I Want To Feel Well Again! My Courageous Path To Wellness (Part 3)
Part 3: Finding answers to my health challenges and never losing hope
For those that read my story in Part 1
and Part 2
, thank you. I’ve been blogging for a while now, but never have felt as vulnerable as I did with those posts…. Filled with extreme self-consciousness for weeks after, I became even more humiliated when my husband came home to say, “Oh, so and so read your blog post!” To which I replied with a mortified look on my face, “Which one?!??! Not Part 2....” Yep! The one where I went in depth about all the ways my health has gotten the best of me over the last decade. You know, the stuff only your healthcare team and mom knows about. Yeah, that stuff.
They had read it and learned way more about me than I'd ever want anyone to know. A bit of comfort was provided when my homeopath assured me at my last appointment that my honest sharing about life -- laying it all out there -- is a tremendous service to others. Hoping this is true, I keep going....
So, if it is such private information, why did I share it with you? Because if you had not learned about the profound ways my health has continually challenged me over the years and only grown worse in so many ways, you would probably not have much understanding about what I am going to share with you today. And you might very well have thought I've gone off my rocker!
The symptoms I have been experiencing (exhaustion, injuries resistant to healing) are above and beyond the autoimmune conditions I live with and despite fastidious daily self-care. The way I have felt has left me unable to live the life I most truly desire. As a woman in her 30's who should be in the prime of her life, it has been devastating to say the least.
Sadly, I've been pretty much housebound the last few years with the exception of the healthcare appointments I keep and occasional outings with friends or family that often have left me drained of energy for days afterward. The online community of fellow travelers has been one of my greatest comforts during this unwanted time of isolation.
I've heard from several doctors over the years, “You do more for your health than ANY patient I know!” If this is the case, then please tell me, why has my suffering been so intense? Is this what life will be like for me? People twice my age are surpassing me with their energy level and what they are able to get out and do and accomplish each day. Even people that take terrible control of their health are whooping my butt. What gives?
Providing Keen Attention To Body, Mind And Spirit
I exercise daily (unless my body is requesting a rest day). I eat a 100% organic whole foods diet with meals carefully prepared from scratch. I have not eaten gluten for 7 years — nor corn, nuts, dairy and a few other things due to severe food sensitivities. I get 8-10 hours or more of rest a night.
We eat at restaurants no more than a few times a month and when we do, it’s often a restaurant featuring organic and locally sourced ingredients. I haven't eaten fast food in years. I practice yoga every night before bed (and soon hope to get back to my several day a week practice at a local yoga studio). I pray every day and attend church weekly, as my energy allows. I follow an integrative medicine approach for my health and have the best endocrinologist and holistic care team I could ask for, many at the top of their field locally and nationally.
It doesn't stop there. When I pray, I let my heart fill with gratitude for all of the things I’m thankful for, not letting the weight of my illness and many health conditions overtake what is good in my life. I limit stress and schedule my life as much as possible to not be terribly hectic. I snuggle each day with my pets.
And I have a husband who deeply loves and supports me, and I him. Plus, no matter how bad I am feeling, I try to make a positive difference for those around me by blogging and sharing highlights of my life on my blog's Facebook page
. Even if my life is not particularly cheery at the moment, perhaps I can add a smile to someone’s face or at the very least, help them know they are not alone.Prayers Answered When Not Expected
After years of prayerful requests asking God to help me feel better, I was finally given a potential solution. It was September 29, 2014. I had an appointment scheduled with a holistic nutritionist at a functional medicine clinic. I was actually thinking about canceling the appointment (nothing against this provider, who has provided benefit -- sometimes it's just one appointment too many!). I found out pretty quickly it was a very good thing I kept it. She had reviewed my medical file with notes from several doctors and was able to offer some insight into my suffering. Her possible theory of what has been going on?
A food intolerance to nightshades.
