Parts of me doesn't even want to talk about this, but other parts of me knows that I need to let it out. Words are my thing. I can't fully process things when I don't write or talk things through.
I can't even remember how much I have told in this space, and how much I haven't. It's not like I have withheld secret information....just information that has taken me so much time, and energy to wrap my mind around that I haven't yet felt at a point to put it into words. I'm just trying to get a grip on it myself.
I mentioned in my post a few weeks ago that I had a really important appointment with my new doctor to go over all of the gazillion lab tests I had done in the month of April. So if you didn't know already, I have an autoimmune disease called "Hashimoto's Thyroiditis." Basically this means my immune system is attacking my thyroid. I was diagnosed with hypothyroidism in August of 2011, 4 months after having Abigail. It took about 6 months of trying new doses and rechecking labwork before my doctor at the time felt like my dose was regulated enough. I felt ok. Had energy. Lost the rest of my baby weight and didn't think much of it. I wasn't told anything else by my doctor about being concerned or anything....just to take this medication, recheck labs once in awhile and I should be good.
Fast forward to the Fall of 2012, a friend of mine with hypothyroidism had several miscarriages. We started talking a bit, and I found out that hypothyroidism can actually cause infertility and miscarriages. Now that got my attention. We weren't done having kids yet, and of course I didn't want to have to experience the struggles of miscarriage or infertility, if there was something that could be done about it to prevent it. My friend gave me the name of her endocrinologist, and I set up an appointment. He did more extensive lab work on me than I had had done previously to evaluate my thyroid, and it came back saying I had something called "Hashimoto's." I have "what?" (My husband likes to call it "Quazimoto's" as in....The Hunchback of Notre Dame....sweet huh? :)
My doctor went on to tell me... "You have a specific type of thyroid disease called "Hashimoto's." He may very well have said it's an autoimmune thyroid disease to me at the time, but being my 28 year old self at the time, never having been sick in my life, I would have had no idea what in the world "autoimmune" meant anyway. He told me my lab work looked good, and when the time comes that we find out we are pregnant that I should call and let him know asap so he can increase my dose of thyroid medication to hopefully prevent a miscarriage/problems. That is exactly what I did. August 2013, I found out I was pregnant with Alex, and called my endocrinologist before I even called my OB. My pregnancy was normal aside from my ridiculous, never ending nausea, and puking, but baby was ok, etc. Delivery was fine, minus ahem Alex's abrupt arrival that ended up being an accidental home birth
(you can read that ridiculous story here).
About a year ago, (not to give TMI here, but I share hoping that if my struggles can help someone, then I pray they do!) I started realizing that I didn't feel great after eating bread, etc- bloated, lethargic, achy, and that my stool wasn't quite what I would call normal. I hadn't paid attention before honestly, but I had started reading more about Hashimoto's Thyroiditis, and I started realizing, this is more than just "take a pill and you are good for life" No....there was way more to it. I started researching online (yeah I know....don't EVER google your symptoms, because you surely will get things like "you are going to die") and I kept finding out more and more about my disease, and in particular autoimmunity. This was no longer really just about my slow thyroid anymore....autoimmunity occurs when the immune system goes awry and attacks the body itself.
For me in particular, it wasn't necessarily my thyroid being slow that caused my thyroid to stop working....something happened inside of me that caused the inflammation, and turned on the "switch" which just so happened to end up being focused on my thyroid. Pregnancy is a stressor that can do this. We can genetically be predisposed to autoimmune disease, stress itself can cause it, environmental triggers, being on lots of antibiotics or taking lots of NSAIDS, viruses, eating lots of inflammation causing foods (highly processed foods, eating out a lot- not whole grain, fruits, veggies, etc)...there are lots of things that can cause autoimmunity and contribute to inflammation. My switch happened to "turn on" from my pregnancy with Abigail. This actually happens to a lot of women postpartum- being pregnant is a huge stressor on your body. Though we will never know for sure, my current doctor is positive that my thyroid was probably having issues before this, but not showing symptoms yet.
