Real People, Real Paleo—Jolaine’s Story (and how difficult getting an accurate diagnosis can be-part2)

December 19, 2012 in Categories: , by

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“Real People, Real Paleo” is a series of posts written by real people who were inspired to share their paleo story with you.  There is such diversity in the challenges that bring us to a paleo diet and lifestyle and in what we hope to achieve by adopting them.  These stories are intended to be a place of inspiration, written by real people, showing the diversity of our needs and our approaches to this way of eating and living, and explaining how each individual’s implementation of paleo meets their needs.  By sharing these people’s stories with you on my blog, I hope to redefine what paleo success is.  I do not believe that eating paleo is purely about losing weight, gaining muscle, and having 6-pack abs.  I believe that paleo is about being healthy enough to thoroughly enjoy life, whatever that means for you, and about sustainability for our entire lives.  If you are interested in writing up your story, use the form on this page to contact me.

So, I’m not in the habit of commenting on stories written for my Real People, Real Paleo series.  My preference is to let these stories speak for themselves.  But, I wanted introduce Jolaine’s Story with some amazing (and horrifying) statistics.  Autoimmune disease can be challenging to diagnose because it often presents as a collection of vague symptoms (such as fatigue, headaches, and muscle or joint aches).  Too often these symptoms are dismissed as signs of not getting enough rest, working too hard, life being too stressful, being over- or underweight, or our bodies just getting older.  What’s more, because there are no “autoimmune specialists”, we see doctors who don’t necessarily have the appropriate training to accurately diagnose these diseases (instead we see specialists in the organ or system that is showing the most symptoms).  A survey performed by the American Autoimmune and Related Diseases Association, Inc. (AARDA) showed that the majority of patients later diagnosed with serious autoimmune conditions had a difficult time obtaining a diagnosis.  In fact, 45 percent of these patients were labeled as hypochondriacs in the earliest stages of their illnesses.  Jolaine and I have had several back and forths via e-mail (and facebook and pinterest!) and I asked Jolaine to share her story because I believe it will resonate with many of you.  And I hope that by sharing Jolaine’s decades-long battles with undiagnosed autoimmune disease, that someone out there will have a lightbulb moment and will be armed with knowledge and confidence to request the right diagnostic tests from the right specialists and finally find their answers.

This is part 2 of 2. Read part 1 here.

 So, about two years ago the beginning of finding the answer began, although at the time I didn’t know it.  I was having considerable amount of pain in my feet, so naturally my doctor suggested a podiatrist.  A little funny tidbit it that his name was Dr. Schumacher!  For those who have zero German knowledge, that means shoemaker. J  He was a really kind fella and found that surgery may indeed be helpful, but that depends on how well I heal.  He asked me series of questions regarding my medical history and it didn’t take long to realize that inflammation could be a huge factor and be a hindrance in healing well.  He was curious, which I like because so am I, and wanted to do some blood tests just to see what we would find.  Sure enough, my rheumatoid markers were slightly elevated, and I had tested positive for a gene called HLAB27.  A small little bell went off in my head and it sounded familiar.  My oldest sister with Crohn’s disease also had tested positive, as had my Mom.  He suggested that perhaps in the next few years I should see a rheumatologist and follow up on the rheumatoid tests just to watch my inflammation levels.  Well okay.  I filed that away in my catalogue of things to do, and not anxious to make yet another Dr’s appointment.  Not long after that, a friend on Facebook posted a very unusual comment saying “I am HLAB27 negative”.  Odd, but I understood so I sent her a private message asking why she was tested, and that I’m positive for the gene.  She responded asking if I have AS.  I didn’t know what that was, so I quickly went to Google and read the symptoms.  I just knew, deep down more than I ever knew that I did have AS. Every single random symptom was a part of my life.  Facebook is good for something after all!  I insisted on a referral to a rheumatologist, and waited another 9 months to get an appointment.  My physiotherapist, chiropractor and naturopath all didn’t think it was likely that I’d get a positive diagnosis.  When I saw the specialist the first time, he did his usual physical test.  Bend, twist, reach, poke here and there, does this hurt, can you take a deep breath and determined it seemed highly unlikely.  And then, for the first time a doctor looked me in the eyes and said; “but I believe what you are telling me about your pain” and he took into consideration my blood tests and family history.  He ordered an x-ray and there it was, my diagnosis.  Ankylosing spondylitis.  My constant companion.

