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Coeliac disease and lactose intolerance

One of the earliest memories I have of problems with my gut was from when I was about 13. I started getting stomach ache and feeling sick after breakfast. My typical breakfast was Coco Pops and milk, followed by a slice of toast with nutella (I know, very healthy, right? 😉 ). After a couple of years, I had concluded that my body was having trouble digesting milk.

Back then, there were no substitutes like Lactofree milk, so I could either drink soy milk (yuck!) or just suffer. I did a lot of sport at school, and so during break time I used to stuff my face with milk and biscuits just to keep me going through the school day.

As I entered my 20s, I started to take more notice of what my body was telling me – and along with milk, I had added soy to my mental list of intolerances. I started drinking Lactofree milk, which alleviated some of my suffering, but then foods with only a minimal amount of lactose (such as hard cheese) were also causing problems. It never occurred to me that gluten would be the culprit.

After being diagnosed as a coeliac, my dietician told me that true lactose intolerance is actually far more rare than coeliac disease, but CD is vastly underdiagnosed. But does that mean my lactose reactions were really reactions to gluten?

Not necessarily. A surprising side-effect of my gluten-free diet is that my lactose intolerance is getting better and after 4 months of no gluten, has practically disappeared! As it turns out, coeliac disease can actually CAUSE lactose intolerance!

(From Wikipedia) “Pathological lactose intolerance can be caused by coeliac disease, which damages the villi in the small intestine that produce lactase. This lactose intolerance is temporary. Lactose intolerance associated with coeliac disease ceases after the patient has been on a gluten-free diet long enough for the villi to recover” (BMJ Textbook of Gastroenterology, Chapter 11, Celiac Disease, Dr.Jamie Gregor & Dr. Diamond Sherin Alidina).

I wonder how many coeliacs are living their lives thinking they are lactose intolerant?* My guess is that if everyone who went to their doctor (who dismissed the symptoms as “IBS”) was immediately tested for coeliac disease, a greater quality of life could be achieved for many of those who suffer with gastrointestinal problems.

*(Or indeed, how many who have been diagnosed with IBS who are actually lactose intolerant?)

About Yo Samdy Sam

Sam is an autistic advocate, renewable energy and EV enthusiast, mother to a toddler, living in the Netherlands but originally British. She makes YouTube videos as Yo Samdy Sam. Tip Jar ---> https://ko-fi.com/yosamdysam


2 thoughts on “Coeliac disease and lactose intolerance

  1. Surprised by that dietitian – lactose intolerance is far more common than coeliac, but maybe she meant absolute lactose intolerance (no lactase production at all). New guidelines now state that IBS diagnoses can’t be made without first excluding coeliac, so hopefully things should improve for those out there still suffering. Glad your own LI is improving!

    Posted by Alex G | July 27, 2011, 10:34 pm
    • Yeah, she said “true lactose intolerance”, which I suppose rules out most of the people who experience symptoms.

      Here’s hoping that the guidelines will make a difference – my mum has been suffering for years without being tested for CD and only took a coeliac test when I was diagnosed (turns out she’s not a coeliac, but she has been much better on a GF diet).

      Thanks for commenting 🙂 Hope you like my blog.

      Posted by samanthastein | August 4, 2011, 1:04 pm

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About me

I'm Samantha, a freelance writer from London, UK. Since being diagnosed with Coeliac Disease in March 2011 I have embraced the gluten-free lifestyle, and am committed to finding delicious alternatives to my favourite foods!

I also have a personal blog.

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