So back to my issues last summer....I started reading, and found a really great resource that I had read articles about online, and then my friend with Hashimotos told me about it, so I went and bought my own copy, but I poured over that book. Obsessively for awhile. To the point of anxiety as I came to grips with reality of all the things no one told me about my disease, that I could have been addressing had I known.
It was in that moment that I started realizing things about myself that finally made sense. I have struggled with anxiety ever since I was diagnosed with hypothyroidism...turns out, it's really common for people with hypothyroidism to get anxiety! Many people with thyroid disease struggle with gaining lots of weight and not being able to lose it. Though I have had times where I struggled a bit, it's never been extensive....all of my struggles have been psychological- anxiety, brain fog, some fatigue.
This book
"Hashimoto's Thyroiditis, Root Cause," by Isabella Wentz is an amazing resource! I started realizing that my thyroid issues are really not answered by taking a pill. The pill helps me feel somewhat better, and I may always take that pill, but in reality it's a bandaid. It doesn't get the root issue of my autoimmunity. What caused my autoimmunity? What trigger put me into a state of my body deciding to attack itself? Was there something in the environment? Did I have an underlying virus that was doing it? Even being on birth control can do it....though I was only on it for a short time, was it that? I had MRSA several years ago that I got while working out at a gym....I was put on probably 6 different antibiotics for about 6 months straight! I may never know for sure. My doctor is suspicious of the excessive antibiotics I was put on for MRSA for so long.
Anyway, the more I researched the more I realized that doing nothing to really treat the causes of the autoimmunity (other than taking a bandaid pill) is really just allowing your body to have chronic inflammation. Chronic inflammation leads to more diseases and deterioration of your health.
Typically one autoimmune disease leads to another, and it is no too uncommon for the diseases to get to the point that they are so debilitating that some may have to quit their jobs, or be so lethargic and sick that they are bedridden.
That got my attention! More diseases? Feeling worse than I do now? What quality of life is that? Something had to change! I have heard stories of people far worse off than I. I knew I wanted to take charge of my health so that I can be the best me I can be. I can't control everything, and ultimately I have to trust that God is the ultimate healer, and that I can't predict the future, and what my story will be....more diseases or not, but I also cannot wisely stand back and just allow myself to continue the life I was living if my body literally cannot eat and handle things other peoples bodies are more resistant to.
The reality is though....other people being "resistant" to the disease I struggle with or not, I am not quite sure how true that is. Autoimmunity is on the rise.
In fact 1 in 5 Americans has an autoimmune disease....20%!!!!
That's crazy! Genetics does play a role, but a HUGE contributor to autoimmunity is our diet. Processed foods are a huge culprit. This doesn't mean you can't ever eat ice cream, but it does mean we should really take seriously the foods we put into our bodies. How often are we eating out, indulging in desserts, etc. Food has the power to heal and nourish, and also destroy depending on what we choose to put into our bodies.
So anyway, in June of 2015 I started this whole process. Initially talking with my chiropractor back in Chicago about my issues and getting started solving the problem. I was tested for some food sensitivities that time, and had some labs done, but then we moved, and I had to find new doctors which was incredibly difficult to do....
I initially saw a new chiropractor here who would do some work on me, but all of it was out of network expenses, another chiropractor who specialized in thyroid disease, but again he was out of network, and really expensive. That was out of the question...I contacted my regular family practice doctor (a D.O.) to see if she could treat me, and she was happy to, but basically she had no experience in doing something this extensive with an autoimmune disease, and I would end up telling her what needed to be done. I couldn't do that. This whole thing was causing me anxiety as it was! I needed someone to tell me what to do and be my doctor....to advocate for me! I then started searching for another endocrinologist who came highly recommended, but he basically told me what I already knew, and that he wasn't going to approach my diet, or outside triggers that could be causing the immune attacks....just the same old stuff I already knew. I ripped up the lab order from him, and came home and poured over my insurance website searching for who would take me in network that was a more functional practitioner (they approach medicine more holistically, but also have gone through medical school, and I knew I needed someone who wasn't just going to keep giving me a pill...I needed someone to help me get to the bottom of my issues that are unique to me!). I finally found one about an hour away in December, and got put on a waiting list. I was told "we think she is going to start seeing new patients in the new year so we will call you when that opens up."