Many would say it’s good to have a diagnosis now.  Now you can move on.  At first I agreed with that thought, but I quickly learned it was not all good.  Having that diagnosis removed my hope that maybe it will be gone one day.  Just a little tweek, the missing puzzle piece, and I’ll be back to my old self again.  If I could remember what my old self was exactly that would be helpful.  The bright side is that now, when people say “what’s wrong” I don’t give a long list of symptoms and feel like an idiot.  It’s a disease they’ve never heard of and that seems legit enough to appease them.  The bright side is now I know where to focus my investigation of learning and healing.  The down side is I still have pain and the losses are not recoverable or measureable.  The down side is, the medical community still doesn’t get it.  I still struggle to get treated like an intelligent adult woman with choices in my own care.  I’ve been prescribed many drugs since my diagnosis followed with “if you don’t follow my advice and prescriptions I will no longer be able to be your doctor”.  I agreed to try each of them for 2 weeks, and each time I go into a flare up of immobility and pain that takes your breath away.  The longest of these flares this year was ten weeks nearly complete immobility, after which I needed to pretty much learn to walk again.  As I write this, I’m again in this same position.

The biggest bright side is during those ten weeks this summer, I came across the paleo lifestyle and diet.  I soaked up every bit of information I could find.  I had previously seen the video of Dr. Terry Wahls and her journey with paleo and healing from MS, but that was before my diagnosis and for some reason that didn’t stick as something I needed to know.  I instead passed it on to my youngest sister with MS and left it at that.  When I look back now I see little pieces of the puzzle I should have picked up on, and can only explain it as I was simply just exhausted and trying to survive. So for those ten weeks I read for hours and hours on my smart phone through the days and nights while lying in bed.  I quickly learned I needed the auto-immune protocol (and an IPad) and there was a huge lack of information available to learn more.  But I had hope again, I had something I could actually do to try and regain control of any kind, to regain health.  I could be proactive and this suits my type A personality really well.  J  I had already found through trial and error many of the foods I couldn’t eat and had been eating mostly paleo for years so the adjustments weren’t as overwhelming as for others perhaps.  Those little tidbits of the AIP were the pieces of information I didn’t know for sure.  I’d heard now and then to avoid nightshade vegetables or too much fruit but never knew why.  No offence meant to those who chose paleo for a belief in evolution or because they belong to Crossfit but that just didn’t cut it for me.  I needed a medical and scientific perspective to really grasp with full belief about the in and outs and why’s of it all.  That is when I came across our friend The Paleo Mom, and her blog and podcasts have been invaluable.  I’ve totally geeked out and print out her posts and pull out the highlighter and put them in a binder.  I sound exceptionally smart at my naturopaths office now, whereas before I was only moderately smart.  Her knowledge extends past what I could possibly have figured out on my own easily, her personal battle and continuing journey help when I feel alone and overwhelmed…because I’m not alone, and her dedication to help me and us is appreciated to the depths of my heart.  I’m not healed, I’m not even in remission, but I’ve made progress and I feel equipped to be a patient that stands up for myself.  I don’t expect overnight miracles after 20 years of this disease, but any regaining of living vs. being alive is a gift I’ll gladly accept.

My journey continues, and underneath all the symptoms and all the labels I’ve been falsely given, I’m still Jolaine.  The only way that can be taken from me is if I let it slip away and believe the lies and react to the ignorance as a personal affront.  People mean well, perhaps at least most of the time, but unless they live this journey they really can’t even begin imagine how difficult a road it is.  This part of my story is really only a small part.  There is much more on the personal and emotional side, and it’s the more painful part of the story.

