Real Life

I am a MTHFR with Hashimoto’s, Celiac, and SIgAD after Cholecystectomy

I am a MTHFR with Hashimoto's, Celiac, and SIgAD after Cholecystectomy as seen on The Paleo Parents

I realize this post is epic, and I’d apologize but I have to say “sorry, but I’m not sorry” because I want to capture everything I know and can share. For those of us on our path to health, we are constantly seeking answers and learning from others. Being honest and open about such health conditions, while in the midst of resolving them, creates a sense of vulnerability that is incredibly scary. While I strongly discourage self-diagnosis, I am hopeful my sharing may help others discover their own health conditions – or at least feel less alone in their struggles. Which is why I was thrilled to finally find a doctor who could do a detailed analysis of my health, and spoke Paleo enough to understand my history. It’s been a long time coming, and I’m hopeful of an even healthier future now! Let me clarify, I FEEL GREAT. In fact, I can’t ever remember a time when I’ve felt better. And my annual physical results have consistently revealed numerous improvements and generally great health – other than my stalled weight loss (despite regular exercise and a healthy diet). But, because of that, I suspected something wasn’t right so I sought out a doctor who could do a more detailed analysis.

Overall, I have good news, and bad news. Which do you want first? Doesn’t matter, the answer remains the same either way: I have been diagnosed with the compound heterozygous MTHFR and Hashimoto’s thyroiditis in addition to my already known Celiac disease and SIgAD (many details to follow on what that means below). Turns out, these diagnoses are likely genetic, as my mother has many of these symptoms and health conditions. Once I discovered things in my own health profile and discussed some of them with her (for example, liver function and adrenals) is when we learned she also has those conditions too, making it something that allowed me to further investigate and find the underlying cause. Of course all autoimmune conditions are incredibly hard to diagnose; I didn’t believe I could find an MD to help me but a simple search on the Paleo Physicians Network revealed several near me!

How This Journey Began

Last week I got all of my bloodwork results back (still waiting on inevitable bad adrenal results). While there was lots of great news, like my thyroid levels being managed with diet and lifestyle (no meds needed) and despite a compound heterozygous MTHFR, I’m nourishing my body well enough to have good homocysteine (listen to more on that in Ep 129 of The Paleo View). We also may have found the root of my weight problems. The simple verison of the story goes: I started paleo too low-carb and high fat for me (remember, no gallbladder). I also intermittent fasted which was too hard on my system, since I didn’t have bile stores to fully digest big meals. I ignored all the negative health side effects and focused on all the good, especially the 100+lb weight loss. Two years into paleo, after finishing our first book without any self-imposed rules for stress management, and the huge immune system hit of stopping nursing Wes, that bad digestion and nutritional deficiencies caught up with me. I had what I realize now was a Hashimoto’s flare, but attributed all the symptoms to other things like adrenal fatigue and nutrient deficiencies, which I also had. At that time I started playing with how to heal.

Over the course of the last nearly 3 years paleo has gone from a diet to a lifestyle for me. I stopped focusing on weight loss and started focusing on health, with the expectation that once I was fully healthy the weight would naturally come off. In working with nutritional professionals, I’ve gone on and off of varying supplements, including adrenal support, B12, and digestive support (HCL and Ox Bile). Then about two years ago I began The Paleo Approach protocol and had remarkable results. For the first time in my life my hair and nails got stronger and healthier, my digestion improved, my skin cleared up and became vibrant – everything seemed like I was just full of life. The longer I did it, the more I healed and the better I felt. I decided that I wanted to get off the supplements I was taking at the time and went about transitioning myself off.