Ahhhh!!! Seriously? One step closer, but still so far....what if she didn't end up seeing new patients? At that point I did find someone else in network a little closer, but I didn't get great vibes from their website or when I called. His first appointment was March (I called in November or December) so I said "fine- I will take it!" At least I had something scheduled.
In January and early February I started feeling really off. I was going through extremely intense mood swings. Only comparable to that which I had had when I was on birth control when we first got married (also the same reason I got off of hormonal BC...it makes me CrAzY!!) Mood swings for a women can be somewhat normal, but when you know what your normal is, and things start changing drastically, I knew something was off. I had been off of gluten and dairy since October 2015 (these can really hinder progress with thyroid healing), and so I started to wonder if maybe my thyroid was healing some and my body was absorbing medication differently. I didn't want to just run to the doctor every time I felt differently though. So I waited until the beginning of March when my 3rd cycle of crazy mood swings set in, and I immediately marched myself into get lab work, because this could not happen again. I was crying all the time. Yelling at Dave. Yelling at the kids. Feeling anxious about everything, and depressed. I could not get happy which is not me at all. Much to my relief, and also disappointment, the portion of my thyroid that creates T3 (another thyroid hormone) was not working anymore, so I didn't need less of my current medication, I actually needed to add on another medication to correct the problem! I was kind of bummed, but also happy to start feeling well again, and literally within a few days was starting to feel like me again.
Sometime in February the office called that had the waiting list and said they were taking appointments for March. I gladly accepted, turned in my paperwork ASAP, and got an appointment. This particular doctor not only was a doctor not a chiropractor (made Dave much more accepting of what I was doing because he trusted an MD more), but also had specializations in integrative medicine, and autoimmune diseases. Jackpot!
I am pretty sure I cried that day. I still hadn't had my appointment, but finally....finally....I was getting somewhere, almost a year after I tried to start this process.
My initial consultation was on March 31st, and I left that appointment crying tears of joy....not because she told me good news. She acknowledged I definitely needed help, but more than anything I left that appointment not feeling crazy! I felt like people around me, doctors included sometimes treated me like this wasn't a big deal. That it was all in my head. Hearing her affirm me that day was worth it's weight in gold. I wasn't crazy! We didn't have all the answers yet, and this would be a process, but what I was feeling was far from normal.
I spent the month of April gathering all of my million lab tests including ridiculously extensive bloodwork at the lab (I think they pulled like 8 or 10 tubes of blood from that blood draw), at home saliva and urine tests, and an at home stool test. You haven't lived until you have had to test your own poop let me tell you :) (Hey and for the grossed out folks...I warned you this maybe a TMI post ;)
I returned for my follow up consultation and treatment plan with my doctor in mid May. This appointment revealed I had several nutritional deficiencies. Most marked ones were my Omegas (DHA, EPA) and Vitamin D. This can happen when you have digestive issues and your body isn't absorbing nutrients from your food properly. I had a large over balance of bad bacteria in my digestive system, an overgrowth of candidia (yeast) throughout my body, and found out I carry the gene marker for celiacs disease, which my doctor said once you have an autoimmune disease, that marker could lay dormant for years, but basically it gets turned on because of what else is going on in your body, so I now also have Celiacs. Totally explains why all things gluten started making me feel like crap :)
We also chatted a bit about Alex, and my intuition has always felt like something wasn't quite right with him. His pediatrician keeps kind of brushing it off. He has never had normal stools, and I found out that he could have gotten something in utero from me which is now causing him problems. I had him tested for celiacs as well which came back negative (although there is a high instance of false negatives), but that was somewhat relieving and also confusing. If not celiac, then what is it?