If I learn only one thing from it all, it’s to be kind always to all people.  I try my best.  Everyone has a story and hurts so we can chose to add joy to their day, or be judgemental and rude.  Choose joy, for yourself and others, even on the hardest of days we must find joy.  For me today, I’m joyful I have flannel against my achy body, for tea and bone broth, and for a husband who loves me in sickness and in health and who still sees Jolaine.

Comments

wow. Jolaine, I am so sorry for the pain that you have gone through. Reading your story has really touched my heart. It makes me so sad to think that you family and friends did not support you like they should have. Thank god for your husband at least! I really hope that your journey continues in a positive way and you find the relief you deserve <3

THANK YOU for sharing!!!! Your story is almost my story I won’t tell you you look good, even though you do, but will tell you that you are now in my thoughts and prayers. Be well and God bless :)

Hi Jolaone – Amazing story! Not sure where you’re living now but I lived in the GTA for the past 4 years. While I was there, I was referred to Dr. Jay Burness in Oakville, he runs a practice called Northoak Chiropractic. He’s a neurological chiropractor specializing in autoimmune disorders. From what i understand there are only 1-2 other doctors in canada with his credentials. His treatments go well beyond traditional chiropractic care. I actually saw him specifically for food sensitivity testing and nutritional treatment based on those results and his expertise… I’m Paleo per “doctor’s orders” and have dabbled with AIP as part of that as well. In addition, him and his wife are both Paleo too so he practices what he preaches! Best of luck.

Thank you Monica! I appreciate the time you took to provide that resource for me. :) I live in BC, but I’ll see if there are similar practitioners nearby. Right now I’m finding great help in IMS (intramuscular stimulation) with my physio therapist. I’ve also just started taking Low Dose Naltrexone and so far it’s been really helpful! With those two options in addition to AIP I’m on a great path I think! Thank you so much!

Kudos to you for not taking your doctor’s advice as the gospel. They will never know the amount of pain you’re in because they can’t see it and if they can’t see it then YOU MUST BE A HYPOCHONDRIAC. I went through very similar issues and learned to stand my ground against family, well meaning friends and doctor’s. You are right, kindness is the best healing of all. :-)

It’s a double edged sword isn’t it Jeanine? If you walk around in sweat pants, don’t do your hair or makeup and look “sick” you are perceived as pathetic, or not trying, or maybe in need of anti-depressants. If you take the time to look nice, well then you must be feeling great! It’s a lack of faith in our truth, and the people who know and love us should believe our words and have faith in them, and us. Yes, be kind. It’s always the best approach. Wishing you health….

Thanks for sharing your story. I’m so glad you finally got your diagnosis and that Paleo is helping you. I have a son with mystery symptoms too and we’ve been going through this for the past few years. It’s so sad that there are so many complicated health problems. Our world is too toxic and it’s damaging all of us.

I have been told over and over again my pain in my back, joints, and gut are in my head. I started to believe everyone and got really messed up about it. Your story has inspired me to stick up for myself and to remember it’s not about what other people think but what I know is true. I can’t even begin to imagine the pain you’re in, it must be horrible to live that way. I will pray for your strength and for the wisdom to know how to heal your body.

Thank you Jenn. I will pray for you too. You can’t give up, you know your body better than anyone. There is an answer and you will find help. You must be your own advocate, read, research, keep seeking. Take care of yourself the best you can and try the Paleo AIP. You have nothing to lose and everything to gain! It’s not easy, but neither is the pain you are in. Never ever give up.

