I thought that I would do a follow up post on what to expect at your first Rheumatologist appointment. Three months have gone by in the blink of an eye. Life is starting to get busier as the summer gets closer. We are moving to a new home, and I finally have been given the opportunity to homeschool all five children this next school year. Amongst all the hustle and bustle of our day to day life, I’ve managed to maintain a dairy free and gluten free diet.
With a lot of dietary recommendations from my primary Dr, I was starting to follow the Autoimmune Protocol Diet (AIP). I am all about being reasonable, and tho I tried the diet, it didn’t last. I was struggling to manage being a mom of five, managing a household, and managing my diet. I talked to my Dr about how I managed to maintain being gluten free and dairy free, but as of right now I just felt that trying to go AIP was just too much.
It’s “OK to just do your best”
As I talked with my dr, she agreed with me that it was OK to just do my best. She said that as of right now, gluten and dairy are two of the most common and biggest causes of inflammation. As I gained more confidence with my dairy free / gluten free life, then I could slowly add in one more thing at a time to avoid from the AIP diet. The Dr had asked me to keep in mind that within the next 6-12 months I really need to take action on this.
Because my original ANA test results came back positive with a 1:320 Speckled (which is the highest end of the mild, starting moderate range), and I also was experiencing a full laundry list of symptoms, I was referred to a Rheumatologist. The Rheumatologist I was referred to was three and a half hours away. It was important I find one that wasn’t too pushy with medication, as I prefer to do as much as I can naturally before resorting to medication. As I already changed my diet, over the last few months I managed to lose 15 pounds without making any other changes. In addition, most of my symptoms disappeared. My brain cleared, and my intense brain fog was gone. My constant headaches went away. The pain I’d have in the middle of my bones were much less intense.
What To Expect At Your First Rheumatologist Appointment
While preparing for my appointment, I googled what to expect at my first rheumatologist appointment. There was nothing that would help me ease my nerves which is why I’d like to share what my appointment was like.
First, they have this crazy policy. If you have to call and reschedule your appointment, that’s it, you get no more chances to reschedule. After one time they will charge a missed appointment fee. I had to reschedule my appointment because we had a late spring blizzard roll thru which buried us in almost a foot of wet heavy snow. There is no way that I would be able to leave home at 5 am in a blizzard and drive for several hours. I learned that most rheumatologist offices have a policy like this. A bit crazy, because sometimes you just cant control the circumstances.
After I finally got there for my first rheumatologist appointment, I was surprised at how friendly my Dr was. She was very knowledgeable and was very thorough. My appointment lasted 2 hours with the doctor. She asked me a lot of questions, she had reviewed my chart in advance so she knew what she was dealing with. After going thru symptoms and asking a lot of questions, she had given me the dreaded gown. I dressed in the gown and she then proceeded to check my eyes, nose, mouth and ears. Then she went on to move around all my fingers and toes, bent my arms and legs and checked my range of motion. She continued with pushing pressure points and checked reflexes and lymph nodes.
After she took extensive notes, we discussed what she was thinking about my health. Then when I was dismissed, they had me go to their lab and get another sample taken, both urine and 7 more vials of blood. After a total of about 2 hours and 30 minutes I got to head home.
To Sum Things Up
I went into this appointment knowing that my primary dr was thinking there was a great chance of Lupus, Rheumatoid Arthritis, Raynauds, and Sjögrens Sydrome. Well I did get an official diagnosis of of Sicca Sydrome leading to Sjögrens, as well as Joint hypermobility Syndrome. Neither have I heard of before this. My dr also thinks that I have a somewhat severe food allergy/intolerance, because when I cheat and have dairy or gluten, I get intense pain, as well as rashes. And also I’ve lost and maintained a 15 pounds simply from avoiding those two food groups. It is still very possible that I’d infact have multiple more diseases, that is why I had all the other blood work done, to rule out or to diagnose.
Something tho that I am really looking forward to try, is the eye drops that the doctor suggested. A main issue that I still am having is with severe dry eyes. I can’t wear my contacts anymore, which makes me really sad. She recommended THIS and This to try to help ease my eye discomfort. If you use these, please feel free to tell me what you think in the comments.
*Update October 2018
Since this post was first published on May 14, 2018 a lot of things have changed. I’ve had many questions in regards to what my final results came back as. So I thought I’d add an update here.
Well, surprisingly enough, I traveled multiple times to my Rheumatologist over the course of the summer. Each time I ended up having extensive blood testing done. And my results?
For starters, my original ANA testing was a 1:320. After being on my diet, my ANA numbers dropped to 1:80. The 1:80 is so low on the positive that it actually means nothing. Many healthy people can have that low of a positive and be totally fine. So that was exciting!
I had blood testing done for all autoimmune diseases, food allergies, and several other diseases. All tests came back negative or within the normal range.
Thru this process, we learned that I have food intolerance’s (not allergies). I have intolerance’s to dairy, gluten and glyphosates (which is probably why the gluten). Glyphosphates are what is in genetically modified foods, and in a popular weed killer.
I’ve learned that I don’t react like some with intolerance’s do. Some get immediately ill as if they have a stomach bug (celiacs disease). For me, my intolerance’s are from long term effects. Tho I do get an upset tummy, or rather mild effects when I cheat on my diet. However more so for me, by eating these foods, it tricks my body into reacting similar as to having autoimmune issues. Which is part of why I’ve Lost over 20 pounds of inflammation this year with diet change alone.
My body reacts over the long term by displaying harsh symptoms similar to those of multiple autoimmune diseases. With pains, rashes, headaches and so much more. These intolerances trick my body into raising my ANA levels, and basically make my body hate itself.
After learning that I’m not so sick after all, and that my body just cant handle certain foods or chemicals in food, I buried myself into my reading. I read on this very topic. And I learned that so many people are suffering with the same problems that I am. And that so many people are being medicated with a misdiagnosis. Which makes me incredibly sad.
If you are suspecting that you are one of those people PLEASE talk to your doctor about it. Of course I am NOT giving medical advice, so please don’t do anything without speaking with your doctor first!
Science is coming further and further. We are learning new things every day. I’m still surprised at how some foods that are supposedly good for us, are actually making some of us very sick.
My suggestions are to eat healthy, eat clean, do your research, and always treat others with respect. You don’t know what they are going thru.
Stay healthy my friends.