Nutrition wise she highly recommended an elimination diet to allow my digestive system to calm down, and then gradually reintroduce things to see how my body tolerates them. I decided to do an elimination diet with Alex as well to see if I can figure out what his triggers are and hopefully give his digestive system some time to heal. By default since I have celiacs I have something called
Leaky Gut, but many people without celiacs have it, and don't realize it. I don't want to go into details about it, but I highly recommend you read up on it on the link above, and find out more info here to see if it could be effecting you.
My elimination diet is intense. As in I probably can't have any grains again for at least a year...maybe longer, maybe not ever. For the next 3 months I am allowed meat, most veggies except legumes (green beans and peas) and also no nightshades (white potatoes, peppers, tomatoes), most fruits as long as they are low on the glycemic index- so no bananas, pineapple, or melons. Basically as clean as possible- all organic everything if I can...I can't afford that so I am just doing the best I can with it all, and absolutely NO processed anything! In about a month I can try to introduce egg if I want, but no nuts, or beans for 3 months.....good grief do you know how much I eat nuts, and hummus....sigh.
From what I have read if anyone with an autoimmune issue wants any change of putting their body into remission, grains have to wait for a LONG time before being reintroduced. Which is ok. I was already GF and DF...I might as well go all the way :)
I can't have coffee anymore....suck! My new entire diet with all parameters in place started today. So yesterday I had my last frappachino from starbucks for probably along time....not sure when and if I will ever get to do that again. We ate out for lunch yesterday as well....still DF and GF for that, but I probably won't be able to eat out again for months (just because it is so important during an elimination diet to not have ANY potential irritants in your diet to allow for optimal healing, and going out to eat raises my chances of potential cross contamination to become really high). So for right now I wanted to enjoy eating out one last time.
For Alex I am eliminating the top 8 allergens:
- Gluten
- Dairy
- Nuts
- Eggs
- Corn
- Soy
- Shellfish
- Preservatives
I will do this for him for 3 to 4 weeks and give him natural leaky gut healing supplements (bone broth or grass fed gelatin, and probiotics).
Here is my approved Food List:
When confronted with this diet the fist thing people ask is what can they eat. In fact you’ll be eating the way people ate for most of human history—there’s plenty of food that doesn’t come from a factory or an industrialized farm. Of course, if you have an intolerance to any of these foods, don’t eat it just because it’s on this list.
- Most Organic Vegetables: including anise, artichoke, asparagus, beets, bok choy, broccoli, cabbage, carrots, cauliflower, celery, chives, cucumbers, garlic, kale, kohlrabi, leeks, lettuce, mustard greens, onions, parsley, radishes, rhubarb, shallots, spinach, squash, sweet potatoes, water chestnuts, watercress, yams, zucchini.
- Fermented foods: sauerkraut, kimchi, pickled ginger, fermented cucumbers, coconut yogurt, kombucha, water kefir, etc. You will probably need to make your own or buy one of the few brands that are genuinely fermented and free of sugars or additives. Also, search for information about anaerobic fermented foods in air-tight containers. These ferments do not produce histamines that some people react to (including rashes, digestive upset, inflammation) in aerobic, or open, ferments typically using mason jars.
- Meats: including beef, chicken, fish, lamb, turkey. Fish should be ocean caught with a low mercury content. Swordfish, most tuna, and king mackerel are very high in mercury. Select hormone-free and antibiotic-free chicken, turkey, and lamb. Select beef that is grass fed, hormone free, and antibiotic free. Best choice are grass-fed and pastured meatsfrom a local farm. Second best is organic. Avoid factory-farmed meats that contain antibiotics and hormones. For a source of good meat near you, contact your local Weston A. Price chapter leader, or order using the link on theResources page.
- Low Glycemic Organic Fruits: including apples, apricots, avocados, berries, cherries, grapefruit, lemons, oranges, peaches, pears, plums.
- Coconut: including coconut butter, coconut cream, coconut milk, coconut oil, unsweetened coconut flakes, unsweetened coconut yogurt.