Jolaine, I hope you will keep us updated! I started seeing an integrative doc to try to get a low dose naltrexone prescription. They won’t do it… yet. I think if I don’t see a difference on the plan they have me on which includes natural antibiotics, immune boosters and detox sups I might be able to convince them. I still haven’t been able to take all the things they recommend because some seem to flair me.
I highly recommend the website kickas.org if you haven’t checked it out. Lots of AS folks using paleo type diets and low dose naltrexone to manage their symptoms, they even have a recipe forum (but lots are a no go on AIP). Best wishes for good days. MaryCay

Hi Lindsay! Thank for the compliment and your prayers!! I appreciate each and every prayer! You can find me on facebook and we can keep in touch that way? I see your website, which is awesome, but I didn’t see any contact information on there for you. I look forward to hearing from you :)

It’s really just astonishing. I’d been diagnosed with R.A. 12 years ago. ago I had no reason I guess to really doubt that.I just found out (last week) that in fact I don’t have R.A AT all, I have thyroid disease! So angry and frustrating. I have been to different types of doctors,blood work etc.. never did anyone ever even check my thyroid despite the fact that .y mother and sister both suffer from it. And no-one else in my family had R.A.. plus my R.A. inflammation levels were never as high as my body and symptoms should have been. And me for being so foolish to never have it occur to me to even think it was possible. Now I have way more to deal with as a result of being increased. I’ve been medicine free for several years and just using supplements and nutrition to combat my issues. That has certainly helped, but still… so thank you so much for sharing your struggles with us. It’s comforting to know we’re not alone in our journey !

You are certainly not alone Alisa! I also don’t think you should feel foolish. It’s a very long difficult journey, and learning process. Trying to learn and research and find answers while you are feeling unwell is exceptionally difficult. I often look back at what now seems so obvious, but at the time I just didn’t know any different. Looking back and feeling upset will not benefit you now, and I’m sorry you’ve been on this journey so long and gone through so much unecessary frustration and suffering. Look forward and strive to learn and apply your new knowledge. You’ve come to the right place!! Put your energy into learning what Sarah has here on her blog. Dietary changes can makes all the difference, and yes even remission. When her book is released it will be the most concise and complete information available in print for those with auto-immune disorders and attempting to follow Paleo with the auto-immune protocol. That was my biggest struggle at first…I knew I was on the right track with Paleo, but I need that extra information with regards to auto-immune. Sarah’s blog was the best help I found, and now she is going the extra distance in writing her book. Personally, I will be reading it, learning it, applying it, and sharing it. There is hope Alisa…you just need to take those steps!

Hi Jolaine, I am so sorry you had to go through this but thank you so much for sharing your story. I’m currently experiencing the very beginning of your long journey. I’m 20-years-olds, and I had a shigella infection a few months ago. I believe this may have triggered what the doctors called “Reactive Arthritis,” but I think it may actually be AS. I am HLA-B27 positive and both my mom and sister have had life-threatening auto-immune diseases in the past. I feel so bad that you had to go through all this, and I feel so lucky to have found thepaleomom at the beginning of my onset. I remember thinking that if this had happened to me five years ago, there’s no way I would have been able to figure it all out and this probably would ruin my life. I really hope things are improving for you. I was at odds with my parents, sister, and friends for the longest time as I refused medical help and insisted on doing my diet. It was very stressful to always be fighting with everyone and to feel like no one understood me. I cannot even imagine what you went through. I’m sorry you lost so much of your life to this disease. I wish you the best of luck and hope the rest of your life is happy, fulfilling, and healthy!

Thank you so much James for you kind words, it means a lot. I do wish you had help sooner, but you are still so young and the chances of you slowing or halting the progression of the disorder are fantastic!! I’ve heard of reactive arhtritis and yes, I do believe it’s related to AS but I can’t remember exactly how to connect those dots! I do wish I had the resources available now back when it all started, but I also choose to believe that their is purpose to the journey. Without that journey I would not have met some fantastic people now in my life, I would not be sitting here writing to you now, and I wouldn’t have a new understanding and perspective on the suffering of other people. I don’t know how life would have been different otherwise, but I do have much to be grateful for. I can relate to people not understanding your choices to approach things with diet, but you have to do what makes sense to you and what brings your relief from your symptoms. I tried everything! If it didn’t work, move one, keep searching. It’s a process of elimination in finding diagnosis and treatment. I hope with time, and with the improvement in your symptoms they are supportive James. It’s very important. I believe Sarah has a podcast addressing just this very topic that could give you some ideas on how to address people who are skeptical. Do your best to remove stress from your life as it’s going to only make your symptoms worse. Read Sarah’s book, learn all you can, and I wish for you to find answers and to start feeling alive and happy very soon!

