrote down the date, and a short comment on how the day went.  ‘Good’ if I had a good day, HLHS if I had a headache on my left hand side, BMx4, runny (4 bowel movements, runny), that sort of thing.  At the end of the month I looked back:  There was only one day where the entry said ‘Good’.   

I can’t live like this.  What to do? 

I tried my Doctor again: I just got the sad look and an offer to book me in for allergy testing.  I was pretty sure I didn’t have allergies, but put myself on the waiting list. 

I  contacted my naturopath and reviewed my food and symptom diaries.  I confirmed that I was  taking the expensive probiotics.  Yes, I was also taking the right fiber supplements.  Yes, I was (now) avoiding the forbidden foods.  I could tell the naturopath was stumped.  

It turns out that my girlfriend has a naturopath who suggests smelly powders and potions.  Have you ever heard of Slippery Elm and Marshmallow Root?  My friend swears by this combination.  I mentioned this to the naturopath and she said it couldn’t hurt (but she did look doubtful that it would help).  I purchased some at my local supplement store and tried them – I think they are just a ‘natural’ alternative to pepto bismol.  They helped a bit with the diarrhea, but they aren’t as effective as pepto bismol.   

The couple at my local health supplement store recommended a special fiber supplement.  I was desperate enough to buy it.  It ain’t cheap, and  this stuff not only tastes, really, really bad, but it stinks to high heaven.  Do I really need to do all this just to feel ‘normal’? 

And that’s when I got my February/March issue of Living Without.  Inside was an article about researchers at the Monash University in Australia who were studying IBS and investigating something called FODMAPs.  I was encouraged to see that their work was the result of actual research!  Included in the article was a small box, listing common foods to avoid and foods to enjoy.  I ripped it out and stuck it to the refrigerator. 

What the hell, I thought.  Let’s give it a try.  At this point I was desperate – I had a heating pad on my belly every evening trying to calm the pain.  And every morning was spent with repeated trips to the bathroom.  The new diet was worth a try. 

The results were almost immediate.  The bloating went away.  The cramps went away.  And, thanks to the researchers at Monash University, the diarrhea went away too.   

I’ve been following a FODMAP diet for a little while now, but it seems longer – I think because my days are so full – of doing things in the real world!  I’m not continually stuck in the bathroom, or sacked out on the couch with a headache, or walking around painfully with a belly that looks like I’m 8 months pregnant. 

Yes, there have been bumps along the way.  I know that my other attempts at a ‘cure’ only lasted for a little while – so I am a bit nervous that this good thing won’t last.  But I sure will enjoy it while it does! 

My Journey, Part 2

To manage my IBS symptoms, I had about 6 or 7 months living (begrudgingly) happily without milk,  but then the symptoms returned.  Terrible headaches (deep in my eye-sockets) and unpredictable diarrhea.   Bloating, cramping, exhaustion.   

A trip to my Doctor was of not much help.  After I described my symptoms and my test results were reviewed, (remember, the tests show that I am ‘healthy’), the Doctor looked at me sadly and said “unfortunately, we are seeing a lot of this sort of thing.  It’s very common”.   

And that was it!!  Not much of a plan of action, is it? 

I was pretty desperate for some help, and now not really enthused about the medical community (I know: one doctor a whole community does not make). Needless to say I was pretty frantic.  I knew that I couldn’t keep on living with the cramping and the hours of sitting on the toilet, never mind the accidents which were embarrassing and kept me trapped more and more often at home. 

 A good friend of mine had had some success with similar issues after she had seen her naturopath.  I was very reluctant to take this path, as I really didn’t know what naturopaths did. 

I envisioned an ancient and wizened practitioner who tried to sell me a variety of ill-smelling and expensive powders and potions. 

I was very wrong.  My naturopath has had extensive medical training, is young and has really never tried to sell me any ‘potions’.  We both believe that we should get our nutrition from food and not additives. 

What she did do, though, is spend an entire hour going over my history, symptoms, a diary of food that I had been eating along with tracking symptoms, and my medical test results.  It felt so good to be finally heard and taken seriously!   

On her recommendation, I took a basic food panel blood test.  It shows the antibodies (IgE and IgG4) that your body creates when it is struggling to accept various foods.  The way I understand it,  higher antibody levels indicate that your body is REALLY not happy with what it’s dealing with. 

I was floored by the test results.  Dairy, Beef, Green Beans, Kidney Beans and Eggs all scored in the ‘not safe’ zone. 

This took me a while to process.  Firstly, I had thought I had already eliminated dairy from my diet – in which case my body shouldn’t still be fighting it.  My naturopath suggested that I need to be more vigilant in reading ingredient labels.  She was right – I had been missing hidden dairy in a lot of products.   

Beef, I had started to suspect that something was a problem here.  After eating a lovely barbequed steak one evening, I spent the wee hours of the morning curled up in agony on the couch – I could almost feel my gut having difficulty processing the meat. 

Green Beans?  What is up with THAT?  Green beans are  supposed to be GOOD for you. 