I had heard about them briefly over the years, before making myself quickly forget! They are all the best foods on the planet. Already living with so many food intolerances, there was absolutely NO WAY I would or even could be asked to give up any more food. Nope, not happening. I asked her to explain more about what nightshades were.
Tomatoes, potatoes, bell and hot peppers, eggplant, and any spices that contain them like paprika, chili powder, curry etc (plus a bunch more things like goji berries, ashwaghanda herb, etc).
My mouth salivated as I told her about the french fries at the Birchwood cafe. The last time I was there they were served with house-made garlic aioli. I will not give this special treat up. No!!!
I went home and felt upset beyond belief. We had just made a huge pot of my aunt’s recipe for New Mexico beans — soaked and pressure cooked beans with an assortment of four different kinds of peppers, all grown in our garden! And tons of chili powder. It was out of this world! I told the nutritionist at the appointment about the meal we cooked to eat all week. Along with comments about how good it sounded, she said, “I wonder how sick you will feel by Friday if you keep eating it!”
I paused a little but her words did not deter me. Beans and rice filled my belly that night. I was in heaven. After dinner I did research on the internet and learned things I didn’t want to know. This was going to be so much worse than I ever could have imagined -- far worse than a piddly gluten intolerance.
An intolerance to nightshades would mean no more gluten free pizza from the local pizza shop, spaghetti, chili, curry, tacos, buffalo chicken strips, salsa, ketchup, barbecue sauce, BLT's etc. I was filled with grief for days upon putting two and two together about how this intolerance would affect my already very limited way of eating. Wanting to feel better, I reluctantly began a two-week challenge the following day to see if nightshades truly bothered me. Maybe I'd be lucky?!
Four days later, I had enough. I was ready to challenge nightshades. Despite my husband's promptings not to, we went to the Birchwood cafe where I enjoyed a side of french fries with my delicious turkey burger. It was so good. I treasured every morsel.
The next day I woke up in a familiar daze that I had felt many times before but had never known why. Yes, I had exhaustion every day, but some days were FAR worse than others. This was one of those days. I could barely think or move until 4-5pm. I knew then potatoes were bothering me and had been a major aggravator over the years. I was able to track back my worst days and they were always followed by eating potatoes.
We made some artichoke chicken the following day, using some white wine and jarred artichokes containing "spices.” Bam! Super sick. The nutritionist thought I’d be okay with foods that are listed as having “spices," but it turns out I had to give up those too, including my beloved turkey bacon!!! I tried eating it, hoping the "spices" were not nightshades but fell ill very quickly. Such grief when we have to give up foods we love so much and are staples in our diet.
This is where things got tricky for me… And much more difficult. With the newfound clarity in my body (after not being weighed down by nightshades — a major food group extremely toxic for me that I was most likely eating in some form almost every single day!), I was now starting to feel better, finally….. And as I felt better, the grief slowly subsided about needing to give up so many foods.
But then, the unexpected occurred. I ate rice and noticed the same effect as from the potatoes -- severe sleepiness immediately with achy adrenal glands for hours and barely being able to move the entire next day, I was so weak and exhausted. Then, the same thing happened when I ate beans and gluten free oats — my very favorite gluten free baking ingredient over the years. Feeling so bad, I removed these foods from my diet. I wanted to feel better but wasn't expecting more foods could be making me sick.
I realized after giving them up that I was actually almost eating a Paleo diet. So I gave up a few more foods (sorghum popcorn!!! buckwheat, quinoa) and made the transition to a full Paleo diet on November 1, 2014. Before long, I started having better days than I had in years! More energy, feeling more like me, a clearer and sharper mind! It was a miracle. My husband Jaim turned to me one night at the intermission of a play we were attending and said, “Who put a quarter in you and wound you up?” Sick in many ways most of our marriage, I was quick to respond, “This is me! This is who I am!! You haven’t been able to see the real me because I haven’t felt well for so long...”