Sincerely,
Jolaine

Hi Jolaine,
Thank-you for your story, it has helped me enormously to understand better my doctor’s attitude when he says that my symptoms are “stress”. I am currently seeking the correct diagnosis. It has been years of process, just to find doctor’s who are sympathetic and understanding. I also live in B.C. and wonder, could you give me the name of your naturopath and any other excellent health care practitioners? I would be so grateful if you could email me. I am so happy your journey to wellness is improving! Many blessings to you! Su

Wow, that’s fantastic! I’m so happy to hear my story has helped you. I honestly don’t think our doctors/GP’s are equipped to really know where to begin when a patient presents with so many symptoms. The protocol is to refer to the specialists to each area of concern. I encourage you to be your own advocate, believe in what you know to be true in your symptoms, and don’t believe everything you hear…do your own research as well. I’d be happy to share my naturopath with you. I don’t have your email address so I’ll have to reply here. If you have further questions I’d be happy to help how I can, just leave you email address for me. Sarah also has my email address if you would prefer to send your email privately to her she can forward that along to me. (THANK YOU SARAH!!!)

I go to Integrated Health Clinic in Fort Langely. http://www.integratedhealthclinic.com/

If you look at the website there are quite a few doctors there, each with their own specialties. What is great is that they each communicate with each other if they would like further opinions. Read through their little biographies and see if anyone specific seems to be what you are looking for. I see Dr. Gurdev Parmar and have been his patient for many years. I believe at this time he is only taking new patients that are needing oncology care, however I know several people who see the other doctors there and they are all very happy with the help they have received.

My GP is also really great. He is aware that I also see a naturopath, and is supportive. He does have a list of all my medications and supplements and I keep him updated. He is not a physician who is quick to write a prescription, and takes the time I need to answer any questions I have. If you live in the Lower Mainland or Vancouver area let me know and I can share his name with you.

I’m unsure of your current health concerns, but I have also found other practioners that have been so valuable to me such as physiotherapist and massage. Again, if you live in the area I can share those with you as well.

I wish you success in finding answers Susan. I sincerely they come quickly and you can be on a road to recovery and wellness. Following Sarah’s blog, her information she so generously shares with us, is key to getting there. It’s a huge step in the right direction! I suggest purchasing her book when it’s released and studying it till you understand and can make those changes to help yourself. I have every intention of buying a copy for all my doctors!! One small step at a time….don’t give up.

Sincerely,
Jolaine

Hi Jolaine,
Thank-you for your kindness to reply to my email. I appreciate your input and encouragement. I do know about the Integrated Centre in Fort Langley. I would very much appreciate the name of your G.P. as mine is very nice but I don’t think he has enough experience with my situation and would appreciate to connect with a more knowledgeable doctor. You are welcome to email me at su@oboro.net.
I am just in the middle of doing more blood work now and have not had a solid diagnosis yet, but the feedback has shown the possibility that my symptoms are autoimmune connected. We will see. My symptoms are joint pain and digestive pain. I am having so many problems with my digestion there is hardly anything I can eat. It is sad because I love to enjoy food! Even eating lean meat and small amount of fat is difficult. I feel pain every time after I eat. Ultra sound shows normal with zero abnormalty in any organ, so it doesn’t seem to be gallbladder related. The doctor says it’s stress, but I feel maybe it has to do with the bile ducts that may be reacting to allergy or some other reaction. For example, when I eat gluten, my joints and muscles hurt even more. I have been following a restricted paleo, as per Paleomom blog until we figure out what is causing this.
I mostly eat mild vegetables and a little bit of meat and tiny amount of fat but as mentioned, still feel pain after every time I eat. It’s very hard, but I know my body can heal. I take digestive enzymes and probiotics. My body seems to react to the digestive enzymes. Anyway, I am doing my best, and trying to be o.k with being in discomfort all the time.
I am so grateful to this blog and to people such as yourself and Sarah, and for sharing your experiences.
Truly, this blog is saving my life.
All the best,
Warmly, Susan

Susan, my heart breaks at your struggle. I understand all too well, as do most who come to this blog. I’ve sent you an email and I hope that that information helps or leads you to another stepping stone to help for you. Never, ever give up.

