Shifting Normal... Again

Back in February, I mentioned that I have been struggling with adjusting to living with RA.  This summer I went through a lot of ups and downs with it, including a significant medication increase for the pain.

I hate taking so much medication and I hate being dependent on it to be able to function well through the day.  It does not agree with my stomach so I am on medication to compensate for the medication.  If I miss or am a couple hours late taking the pill that settles my stomach, my joint pain is joined by nausea and stomach pain.

This summer we had a lot of travel in a short period of time.  My diet was not as controlled as usual.  I had trouble finding gluten free food in some places so I ended up eating food that I should have avoided.  As best I can tell, food was the really big change as I was getting enough sleep (more often than I do at home) and making sure to take my meds.  The pain really ratcheted up toward the end of the last trip.  I felt like I was back to early May, from a pain perspective.

I've pretty much spent the last four weeks (time since the last trip) trying to get pain back under control.  Until yesterday, past few days my hands have stopped aching and my ankles were starting to feel better.

Yesterday every joint hurt and it feel like I've gone back at least a week.

During one of the trips, I learned about the AutoImmune Paleo Protocol Diet from a friend.  Between the conversations with him and the information I've read, it appears to cut out any food that could be an allergy source and gives a strategy for figuring out which foods, if any, are contributing to autoimmune issues.

I know from dietary experimentation even before I was diagnosed with RA that gluten has a huge effect on my pain.  It's time to find out if there are any other dietary factors.

I've spent a lot of time finding out where to source meat and finding AIP friendly recipes that will allow me to do some advance prep so that I can eat well and still keep up with my life.  The one thing that was left was to get my rheumatologist on board.

My doctor is very well-read on studies regarding RA and can quote said studies in any conversation.  He's very focused on how medication can help.  I've asked about natural remedies in the past and he said that there is not enough scientific/study evidence to support their use.  Over time, I've learned that if I present information in writing, he is able to put it all together and we end up having a more useful conversation during a visit.

I wrote him the following history and experiment proposal for my most recent appointment.  His answer was again that there is not enough study evidence to support this but he also added that his friend (another Rheumatologist) would greatly approve.  It was really the first time I've seen this doctor seem unsure of what to do.  He talked through the labs with me to figure out which ones would be best to include on the orders and then he said he was willing to work with me on giving it a shot.  I think this is a little outside of his comfort zone because it is looking for factors to control outside of medication.  But I have to give him credit for being willing to work with me.

I'm almost organized and should have my labs done on Tuesday.  The fun starts on Wednesday.  New recipes, new ways to cook, and hopefully an improvement in health.  If I join you for lunch but I bring my meal with me, it's because I want to spend time with you but I cannot sacrifice the experiment over it.  Please do not be offended.

Letter to the Doctor:

History:

From my mid to late 20s onward, I had pain in my hips.  This is very common among the women in my mother’s family and generally accepted as “just a family trait”.

In November 2012, I cooked “low-carb” the entire month and found that my hip pain went away.  I was just cooking those meals for the taste and not for any particular health benefits so this was a surprising observation. 

I wondered if the change in diet was related to the change in pain.  So I spent several months experimenting.  I found that if I ate the same foods but substituted gluten free flours, my pain was greatly reduced or gone.

So, beginning in the Spring of 2013, I dropped gluten from my diet when eating at home.  Eating out tends to be a challenge and I found that I could eat gluten in a meal about once a week without being able to notice added pain.

While in ER for an illness in the Spring of 2014, a blood panel revealed a high RA factor.  I had been noticing bumps periodically coming and going on my hand knuckles and started asking questions.  My doctor referred me to Rheumatology.

Dr. Kolstoe ran more tests and decided that I have Rheumatoid Arthritis, which is not a surprising diagnosis in my family.  Salsalate and Doxycycline were prescribed.  Watching a Duke University round table on benefits of eliminating starches and sugars was recommended.

Between July and October, I missed a few days of work due to an upset stomach.  Eventually, this was correlated to the Salsalate.  After a few months without the Salsalate, I was still having pain so went back on it with Prilosec to balance out my stomach. 

In June 2015, I started ramping up the Salsalate dosage to find a level at which pain might be low enough to function well.  At 3 tablets AM and 3 tablets PM, I leveled off.  The pain was manageable, though not totally gone, and I didn’t have any of the side affects.

Mid-July through mid-August 2015, I had several trips.  It is incredibly hard to eat gluten free when traveling and having to eat out.  I did the best I could but still ended up with gluten in at least one meal per day.

I gained 10 lbs between those trips and am working on taking it back off.

During the trips, I was getting plenty of sleep… probably more than at home.

By the end of the last trip, I had significant pain in nearly every joint in my body. 

We arrived home on August 19.  After 4 days at home and being back on my normal eating plan, my body started to expel junk.  It felt like someone was scraping the inside of my stomach on one day and the next day I had diarrhea. 

After 3 weeks at home and back on the gluten free regime, the only joints still experiencing significant pain are my ankles.  There is still some pain and periodic stiffness in my hands but it is not inhibiting function.  It took about 2.5 weeks for the pain to subside in the other joints. 

While visiting a friend in California, I learned about the “AutoImmune Protocol Diet”.  This is a paleo elimination diet that basically removes any food item that has know allergen issues.  This includes grains, legumes, dairy, seed based spices, and nightshades. 

For my friend, following this diet has helped with his Sarchoid in measurable ways (on labs).  After doing some reading on this, I’ve learned that some people find their autoimmune goes into remission.

I’ve done a fair amount of research on this in the last few weeks and am planning to give it a try. There is a strategy for eliminating allergen sources, strategy for ensuring that the participant gets good nutrition, and strategy for when the time comes to try reintroducing food.  The writers indicate that individuals should start to see some measureable improvement about a month after beginning the protocol and that there are more sustained results (remission for some people) if the protocol is used for a longer period of time.  (Just eliminating sugars and starches was hard for me to sustain but having strategies and eating plans available makes this more appealing.)

I’d like to do an experiment, with myself as the subject. 


I propose that:

1.  Dr. orders a full panel of tests as a baseline for where I am at now.  This should include any tests that would indicate whether the RA is active or in remission.

2.  For period of 3-4 months, I continue on the Salsalate and Doxycycline and change from a Gluten Free eating plan to the AutoImmune Protocol Paleo eating plan.  (Need to work with Doctor to determine the length of time.)

3.  At the conclusion of the initial AIP period, doctor would order another full panel of tests to see whether there are measurable changes on labs.  I would also need to make note of changes in pain location and/ or levels.

4.  If results are as other AIP participants have found, then at the conclusion of the initial AIP period, we would need to discuss whether Salsalate might be able to ramp back down over time and how to monitor affects of doing so.  It would also be necessary to start doing food reintroduction experimentation to see whether the body is reacting to a certain type of food.


Please let me know if you would be on board with the experiment and measurement strategies and whether you have any other thoughts on measurement strategy.

I thought it would be best if I wrote all of this out so that it makes sense.  One of the AIP books is included here, in the event that you need to peruse it before we talk.  I do need this book back at the end of my visit today.  :)