Explicit ickiness warning!
People sometimes ask if I think everyone with lupus should be on a gluten-free and lactose-free diet.
My answer is that lupus is different for everyone. If you have the same gut symptoms as me, it's worth checking with your doctor whether you need to restrict gluten and lactose.
So what are these symptoms? Usually I just say I have reflux and irritable bowel. If you don't really what those things mean, I guess it doesn't mean a lot.
Here's in detail what is going on (for me, it could be different for other people):
Lactose is the sugar that occurs naturally in milk. (Most things that end in -ose are sugars.)
When I have lactose I get reflux. Sometimes that's just an uneasy feeling in my chest. Sometimes it feels like hunger, and makes me desperate to eat endless amounts. Reflux also takes away my ability to realise I'm full, so I just keep bingeing.
That's mild reflux. If I've had a lot of lactose, I get a more severe reflux. That is just an incredible pain in the middle of my chest. A couple of times, I've found myself on an electrocardiograph machine, because a doctor really wasn't sure if it was reflux or heart attack. Once, I ended up in an emergency department bed, being fed a mix of a local anaesthetic and mylanta, through a long straw so the anaesthetic got to my gut without making my mouth numb.
Gluten is the protein found in wheat (including spelt), oats, rye and barley.
When I have gluten I get irritable bowel syndrome. For me, this causes diarrhea, which is urgent and frequent, and comes with lots of blood. If it's really bad, I pour blood between the loose bowel motions as well. This all comes with either severe cramping pains, or ominous volcanic rumblings accompanied by bursts of toxic gasses.
Recently, my doctor told me it was OK to try a little lactose and gluten again, to see if I have built up some tolerance over my years of not eating them. Now, I can have a very little without a problem, but that very little is exceeded quickly.
At home, I still cook my lactose free and gluten free diet. When I'm out, I allow myself small amounts. And sometimes, when I'm enjoying time with family or friends, I go past my limit, deciding that the enjoyment of the moment is worth the consequences.
So do I recommend lupies (or anyone else for that matter) go gluten-free and lactose free? Well, no, unless they actually need to.
Why I'm gluten free
A conversation with my doctor
Food and inflammation