Sincerely,
Jolaine

Hi Jolaine,

Thanks for your email. I really appreciate you taking the time to write me with your resources. I am responding on the blog because maybe my experience may be of benefit to others.

I have had so many N.D.’s give me opposite information and my M.D has done so as well. Most of them say I should eat grains, or that my symptoms are stress related.
One very good piece of advice I did receive was in regards to the possibility that my body was suffering from dehydration. So to test this, a few weeks ago, I boost my water intake to more than 8 cups per day and I cut out caffeine (green tea) and sea-salt. I started to drink at least 12 cups of water per day and not take any other beverages. Since a week, I feel there is definitely a difference in my digestion. And the chronic pain has subsided! I have been following the Paleo auto-immune diet and it was helping, and recently I cut out cruciferous vegetables but still I was in pain. Also, I realized that my body doesn’t actually like too much fat either, a little but not too much. I coudn’t figure out what to eat!

Finally, you know what, I asked my body. My body said “I want banana’s and oranges”. Seriously. I was going to ignore that request, because with all that fruit sugar and fructose, I assumed (due to what I have read), that I could become more inflamed, but in desperation, I decided to really listen to my heart and only follow what my body wanted. I asked my heart each time I was going to eat, and it said yes or no. And my heart said “eat bananas and oranges”. So I ate bananas and oranges. And then my body said it wanted sweet potato, so I ate sweet potato. And then it said, eat tender greens, and then it said eat beets, and so on and so on. So I ate exclusively what my body wanted. That went on for a week and low and behold, the pain started to subside. After 2 1/2 years of chronic pain the pain has diminished slowly. Currently, I am on a plant-based diet, and will stay with that until my body says otherwise. I still drink 12 cups of water. I don’t take any caffeine, and right now eat no meat and hardly any fat, and only vegetable fat. My plan is to give my body a few weeks or so with this regime, and listening to my body’s signals, to slowly re-introduce the paleo regime, including bone-broth, which I make myself. I also track my nutrients and calories using an online tool, to make sure I consume enough food and nutrients. Right now when I ask my body if it wants fat or meat, it says no, but the idea of having some sashimi (raw fish) sounds appealing (at some point, but not yet).
Also, I must say, since I increased the amount of fruit I eat, and stopped caffeine, I also have tons of energy as well. Go figure. I thought eating too much fruit would cause candida issues, but actually, any symptoms of possible candida such as an itchy foot and fatigue, have cleared up since I stopped taking green tea as well as stopped eating too much fat and boosted fruit and greens intake.

Also I had been taking fermented cod liver oil but stopped that for the moment and will go back to that as soon as my body wants it again, if it does. Also, supplements such as digestive enzymes were causing me even more digestive pain, so I stopped those too.

My instinct is that my body was dehydrated and that perhaps dehydration may have stopped the function of assimilating and digesting fat and meat properly. Also, maybe I was low in absorbable nutrients and easy to digest carbohydrates. And when my doctor asked me to take gluten so we could test if I was celiac, adding the gluten was exasperating the situation. Finally I stopped gluten and the sore joints cleared up.
Although I am not a doctor, I finally realized that it is me who knows best for my unique body, and I have discovered that what is required to heal my unique body, has been my own intuition and trust in my body’s ability to not only heal but also to know what it needs to thrive and be healthy. I now trust my body fully and will follow my inner wisdom and direction first before believing what any-one says.

I really appreciated reading your inspiring story and I admire your vigilance and courage.
I also love this blog, love Angie Alt’s post today and support the paleo-mom whole-heartedly.
Warmly, Susan

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