I am a MTHFR with Hashimoto's, Celiac, and SIgAD after Cholecystectomy as seen on The Paleo Parents

Where I Went Wrong

When I transitioned to going off my digestive support supplements, because I don’t have a gallbladder, I did so by reducing my fat and increasing my non-processed carbohydrate consumption. While this fixed my IBS and associated nutritional deficiencies and did not lead to abnormal blood glucose or bloating (symptoms I was actively watching for), these recent in-depth blood tests reveal it has reverted my life-long metabolically broken body to increased fasted insulin and high leptin. Let me just take a moment to personally tell you this is hard to admit. From a lifetime of obesity and disordered eating, I felt shame about these results. But, I know that because those same tests revealed excellent triglycerides and a good balance of Omega fatty acids in the blood, it appears it’s simply from too many carbs (not the wrong kind) for me to handle.

My Go Forward Plan

I am going to start a protocol that we can call the FineLinePaleoProtocol. Because I value healthy carbs for the other hormones that are doing well, I’m focusing on adding fat and protein and reducing carbs by around 25%. I am aiming for about 100-150g a day vs 150-200g. I’m hoping this will allow me to maintain good digestion (since I’ve resolved the nutritional deficiencies I had from IBS of too low carb from years ago). I think it should also still be enough carbs for strength performance, as long as I use good carb consumption in the PWO window. The added protein along with supplementing with magnesium should help reset my leptin and increasing my Omega 3 fats (and further reducing my Omega 6s) should improved my measured inflammation and cholesterol (yes, my doctor wants me to increase my cholesterol) while those increased fats will also lower insulin. It’s a delicate balance, not requiring major overhaul, but one I need to tweak. That and supplementing for the MTHFRs with methylated B12 and folate should also improve my liver function. I plan to do this for a month and then retest. If it does not work we will need to come up with a more drastic plan that will require me going back on digestive support or other medication.

For years I’ve talked on the blog, podcast, and media about the importance of a healthy mindset with food and been open about my history of disordered eating. I’ve also intentionally stayed away from food diaries, counting, weighing, or measuring my food because it has a tendency to bring about those disordered behaviors. But, I have to teach myself how to eat again. I’ve been doing something habitually and seamlessly without much thought for years. Reconstructing the way I approach food will take thought and effort, and without tracking what I am eating it will be impossible to know how and what to change. So, I have begun tracking my macros in an attempt to meet the plan the doctor and I agreed upon, with the hopes that it means tweaking the few remaining health issues I have without disrupting the ones I’ve resolved. The steps for now feel huge but in actuality are small: eat 30-50g of protein with less than 25g of carbs for breakfast (hard boiled eggs, protein smoothie, and soup without starchy veg). Lunch and dinner will be meat + lots of veg at 25-50g carbs and 30-50g protein. PWO fruit/carbs up to 50g. The trick for me has so far been in finding good, quality lean protein sufficient enough to meet those requirements. Since I also want to increase my Omega 3 and decrease Omega 6 to help some inflammation that’s a result of the autoimmune diseases and decreased liver function, I’m attempting to eliminate my consumption of turkey and chicken except for rare occasions.  Which means that fish, lean ground beef, venison, lamb, bison, and egg whites (as well as salads for a high-nutrient and low-carb punch) are making their way onto my plates way more often than I’m used to.

I am a MTHFR with Hashimoto's, Celiac, and SIgAD after Cholecystectomy as seen on The Paleo Parents

Several people unaware of the full scope of my issues have suggested that I intermittent fast and/or go on a ketogenic diet. I want to remind you that doing so is what gave me my original Hashimoto’s flare in 2012. I don’t have a gallbladder, which means that I cannot digest large meals only once or twice a day. Ideally my doctor recommended that I eat 4-6 smaller meals a day to help with digestion – but, since my Leptin is high I have difficulty gauging my own fullness and overeat when doing that. I know what 3-meal-a-day portions should look like, so I’m going to stick with that and simply give myself different ratios of fat-to-protein-to-carbohydrate instead. If you want more information on why I don’t recommend intermittent fasting for women, read this. And for why ketogenic diets aren’t recommended for most people, read this and this.

What Are All These Diseases and Why Do I Have Them

No, none of these health conditions is a result of being paleo or heavy weightlifting and strength training.