- Noodles: shirataki yam noodles (sold in Asian grocery stores). Avoid the noodles that also contain tofu.
- Herbs and Spices: including basil, black pepper, cilantro, coriander, cumin, garlic, ginger, lemongrass, mint, oregano, parsley, rosemary, sage, sea salt, thyme.
- Other: apple cider vinegar, herbal teas, olive oil, olives.
I know. It's ridiculous. I basically am eating salads for the next 3 months, and lets be honest...for most of the rest of my life :) I will say though....I have spent the last 2 weeks weaning myself off of caffeine and starches so this transition wouldn't be so hard, and after taking out corn, I feel like a whole new person! I can think way more clearly, a lot of my digestive symptoms have died down, and my joints and back aren't aching like they were before. In fact I hardly feel joint pain at all now!
I am encouraged by this result, and am really looking forward to the rest of the process as I haven't even started all of my supplements yet.
Initially after coming home from the doctor after discussing my labs I was pouring over websites trying to figure out recipes for elimination diet and how in the world I was supposed to take care of providing meals for my weird dietary needs, but also a whiny toddler, and 2 other people. I started getting really anxious about it again, but I am happy to say with God and Dave's help I came up with a plan that is simple, that allows minimal prep, and is easy for me to modify for my needs so I am not cooking 3 different meals 3 times a day :)
When I went to the store to start purchasing new things for our diet changes, I got to a point where I was so overwhelmed I almost started crying. I actually finally had to leave. They need support groups for this type of thing! I wanted someone to show me where all these weird new foods were. To remind me that today is only today and tomorrow is tomorrow, and a year from now we will be a year farther than we are right now. I had no idea it would be this stressful changing things! Did you know there is corn in almost fricking EVERYTHING!! It is ridiculous! I have to change ketchups, jams, etc just so alex doesn't have corn in his diet during the elimination phase. So frustrating...so allergy moms....the life of critically reading EVERY. SINGLE. INGREDIENT on a label is frustrating. Really frustrating! My hats off to you for doing this every single day.
Tonight I started to see a glimpse of that world. I couldn't find a gluten free bread that didn't have corn in it for a reasonable price so I made my own for Alex. I doubled the batch to freeze one so it would be somewhat less work, but it made me realize....this is what love does. Those mamas whose kids have allergies watch their inner mama bear roar with a never ending fight to protect their kids. They buy expensive alternatives. They read ingredients. They make things homemade if that is what they can afford to do since alternative foods can be so expensive, and we moms....we just do it.
Whatever our kids need....
Whatever keeps them healthy we fight for them....
We stay up way past midnight for them...
We bake homemade loves of bread....
We scour ingredient lists for hours to find snacks that our kids will like and will also make them feel included if they can't have something other kids have....
I separated out all my supplements by days of the week and times of day like a little old lady tonight, and after I did it I sat down, cried, and stared at them.....
Dave came in and sat with me. I just needed to mourn. To be allowed to be sad at what was, and what no longer is, but also at the potential of the future. I'm 32 not 92. I have Hashimoto's, Celiacs, a scoliosis in my back, feet that will eventually need pretty extensive surgery, and a jaw that will need surgery as well...basically I am a genetic mess, and I just looked at Dave and cried "It just sucks that I am so broken!"
But this is my story. Even moments like this won't go wasted. Food and body image have been a struggle in my life for years so much to the point that I struggled with a borderline eating disorder, and I can honestly say that God is good even in this. This whole entire part of my story has almost entirely freed me of that struggle to instead focus on taking care of my health instead of caring about a flat stomach or a number on a scale. That was something I thought I would never be free from. I thought I would always have that struggle, and yet now I am so incredibly grateful that my God refines in fire.
Would I choose an autoimmune disease? Of course not....but nothing passes through His hands that He hasn't allowed. He knew that it would make me give up control. He knew it would bring me to my knees, and in my weakness on my knees is where I always find Him in the deepest places.
Blessings,
