Eating Cake Keeps Me Skinny

Living with Congenital Sucrose Isomaltose Deficiency (CSID)

Don't eat the cake, I tell myself. I'm new here. I don't know these people yet. A new job in a new workplace, with a new manager I need to impress.

It's somebody's birthday and I need to fit in. Everyone is having cake, are you having cake? Who doesn't like cake?

I eat the cake. I enjoy the cake, but unfortunately, my digestive system doesn't. I wonder if anyone notices how long I spend on the toilet, in a cubicle of solitude, living with the consequences of my food choices.

I may be a little obsessed with generating obscure AI art. Enjoy this delicious cake in front of a dilapidated house.

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Is This Normal?

This has been my life, but I didn't know the cause of my frequent toilet habits until my mid-20s.

• I eat whatever I want, when I want and I barely exercise, yet I'm so incredibly skinny. It must be my genes.

• I always spend a long time on the toilet or feel the need to go urgently, but doesn't everybody?

• I get cramps and bloating sometimes, so painful I can't lie down or stand still. Something mustn't have sat right with me that day.

• I go for a short walk, my head spins, I can't see straight, my heart is beating fast and I can't catch a breath. Wow, I must be unfit.

• My mind is a fog of confusion, I can't concentrate or pay attention and my mind can't focus. Perhaps I need more water.

• My fingertips and toes tingle like pins and needles as I sit at my work desk, okay, that's weird, something's not right.

The Turning Point

I felt silly running through these symptoms with my doctor assuming she would just say 'That's just normal' or 'You just have anxiety' but instead she said 'Let's run some tests'.

It was the first blood test I had in my life. Little did I know they would become a permanent fixture of my future. When I returned to the doctor to get my results, I didn't know what to expect.

Closer to a Diagnosis

My body was severely depleted of vital vitamins I needed to function. Vitamin D, B12, and Iron. I was 24. But this wasn't a diagnosis. It was a symptom I needed a diagnosis for and a fix.

That day I took my first multivitamin, which I soon learned to take daily and will take daily for the rest of my life. But what was the cause? My doctor initially put it down to IBS but thought more tests were needed to be sure.

I was booked in for a colonoscopy and endoscopy at the hospital that included a biopsy and disaccharides test. 24 hours before, the entire contents of my stomach needed to be flushed out with a strict diet of super sweet medical liquid chugged down the gurgler at lightning speed in regular intervals. It was a very unpleasant experience I would not want to do again, but for the first time ever, it was as if my stomach was free of its poison.

The Search for Answers

I go back for my checkup. They found something in the disaccharides test. My doctor handed me a piece of paper with words and numbers that made no sense to me yet. A piece of paper I have kept and taken with me to every medical appointment since to help other health professionals understand what is wrong with me.

The worn and yellowing test results paper now resides in digital form on my phone in a folder labeled ‘important’

The paper showed a bunch of different enzymes. The enzymes I needed to digest and get nutrients from lactose (dairy), sucrose (sugar) and starch were severely depleted. Each one needed to be within a certain range to function properly and their function was to break down and digest the food I was eating and turn it into nutrients for my body.

But wait, is that all the food groups? Well yeah, pretty much, except for meat, oil, fat and eggs. Turns out these were the few foods my stomach could actually stomach properly. So as you can imagine, knowing what to eat became extremely difficult. Think of a paleo diet with half the vegetables and fruits.

But why do I have this? What caused this? Was I born with this? My doctor had no answers and I still have unanswered questions today.

My doctor hadn’t seen this before. She told me to stop or limit eating foods that fall into the food groups impacted by these enzymes, said ‘I’m Sorry’ and ‘Good Luck’.

I walked out and cried in my car.

Then I Googled. The piece of paper I had talked about disaccharide deficiencies. I looked up the specific deficiencies I had and found CSID (it could also be known as a pan disaccharidase deficiency). It matched the information on the sheet of paper I had and my symptoms.

Navigating Dietary Challenges

So I can't digest sucrose? Just stop eating cakes, biscuits, and sweets. Oh, but sucrose is also in a lot of fruit.

So I can't digest starch? Stop eating bread, rice, and pasta. Oh wait, and all those starchy vegetables too. Gluten-free? Nope, that's still starch.

My only saving grace is that the enzymes are depleted, not gone. That means I can digest these foods in small quantities, but how much is too much? It’s hard for me to give the right balance to this day.

And eating out in public? A disaster. Dietary requirements? I don't bother and hope for the best.

At the peak of my digestive issues, work colleagues and acquaintances would always comment on how skinny I was as if it were a badge of honour. I would get comments like, ‘You must work hard to stay that skinny’. ‘You are so lucky to be naturally slim’. ‘You can eat whatever you want and won't put on weight?!’.

Little did they know that with every bite I ate, I was starving myself of vital nutrients. I was and still am underweight. My weight is not a pedestal to aim towards. It is not normal. It is abnormal. It is not desirable. It is a cautionary tale.

My skinny self on holiday in Europe a few months before my diagnosis.

Managing the Unmanageable

It has been a roller coaster journey over the years figuring out how to manage these deficiencies. I’ve been to multiple doctors and dieticians. I had to teach them more than they could teach me. So I gave up on health professionals and continued my journey of learning how to navigate this digestive conundrum on my own. Through CSID websites, blogs, and Facebook groups, I continue to learn how to manage the unmanageable.

I soon found Lacteeze tablets that I can take to help me digest lactose in the dairy I eat. This was a game-changer. Lactose was my biggest demon. I still can't eat too much dairy, but in small to moderate amounts, these tablets seem to help.

I found out that in the USA, people like me can also get something similar to help digest sucrose and foods with sugar. It’s called Sucraid. Unfortunately, it's not available in Australia.

I also found some tablets called Starchaway that have enzymes similar to the ones I need to help with the digestion of all three - lactose, sucrose, and starch. Thankfully they help too. I save these for when I eat out or for a special meal.

Progress and Advocacy

So progress is being made, I no longer have any issues with my vitamins although I get them checked regularly and always take my supplements. I still eat from all food groups. I try eating a variety of foods, pair them with fats and oils that aid my digestion, and take my enzyme tablets. And I’m still skinny too, but not as deathly slim as I once was.

You certainly can have too much of a good thing. In my case anyway.

I at least know now what is wrong with me. I have answers that are helping me fix the cause of my digestive issues, but so many people out there with similar symptoms are missing out on a diagnosis and being lumped into the IBS or even worse, the anxiety basket. My thoughts turn to

Mary Roblyn

and her recent post ‘Darling Be Home Soon’ where she spoke about her IBS struggles as part of her heartfelt piece reflecting on life with her late husband.

There are many possible causes for digestive issues, but if something doesn't feel right, advocate for your health and well-being. If a FODMAPS diet isn’t giving you the answers you need and feeding the flame of your anxiety, keep pushing for answers. It was impossible to manage the digestive issues I have with a FODMAPS diet. I know from experience. It’s like throwing a pancake at a wall in the dark and trying to see how much sticks. The blood test paired with the disaccharides test allowed me to turn on the light.

But this is my tummy troubles story. If you have similar issues, your path and outcome could be very different, and I genuinely hope you find the help you need!

So please do go and eat a slice of cake for me. Enjoy it, and perhaps I'll eat some with you, but just point me to the nearest bathroom, just in case! 🤣😅

More yummy AI-generated cake. What’s that fruit on top? I couldn’t tell you. Looks like a hybrid between strawberries and raspberries to me.

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