Let me reiterate. I’ve been asked a lot of questions about all this, and I want to point out two things 1) I feel amazing and the only reason we discovered these issues is because my doctor found a nodule on my thyroid which caused us to do intensive medical testing, and 2) it is because of AIP and strength training that I am managing multiple autoimmune diseases and other health conditions without any medical intervention. The health issues I have now can be directly linked to my lack of a gallbladder and how I was managing. It is very common for people without a gallbladder to have liver problems, I just don’t want to be one of them! What is good news is that I’ve been saying for years “I probably have something else going on that needs medical intervention” because I’ve been eating so clean, and training so hard, and yet I’m always fighting to not gain weight, instead of losing it. My primary care physician was not an expert on this, and the most information I got from annual physicals was “You’re thyroid is on the low end of normal – it’s fine. Let me tell you about all of these fantastic improvements in your blood work!” So I didn’t worry. I focused on what was truly important to me, working on becoming strong and respecting myself enough to make ongoing healthy lifestyle choices – not to lose weight, but to be healthy, happy, and harder to kill (nod to Steph on that tag line).

So overall, what does it mean? You may be confused about what this means, why I’m just finding this out now, what bearing this has on my overall health, and to the Paleo lifestyle I’ve advocated for nearly 5 years now. Don’t worry, I was a bit confused at first too – which is why I decided to wait a few weeks to share the news. Let’s walk through it all together. Hashimoto thyroiditis is my 2nd known autoimmune condition. I also have Celiac disease as well as Selective immunoglobulin A deficiency (SIgAD). I knew about NONE of these diagnosis before I went Paleo. That’s because my symptoms all suddenly got better when I eliminated gluten and processed foods and doctors were able to diagnose the diseases better once they knew it wasn’t just because I was overweight, getting older, had kids, or whatever justification they use for disease being “normal” these days. I’d like to explain what each of these diseases is, so that you can understand the importance of how Paleo and The Paleo Approach Autoimmune Protocol has helped me manage and put these diseases into remission – without even knowing I had them!

SIgA Deficiency

SIgAD is a genetic immunodeficiency. People with this deficiency lack immunoglobulin A (IgA), a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract. Is the explanation for why I’m susceptible for autoimmune diseases. It literally means that I’m deficient in making IgA, which would normally be where people would properly utilize the protective amino acids proline and glycine. I’ve known since we did episode 85 of The Paleo View on it that this is why I am so positively effected by broth and why I treat the consumption of it (which is rich in both proline and glycine) like medicine; it has helped build a strong immune system for me – which is something I’ve never had before!  As a kid I was constantly plagued with seizure-inducing very high fevers, ear infections, bladder and kidney infections, bronchitis several times a year, and even walking pneumonia in the summer time! Since going paleo and then later applying The Paleo Approach, I have not had any of those symptoms. However, this means I’m managing a genetic deficiency – I cannot cure or reverse this health condition no matter how hard I paleo.

Celiac Disease

I believe Celiac is my main autoimmune disease. Unlike Hashimoto’s there isn’t a hormone or medication I can take to resolve this disease. It is an autoimmune disorder that comes from the body attacking itself in the fight against gluten, or gluten cross-reactive foods. A gluten-free diet is the recommended protocol and medical treatment for those with Celiac. It can be very serious if not properly addressed, from Irritable Bowl Syndrome, migraines, and depression, to increased likelihood to cancer. In fact, my mother, who also has SIgAD and Celiac, developed an anaphylactic reaction to gluten a few years ago – after going her whole life with symptoms of Celiac and gluten-intolerance but never being diagnosed. Now, she has to carry an epi pen. For people with Celiac we can’t even eat things that have been cooked in the same fryer oil and something else with gluten – the results of cross-reactivity and the slightest amount of gluten can be incredibly detrimental. Because of my diagnosis, and our belief that Finn also has this, we treat gluten like poison – because for me, it is.