Kidney beans?  Never was a fan.  Easy to give these up. 

Eggs?  Well, now.  I may have been willing to eliminate dairy from my diet, but eliminating eggs would be another thing altogether.  I like to bake.  I love fried egg sandwiches.  My go-to fat free dessert is angel food cake.  No, not eggs too. 

As if to prove a point I made an angel food cake that evening.  Enjoyed it tremendously.  And spent the next day in bed.  Yes, yes eggs too. 

My Naturopath also suggested that I take a high quality pro-biotic as well as a fiber supplement, and to diligently track what I eat.   

I was happy I had a plan of action.  And I got results almost immediately –  once I removed the offending foods from my diet I quickly felt better physically (no diarrhea, no headaches).   

Mentally was a different story.  The feeling of loss was pretty strong.  I wanted to talk to someone about this, but I doubted there was a ‘mourning the loss of your favorite foods’ support group out there. 

So I ploughed on, looking for help with books I picked up from the library and searching for information on the internet.  I was pleased and amazed to know that I wasn’t alone.  I still don’t understand how there can be such a large group of unwell people out there, and the medical community or marketplace seems to ignore us entirely.   

Armed with my new sources of information, I was determined to get back to enjoying life again. I was done with being ill! 

Ha!

 

My Journey, Part 1

So where did my IBS adventure start?   

 I started developing symptoms about 2 years ago (it seems much, much longer than that).  At first I thought I had a stomach flu that just wouldn’t go away!!  I was truly miserable.  I soiled my pants.  Running to the bathroom became an awful sporting event.  As you probably know from your own experiences, feelings of anger, sadness and desperation all take turns in your head. 

Then it tweaked on me that dairy might be the problem.  I made this discovery while I was on vacation –  I don’t eat very well on vacation: wine instead of milk, a snack of fries instead of yogurt, you get the gist… 

Once I discovered what was giving me trouble, I had to decide what to do next.  I had many, many worries.  What if there is something really wrong with me?  How can yogurt possibly be bad for me?  How can I live the rest of my life without dairy?  Is that even possible? 

My biggest fear was wondering what could be causing this.  Peoples stomachs just don’t suddenly start disliking certain foods, do they? 

I met with my Doctor, and she assured me that yes, stomachs sometimes suddenly do just that.  She thought it would be a good idea for me to have a couple of tests to make sure there wasn’t something structurally wrong with me, and so a stool sample as well as a colonoscopy with biopsies were arranged.   

Let me be the first to tell you, these are very, very fun tests to take.  If you have any sense of pride and modesty, just take a deep breath and learn to love your wild side. 

 On the bright side, everything came back clean.  I was healthy!!  (insert maniacal laughter here). 

So, all that was left for me to do, was to remove dairy completely from my diet.  This was a pretty big change for me,  and besides being irrationally irritated at the thought of life without cheese I also had a worry about long-term consequences.  My mother has osteoporosis, so cutting dairy out of my diet probably wouldn’t be good for me, right?  

I was feeling pretty low at this point.  It seemed that my life was turning into a life of denial.  Not that I was a big glutton before, but it’s always unpleasant to have options taken away from you.  

My next stop was to a Registered Dietitian.  This was a really positive experience, partly because of a lucky coincidence – she was also lactose intolerant.  She was able to give me lots of pointers:  how to ensure I’m getting enough calcium, how dairy can be disguised on a food label  (who knew there were so many code words for ‘milk’?), and even what sorts of dairy alternatives exist in the grocery store.   

 She wanted me to test for my tolerance for dairy – and I discovered in a rather unpleasant way that just a spoonful of yogurt has nasty consequences for me. 

My Dietitian did suggest trying goats milk cheese –  the protein in goats milk is structurally slightly different than in cows milk.  By now I was terrified of anything dairy, and was reluctant to just give it a try.  I quizzed the folks at my local cheese boutique as well as the cheese stall at my local farmers market.  Once convinced that the two dairy products are in fact quite different I summoned up the courage to try chevre (the word for cheese made from goats milk).  I was thrilled to learn that goats milk is an option for me! 

So, from my Physician I learned I was healthy (ha ha) and from my Registered Dietitian, I learned how to ensure I would get my daily calcium needs met… as well as finding out that my life could go on. 

Once I got dairy out of my diet, I was thrilled to discover side benefits – no more running to the toilet, and (bonus round) no more of those weird  headaches I had been getting for years.

 Yay!

 It was a “cure” (I understood that it wasn’t really a cure) like many others – a cure with a price.  I was pretty angry that I had to give up dairy, and all the foods it hid in.  Chocolate bars will be forever off limits to me.   Here’s my embarrassing confession:  every time I’d see that commercial with happy women saying that my bowel problems would go away if I just ate more yogurt I would go and buy some.  Talk about the power of marketing!!  I’d be too scared to eat it, and always end up throwing it away.  What a terrible waste…

 Yup, a cure with a price.    But I’d take it.