Sure, I missed rice, beans, gluten free grains and nightshades tremendously, but feeling better was a much better replacement than these foods, no matter how good they tasted. I met with the holistic nutritionist and told her that what she shared with me about nightshades changed my life. Except she wasn’t too pleased when I told her I was now eating Paleo. I let her know it wasn’t my intent, but I finally felt well enough to notice feeling worse with certain foods, and now I was feeling so good!!
She put me on a supplement to further aid in the healing of my gut. At the start, still on the upswing from Paleo, I felt great. Eventually, over the month of December, many more foods started making me sick when I ate them, causing the same symptoms as the rice, nightshades, etc. This included eggs (!!), spices like nutmeg and mustard, arrowroot flour. The grief came back, big time. I was no longer having any good days and kept feeling much worse again. In contrast to the good days I had after giving up nightshades and going Paleo, this was a huge letdown. Many people feel fantastic on Paleo, couldn’t that be me?
After googling each of the foods that were making me sick, they each led back to a gut healing diet that did not permit these foods. I finally made the connection of what was going on and why my health had completely reversed after such strong initial gains on Paleo. It was the supplement I was put on! The ingredients it contained were inflammatory and not approved as safe on the gut healing diet! I believe they are what further destroyed what gut health I had after thriving on Paleo.
With this realization that came all at once, I started crying and could not stop. Why the setbacks? Why after feeling so good on Paleo, did I trust this practitioner and go on a supplement that destroyed my gut health, not allowing me to eat the very foods I once loved and felt so good eating? I called my husband into the bedroom where I sat in bed crying inconsolably. He could not understand my frustration and disappointment, stating I’d heal again. I just had to wait.
Unless someone has been sick for years, they have no idea how disappointing setbacks like this are. You do everything you can to hang onto your health and feel well. Once you start feeling good again, to have your health slip between your fingers, not knowing when it might return, is heartbreaking beyond words.
At this point I figured out I had now given up all foods but one food group that were part of the gut healing protocol. It took me another week, but I decided I really wanted to feel well, so I took the plunge, giving up one of my most favorite food groups -- nuts and seeds, which were something I ate at least once every single day.
New Beginnings: The Autoimmune Protocol (AIP)
January 5th, 2015 I began the Autoimmune Protocol Diet
(AIP). The AIP is the Paleo diet + it excludes more foods that are inflammatory for the body of an autoimmune individual — grains of any kind including pseudo grains like buckwheat, quinoa and wild rice, corn, rice, beans, soy, nightshades, nuts and seeds, seed spices (bye bye mustard, cumin, nutmeg, etc), eggs, chocolate, black pepper, sugar, processed food chemicals, potential gluten cross-reactive foods, fructose (maximum of 20 grams per day), alcohol, NSAIDS (ibuprofen, aspirin), non-nutritive sweeteners (like stevia and xylitol), and any thickeners or other food additives.
So what can I eat?
Vegetables, fruit, meat and fat.
It turns out there is a huge connection between gut health and autoimmune conditions and a clear reason behind why I have felt so crummy for years. The foods I was eating were escaping my leaky gut which was only irritated further by the inflammatory foods I was unknowingly consuming. Once these foods released into my body by way of my leaky gut, they caused inflammation in my entire body, making me feel exhausted and miserable.
Sarah Ballantyne, The Paleo Mom and PhD scientist who has taken the AIP diet under her wing, explains the research behind what foods cause inflammation in the body for someone with autoimmune conditions of any kind and why they are so aggravating for our guts.This is an article you can read
to learn much more fascinating information about the autoimmune protocol. As a brief summary, Sarah Ballantyne defines the autoimmune protocol as: "It is very simply an extremely nutrient-dense diet that is devoid of foods that irritate the gut, cause gut dysbiosis and activate the immune system…… The diet recommendations of The Paleo Approach
(AIP) are all designed to help heal the gut, to restore normal/healthy gut microorganisms, to reduce inflammation and to regulate the immune system both through healing the gut, regulating hormones and addressing micronutrient deficiencies.” The AIP is also about making good lifestyle choices — movement each day, proper rest, stress reduction, etc.