As The Paleo Mom guest blogged for us here, this is also the suspected reason my mother and I have had our gallbladders removed (before we knew better) and for many of my underlying health issues, like low iron, anemia and B12. It makes sense for Celiac to be my main autoimmune disorder since SIgAD affects immune protection in the mouth and digestive tract (where food would normally be properly broken down).  It also explains why I had an insanely high white blood cell count that was increasingly getting worse as I aged (numbers the same as someone with Leukemia), that drastically improved when I went Paleo (gluten-free).

Hashimoto’s (thyroid disease)

And then, the new diagnosis of what I believe to be another disease I’ve had for a lifetime. In 2011 I had test results come back and my doctor informed me my thyroid was on the “high side of normal.” I didn’t investigate back then since that doctor said “normal”. After the (now known to be) Hashi’s flare in 2012, I learned to self manage this disease without even knowing I was doing so. By following The Paleo Approach, thinking my AI disease was only Celiac, it eliminated most of the symptoms of Hashi’s. In fact, when I went to see this integrative doctor in January and explained that I thought I had Hashi’s, they went through a list of questions for me and told me they did not think that I had a problem with my thyroid based on my answers because I didn’t have the classic symptoms. And then they touched my neck and felt a lump. I won’t go into the incredible fear and stress that ensued over the next few weeks as we awaiting blood test results, ultrasounds, and finally a biopsy of the nodule that was ultimately deemed benign – but rest assured that process didn’t help my adrenals! Despite the fact that my blood tests reveal that I’m borderline for Hashi’s, by definition a nodule means either you have thyroid disease or you have thyroid cancer. I’m happy to report I do NOT have cancer.

Stacy Doctor, Paleo Parents

My doctor and I have agreed that, for now, I won’t go on thyroid medication. Since going on synthetic thyroid hormone means the thyroid will start decreasing what it naturally makes, it is very hard for people to get off the medication once on. And since my Hashi’s symptoms and blood work appear managed and under control with diet and lifestyle, we will focus on improving other factors in my health.

MTHFR

I know, it’s the new buzz word in the community (we even JUST did a podcast on it before I knew!). Frankly, I wasn’t very interested in finding much out about it until I received the diagnosis. Ultimately it appears I have been nourishing my body well with nutrient-dense AIP foods that this Methylenetetrahydrofolate reductase (MTHFR) is not significantly affecting my health; I know this because my homocysteine levels are normal. However, MTHFR may be a significant factor for my liver health so I have looked into more about it: MTHFR is one of the most important enzymes in human physiology, having influence on at least as many biochemical processes as it has syllables in its nearly unpronounceable name. In practice, MTHFR function is an important predictor of predispositions to chronic disease states, and interventions aimed at optimizing MTHFR function can often be preventive or therapeutic

Put most simply, MTHFR converts 5,10-methylenetetrahydrofolate into the activated form, 5-MTHF or 5-methyltetrahydrofolate. Though this reaction plays a part in many biochemical pathways, it is probably best-known in the context of breaking down the amino acid homocysteine. This process produces methionine and eventually S-Adenosylmethionine (SAMe), a crucial DNA methylator. The role of MTHFR in health and disease has been the subject of intense research in recent years, and this work is beginning to influence clinical practice. In many ways, MTHFR function provides important clues to the risk of developing particular diseases, and to the etiology of seemingly unexplained or unexpected symptom patterns.

Cholecystectomy (gallbladder removal)

I’m still SO frustrated I had my gallbladder removed nearly a decade ago. After a low-fat wheat-and-soy-filled vegetarian lifestyle (high carb, high sugar), my body broke down and began forming stones. The pain of the attacks when these stones would block the bile ducts was worse than giving birth on petocin with no medication. I was told that I wouldn’t even know the gallbladder would be gone, that I didn’t need it, and the removal would solve all my problems. I was never told to me that it was scientifically linked to gluten-intolerance and to try a gluten-free diet before surgery. But that’s in the past, and I’ve done my absolute best to educate the world about the dangers of this surgery because I’ve struggled with the repercussions for so long. To find out on my own so many years later that people with Cholecystecomies often have non-alcoholic fatty liver disease is infuriating.  It is why I am so adamant and passionate about figuring out the root of how to get my liver healthy again.

