I’m an obsessive compulsive researcher. Especially when it comes to my health, my diet, and getting rid of this constant pain, I find myself reading book after blog after website and even though I now definitely know more about nutrition and Interstitial Cystitis than my doctor does, there’s a lot of conflicting information out there. Especially when you start to compare different elimination diets.
The great thing about the internet is you can type what you’re looking for into Google and then follow it with ‘is great’ or ‘is bad’ and you’ll find the information you’re after. You can try this with Paleo. For example, typing ‘Paleo is awesome’ into Google brings up 5 reasons why paleo is awesome and 50 awesome things about being paleo along with nearly 5 million other results. Whereas typing ‘Paleo is rubbish’ into Google brings up a 404 not found website (OK, bad example) and Top 10 reasons I’m not paleo along with 600,000 other results. OK, so I think ‘Paleo is awesome’ pretty much one that Google-off, but you get my point. It’s pretty easy to find the opinion or success story you want to on the web… whichever side of the fence you’re on.
Lesson learned: don’t believe everything you read and always try and find an opposite or differing viewpoint from the one you set out to find
And this is one of the dilemmas we face as conscientious researchers of our chronic conditions. It’s often in moments of pain when we reach out to the Googlesphere. For me, it’s when I have a flare just before bed or in the middle of the night. Boyfriend is asleep and I’m in pain and feeling alone and helpless. And the only thing that makes me feel like I have any control is to arm myself with as much knowledge as I can about the causes, the triggers and the cures (there are none apparently) for Interstitial Cystitis.
In fact, it was a painful night that first caused me to search for answers to the question ‘why does my cystitis get worse at night?’ which brought up this forum post from someone asking the same question. Before this search, I had never heard of Interstitial Cystitis (also known as Painful Bladder Syndrome, especially in the UK). But the more I read, the more I became convinced that this was the condition I have.
Now, there is some danger in this. And I wonder sometimes, as I haven’t been officially diagnosed – I’m still banging my head against a brick GP surgery wall trying to get a referral to a specialist instead of an endless supply of broad spectrum antibiotics – whether I actually do have IC or whether it’s something else that I’ve missed on my research travels. But maybe that’s just wishful thinking. The prognosis is pretty grim for Interstitial Cystitis, there being very little research into the condition and absolutely no known cure.
Even more confusing is when you start researching two things in tandem. For example, I am now obsessively reading not only about Interstitial Cystitis and trying to make myself an ‘expert patient’ but I am also reading obsessively about Autoimmune Protocol and the suggestions for healing laid out in that. And although Interstitial Cystitis is an autoimmune disease, and Autoimmune Protocol is about healing from autoimmune diseases, there are many contradictions when you compare the advice given in each.
Take the two diets for instance. Although there is no scientific evidence that diet has an effect on Interstitial Cystitis (there’s not been much research either), sufferers have complained that certain foods are triggers for pain and flares. So much so that a guide has been created that lays out foods to avoid, foods to try, and foods that are bladder-friendly. This is great! An easy to follow guide. EXCEPT… some of those items, which are specifically listed as bladder-friendly, are not even paleo-friendly, yet alone AIP-friendly. Items such as:
- breads, including corn bread, oat bread, potato bread, and white bread, but not rye bread or sourdough
- grains, including couscous and quinoa
- nuts – almonds, cashews, and peanuts, but not macadamias, pecans, walnuts, hazelnuts and pistachios
- seed oils
- cheese – including American (I mean, really? Is that even cheese?)
- cottage cheese
- ice cream
The full list of foods to avoid, try, and include can be found on the IC Diet website.
Now, some of the things on that list go against common sense when it comes to health anyway… especially the pretzels and milkshakes. And as someone who believes whole-heartedly that grains are evil (yes, I’m paleo-ised), I find it hard to reconcile that an elimination diet would include these things.
And I guess the way I rationalise this to myself is that the Autoimmune Protocol looks at all potential irritants and trigger foods for all potential autoimmune diseases and that this isn’t a one-size fits all sort of programme. Because autoimmune conditions manifest themselves in so many different ways, trigger foods will obviously be different depending not only on the individual and their sensitivities, but on the type of autoimmune disease you’re struggling with.
So, how do we deal with all this conflicting information and how do we see the wood for the trees (the trees being the five and a half million conflicting sources of information)? I think in this case, I’d rather be safe than sorry. That, and I started a challenge and intend to finish it and not talk myself into taking a less strict route and then kicking myself if it doesn’t work. Also, once you have developed one autoimmune disease, you’re much more likely to develop an additional autoimmune disease in the future, so avoiding foods that are known to be inflammatory seems to be common sense.
But I still haven’t had a pain-free day yet and I’m getting impatient. Could there be something that’s on the list of ‘foods to avoid’ on the IC diet list that I haven’t been avoiding and could still be a trigger for me? Let’s go back to that list, but this time I’ll list the foods that are forbidden on the IC diet that are allowed on AIP…
- Canned crab meat
- Citrus fruits
- Kiwi fruit
- Cantaloupe melon
- Passion fruit
- Raisins – golden
- Onions – raw bulb onions (assume this is raw spring onions?)
Again, the full list is available to view on the IC Diet website.
As you can see, that list consists mostly of fruit, which is limited on AIP anyway (if you’re a good girl and don’t have an addiction to dates) to two portions a day. Now, I’m not all for the idea of restricting my diet even more. This has been tough enough. But reining in the amount of fruit I eat this week has seemed to make a difference. And I doubt I’d miss cloves and vinegar too much if I cut it out. I can’t remember the last time I had canned crab meat and I think I could give up the sausage.
So I guess the main problems with over-researching your condition are that you may learn more than you want to and you’re probably going to come across conflicting information at some point. My advice is to check the source of information and make sure that the people you’re learning from don’t have a vested interest in you believing one thing over another e.g. like when the USDA told us we should all be eating as much grains as possible.
But the only way you can know for sure is by experimenting, which is what I’m doing now. And I can say for definite that changing my diet has improved my pain levels considerably. I may not be out of the woods yet. But at least I’m learning as I’m going.
Are you an obsessive compulsive researcher? How do you reconcile yourself with the many contradictions you must face?
Breakfast: 2 gluten free sausages, 1 slice of bacon, with salad
Lunch: 1 Big-O-Bacon burger, 1 mini lamb burger, and salad, with homemade mint sauce dressing
Dinner: Bacon wrapped chicken with steamed veg
Snacks: Far too many dates. Damn my lack of discipline!
Pain level (out of 10)
Started out at about a 2 this morning and didn’t quieten down until about 9am. Fine all the way through lunch, but then when all the girls in the office started cracking out the sweet treats, I went and bought myself a bag of dates. Pain went up to about 3 or 4 after this, but went back down to almost 0 after dinner. Seems like recovery time is improving, which is a positive sign.