As a major lover of food, cooking, baking, going out to eat, talking about food, taking pictures of food, sharing about food on my blog many times a week — this couldn’t have happened to someone who loves food any more than I do! It has been an extremely difficult transition. Taking on something this major when already living with several challenging chronic health conditions is daunting to say the least. It has taxed me emotionally and physically.
AIP means that at least 99% of any processed food is no longer okay to eat. Everything has to come from scratch — I’m pretty much eating the way our great-grandparents did! I spend hours in the kitchen many days a week making homemade meals with the safe foods on my nutritional protocol and trying to come up with recipes that taste great. And, we don't have a dishwasher, so just as much time is spent washing dishes which has been challenging and time consuming! Restaurants are no longer safe for me, or if I choose to eat at one, I’m taking a major risk. We’ve had to say so long to our Friday night restaurant dates. And no longer can I toast two pieces of Paleo toast on my way out the door slathered with nut butter as a quick meal.
Is The Autoimmune Protocol (AIP) Helping Me Feel Better?
Well, it took a while to get over the hump I was at when I arrived at the doorsteps of AIP. I finally started having a few really positive days (good energy, bright mood), then got the flu which ended up taking me a little over a month to recover from. And now, yes, after almost two months on the AIP diet, I am starting to have good days again where my energy is improving! It's been a handful of days in a row now of more robust energy and I was even able to attend an event with my husband yesterday and still have energy leftover when I got home! There is still room for improvement but feeling better than I have been in a long time is HUGE! It makes me so happy!
AIP has been a big learning curve. Slowly during this time we have figured out grocery shopping, cooking and freezing of food. As someone with Type 1 diabetes who needs proper nutrition to maintain blood sugar control, it is critical there is always food I am easily able to grab out of the fridge or freezer that is AIP compliant. My digestion still has room to improve, but there have been slight improvements in recent days. I have less pain overall, virtually no headaches and the pain in my foot related to plantar fasciitis is nearly gone. Blood sugars are so much easier to control and I've spent many days entirely "in the box" on my Dexcom continuous glucose meter (CGM).
I am thankful for a tremendously supportive husband who helps grocery shop, makes homemade healing chicken stock (bone broth) for me every Sunday night and helps cook healthy meals that are nourishing for my body and gut. His support has kept me on track and moving forward when it would have been far easier to give up.
I am waiting to have much stronger health before attempting to add foods back into my diet. Once I am ready for that next step, foods are carefully reintroduced in stages from least likely to irritate the gut to most. The rate of healing on AIP is different for everyone. Some feel better in a few months, and it can take a year or more for those who have been sick for a long time.
Truthfully, after the first 30 days on this diet I had enough. I was tired of the many food restrictions and missed my nuts and seeds especially! I shouted to my husband through tears, “AIP is a prison that no one wants to go to!” Still feeling so crummy while recovering from the flu, I had doubts AIP was even working. Hesitatingly (but with great delight!), I ate some pumpkin and sunflower seeds. They tasted fantastic! But my tummy began hurting…..
Then that night after making a huge pot of root veggie soup, I ended up pouring in the wrong kind of coconut milk — this one had thickeners that were not AIP compliant. Both my husband and I tried to get out every last bit of coconut milk. Neither of us thought a possible mere tablespoon left would make a difference.
The soup was so delicious but I had made a terrible mistake. Within an hour, my stomach was in extreme pain. It ballooned out to the size of a basketball. The plantar fasciitis pain returned in my feet full-force and all night long while I slept, my neck hurt so bad I could hardly turn it to either side. I felt horrible. I knew immediately that the AIP diet is surely helping me and after being unwell so many years, the healing will just take time. I need to be patient!
Just like in the healing of my depression through homeopathy and therapy, every ounce of energy gained is extremely gratifying and gives me so much hope. I do believe I needed to stray from the AIP diet to create an unshakable belief within myself that this, no matter how hard, is what I need to do to heal and move forward.