Adrenal Fatigue

We are waiting official confirmation, but I most assuredly have adrenal fatigue. While I think of it as a common condition that I previously hadn’t given much mind to – I see this at the root of so many of my problems. The more I’ve read about it, the more I realize I need to work on improving my own body’s response to stress. I’m one of those people who when they get nervous or angry has extreme digestive upset. I’m the type of person who deals with stress externally extremely well, but internally I’m an emotional basket case and it affects my sleep, my ability to think clearly throughout the day, and my emotional response to handling situation. I’m the person in our tribe who chases down the wild beasts and prevents them from attacking the children, but who poops their pants and yells at everyone for days after because I’m still recovering from that stress. The more I read about adrenal fatigue, the more I realized this was a condition I had that I will proceed with medical treatment for, in addition to continued lifestyle improvements.

Adrenal fatigue can wreak havoc with your life. In the more serious cases, the activity of the adrenal glands is so diminished that you may have difficulty getting out of bed for more than a few hours per day. With each increment of reduction in adrenal function, every organ and system in your body is more profoundly affected. Changes occur in your carbohydrate, protein and fat metabolism, fluid and electrolyte balance, heart and cardiovascular system, and even sex drive. Many other alterations take place at the biochemical and cellular levels in response to and to compensate for the decrease in adrenal hormones that occurs with adrenal fatigue. Your body does its best to make up for under-functioning adrenal glands, but it does so at a price. [source]

Too Stuborn To Not Succeed

I can’t say I’m surprised by any of this. I’ve done countless interviews and posts where I’ve very clearly stated how extremely unhealthy and sick I was before, and how Paleo literally saved my life. All of these health conditions make me more likely for chronic illness later in life, such as cancer and stroke. But, I’ve worked so hard on my health, I refuse to be beaten at this point! I know this all seems overwhelming, detailed, and like a bunch of words that you’ve never heard of before. That’s OK. There’s someone, somewhere with these same issues who is struggling to lose weight or find ideal health, and I want to make sure that I share the story of how real foods and a healthy lifestyle have helped me.

I am a MTHFR with Hashimoto's, Celiac, and SIgAD after Cholecystectomy as seen on The Paleo Parents

But Stacy, You Say You Feel Good

Seriously, I DO feel GREAT. But I’m also almost constantly on the edge of needing to take timeouts. This summer when I traveled to AHS and had a travel nightmare I was up for more than 24 hours straight and nearly lost my mind. I had emotional outbursts, couldn’t focus to give concise presentations, and was extremely overwhelmed. Returning from that trip I re-prioritized my life. I realized how much we’d taken on, and given my full-time job and 3 children who desperately wanted and deserved my attention, we decided to stop writing books, to scale back on the blog, to expand our team and focus more on what moved us – creative content we were interested in – rather than burdens and obligations we felt like we had. It was amazingly freeing and allowed me to recuperate. Just in time for me to start that entire cycle all over again with the book tour. Being away for 2 straight weeks put me behind at everything in my life: my job, the blog, and the family I so desperately missed. I was extremely sleep deprived, I had not been able to focus on my usual training, food and lifestyle habits. Again, I regrouped and got myself back feeling good again by creating healthy habits after the holidays.

So why is this just coming up now? Because my brave friend, Dr. Sarah Ballantyne, was recently diagnosed. Read her well-researched and informative post about the disease here and then her incredible follow-up about why she found out about it later in life here. Upon discussing this matter with her, both on Episodes 129 and 131 of The Paleo View as well as personally between us, I knew I needed to finally find a doctor that could look more into my thyroid.

I am a MTHFR with Hashimoto's, Celiac, and SIgAD after Cholecystectomy as seen on The Paleo Parents

What Were My Symptoms?

It was interesting, going through the intial visit with a paleo-friendly office. I was able to answer almost all of the questions to symptoms the same, “Not since I went Paleo, no.” Some previous classic symptoms I experienced were extreme exhaustion, irregular heart beat, weight gain (or inability to lose weight), inability to regulate body temperature, especially to extremities (think sleeping naked with socks on), joint and muscle pain, constipation, dry and thinning hair, heavy menstrual flow or irregular periods, depression (I was on prescription meds for this as a teen), oversupply and leaking breasts (true story: I still produce milk despite Wes weaning over 2 years ago) and anxiety attacks (panic disorder).

Looking at the symptom list now I can think of all the instances where some of these surfaced when I would go through incredibly stressful periods in my life – like when I was in college and had to drop classes because driving there after work in the evenings caused anxiety attacks. Or when we were finishing a book and I started having anxiety attacks during cross-fit WODS. Or when my grandmother died and I had anxiety attacks daily while in a deep depression. I also lost my period for 3 years before we got pregnant with Cole, have always had joint pain (like, hear my knees cracking as I walk down the hallway joint pain), thinning hair  (see my post on my hair growing in when I started Paleo here), and menstruation and cramps so heavy I missed days of school in high school. Of course, the obesity from my early childhood is also an indicator of hypothyroidism. Sadly, children’s doctors and primary care physician’s aren’t trained in autoimmune diseases. They wanted to treat the symptoms, instead of looking for the cause.

Mostly, what I thought of, was how obviously my biggest flare was a deep depression when Wesley weaned. I was grasping at everything I could find (blogging about it here, here, and here) to resolve what I now realize was an autoimmune response – very typical when women’s hormones change from being either pregnant, nursing or the end of either. I believed it was adrenal fatigue, gall bladder issues, post-nursing depression, and a myriad of things that all came together at that time. But in fact, it was a full-blown autoimmune attack on my own thyroid – the first I’d felt since going Paleo. As I noted above, it was at that time I focused on healing – eventually finding The Paleo Approach’s autoimmune protocol and have been feeling better and better since.

Girls Matter by PaleoParents

The Resolution

Not only have I resolved all of the thyroid symptoms noted above, but I have even improved conditions before that flare. For example, what brought me to Paleo was a severe dairy intolerance, and now I am able to consume high quality dairy in moderation without any affects or repercussions!

But one symptom remained: I wasn’t losing weight.

And as I’ve said a million times before, and even said to my doctors the other week, I don’t need to lose weight. If I stay this weight my whole life that’s fine with me. My original weightloss goals have far been exceeded. I’m a happy, active person. However, the inability to lose weight when I eat so cleanly and train hard and often is a symptom of something else being wrong. Which is what I was worried about. I’d be thrilled to lean out and lose weight, but I’m much more interested in being healthy.

But I want you all to know that as much as I advocate health at any size and self respect, there are cases where when things just don’t add up, it’s worth seeking the help of a medical professional as soon as possible. I should have gone to see a doctor about this sooner, and my health would have been improved if I had. The same is true of the white blood cell count I had years ago. Doctors told me to see a specialist, who likely could have discovered I was Celiac before I accidentally discovered it myself by going Paleo, and my health could have been improved if I hadn’t been afraid of what they’d tell me. I’m fortunate I don’t have thyroid cancer, but if that had festered for years while I didn’t seek medical help – well, I don’t want to think about that what if.

That’s where the good news comes in. I know my health condition now. I can take the next step to my journey of healing. And since the prospects of this new protocol simply mean feeling even better, healing my body, and potentially losing unwanted fat – I’ve got nothing to lose and am excited for the future! ♥ How’s that for the positive thinking adrenal-support protocol?!

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