While this healing protocol has been implemented to improve my health and help me live the life I want, there is one other major benefit! I have lost at least ten pounds, probably more, as I did not weigh myself before beginning Paleo. After gaining at least 15 pounds in recent years as my health suffered, it has felt amazing and brought me great joy to look more like myself again. I am even fitting into my size 8 pants and jeans -- unbelievable! Finally, my health does not have the upper-hand!
I have joined several AIP groups on Facebook which have been a big support for me and a real lifesaver. Being able to share this journey with others making the same sacrifices to feel better from the autoimmune conditions they live with is invaluable.
One last fun thing, The Paleo Mom, who has her own phenomenal success story by following AIP, was on a book tour and had a signing just two miles from my house! I was able to buy her AIP cookbook and talk to her afterward! It was a powerful and extremely motivating day.
Especially inspiring, she said that for someone with Type 1 diabetes, following AIP (and hopefully healing my gut enough to be able to go back to a Paleo or modified Paleo diet) will help prevent me from developing complications in my body from my Type 1 diabetes! (by reducing inflammation). This reduction in inflammation will also help protect me from being diagnosed with future autoimmune conditions. As someone who has lived with Type 1 diabetes over 28 years, these are two very inspiring reasons to continue on an AIP/Paleo diet in the years to come!
I’m looking forward to continuing to feel better and living the life I’ve dreamed of for years! I have suffered way too long not to proceed on this dedicated journey toward healing. The autoimmune protocol is cutting edge research for autoimmune patients and something I am thankful every day that I happened to stumble upon.
Please share this article with your friends and family who live with autoimmune conditions of any kind -- or pain, exhaustion, fibromyalgia, adrenal fatigue, etc. Help them to have hope and feel well again. Although it takes tremendous sacrifice and hard work, I am learning that we do not have to suffer needlessly from the conditions we live with. Thank goodness! The AIP is helping me get my life back and I need to shout it from the rooftops!
Please let me know if you have any questions! Follow my AIP and overall health journey through my personal blog on Facebook
. I have started creating many delicious AIP recipes and am excited to share them soon. Thanks so much for reading. I do want to apologize for the length of this article -- there was so much to share with you!
Two more things: I have also been following a diet to treat Candida which I can share more about in the future. And I'd like to point out that I've been helped tremendously over the years through homeopathy by working closely with a classical homeopath. With so many onion layers to heal, and a body that heals at a speed and in the order it desires, my energy level is recently being addressed again with the homeopathic remedy I'm on. I will share more about my transformative homeopathic journey soon!
Wondering if AIP could be for you? I reached out to members of an AIP group I'm part of and will be sharing soon about the many ways these brave individuals with all sorts of autoimmune conditions are healing by following the AIP diet! So inspiring!
**Note for all individuals with Type 1 diabetes considering a transition to Paleo/AIP: I would like to point out that three times within a week and a half of starting Paleo, I experienced the start of escalated ketones and became very ill. While ketosis is a state that can be okay short-term for people without Type 1 diabetes, it is dangerous territory if you have Type 1. I learned this the hard way.
The Paleo/AIP diet is incredibly healthy and often, without trying, can be low in carbohydrates and calories. As a result, my body quickly started escalating into an unsafe zone with ketones, making me nauseous with a resistant high blood sugar requiring three times as much insulin to bring it down. These episodes threw off the hormone levels in my body significantly.
Since then, at the advice of my endocrinologist and CDE, I try to eat 15-30 grams of carbohydrate per meal. By eating enough carbs, I have not had any problems with ketones since. My body also seems to be adjusting now to an AIP diet and not quite as picky about needing as many carbs. I recommend keeping a close eye on this for all Type 1’s starting out on Paleo or AIP to keep you safe and healthy. While I know some Type 1’s like to keep their body in ketosis, I need to share my personal experience which was scary and could have been dangerous.
In Peace & Wellness,