Bipolar Disorder ~ Borderline Personality Disorder ~ Irritable Bowel Syndrome (IBS) ~Food Allergies ~ Leaky Gut ~ Eczema ~ Migraines ~ Multiple Chemical Sensitivity ~ Heart Palpitations Chronic Pain Syndrome ~ Chronic Fatigue Syndrome ~ Fibromyalgia Histamine Intolerance (HIT) Mast Cell Activation Syndrome (MCAS) ~ Ehlers-Danlose Syndrome (EDS) ~ Marfans Syndrome POTS/ Dysautonomia ~ Adrenal Fatigue Insomnia
This is everything I could be diagnosed with in Conventional Medicine,
I have been diagnosed with Migraines, Severe Depression, and Chronic Anxiety. I think I learned early on after going to several doctors and a neurologist, regarding my migraines; they knew A LOT about how to diagnose, but didn't have a clue what was causing it, or how to fix it. The drugs I was prescribed didn't do a thing to touch my migraines! And antidepressants never helped me, and some made me worse. But I can say that I'm grateful that I wasn't the kind of person that was dependent on doctors, and I learned quickly that I wasn't going to get anywhere with conventional doctors. Luckily I have met some incredible Naturopathic Doctors, and Crazy Intelligent people these days!!
My whole life I was what you would consider "sickly." I was born with a heart murmur that didn't go away until I was around 8 years old and at a few months old I developed a severe infection, was hospitalized, and loaded with antibiotics. So I was predisposed to problems and the first inclination was the murmur. I always remember being quite a high anxiety child. I worried and feared everything. My first memory of gut issues was walking home from school with severe stomach cramps at maybe 9 or 10 years of age. At 12 years of age I transitioned from a one room school house to a class of 20 students. I was so sick with anxiety every day, I couldn't eat, I couldn't sleep, I had severe IBS which only added to the severe anxiety. By 13 I had my first migraine, by the time I graduated I was having migraines on a monthly basis. By the time I was 20 I was having migraines weekly. At my worst, I lived with chronic and debilitating pain throughout my body, I had zero energy. I was dealing with horrible anxiety, couldn't leave my house, couldn't talk to people, I felt trapped within myself. My cycle was a mess. After my second child I was having at least 3 migraines a week. My migraines also consisted of nausea, vomiting, hot and cold sweats, and severe light and chemical sensitivities. My husband began missing work to take care of our kids. About that same time my Father In-law passed away from cancer and it finally hit me that my kids lives were in threat. (As I'm lying there half dead no less!)
My journey went something like this....
- In Spring of 2010 at a Weekend Christian Retreat, I was filled with the Holy Spirit yet horribly sick all weekend. I ran to the bathroom as I always did, and when I came back out I was greeted by a woman. She was checking to make sure I was okay. I told her I had IBS, (I didn't even think I had IBS, but it made it a little less embarrassing). She laid her hands over me and hugged me and she prayed for my healing. Healing, who needs healing! (My life has never been the same!) (Of course at this time, life got a whole lot worse before it got better!)
- Had my daughter Winter 2011. Discovered MSG (Monosodium Glutamate) and what a horrible neurotoxin it was and I started a blog about it! Led To Be MSG Free (It cracks me up to read this now. Not only because of how hard I tried to stay away from MSG on labels and how useless that was, but because my poor husband thought I was being radical about cutting all MSG out of our diets and was starting a blog.... Oh my poor husband 5 years later, he's been through the ringer!)
- I discover the GAPS Diet! I express the same joy, excitement, and conviction that most GAPSters do, "I'm gonna be healed!" I had no doubt God was guiding me in this journey and I couldn't stop talking about FAT! :)
- I discovered FAT in Coffee is AMAzing!! I have a lot of Phat Cup of Joe Fans!
- Detoxing on GAPS with my hit post "Body Odor You Can Be Proud Of!"
- March of 2013 we finally begin GAPS Intro I start a new blog "Food Proof Fool"to track our progress!
- April and almost 2 months on GAPS and I've started connecting my Migraines to Amino Acids. I give my own rendition of the MAO-A mutation that I'm convinced I have. (an OCD habit of connecting the dots.) Me and the kids are not doing good on several foods still. Still have NOT connected it to Histamine (FYI theory about MAO-A isn't very accurate)
- I quit blogging about GAPS at this time as I quit seeing further results as our sensitivities continued. (We had so much healing through GAPS, but had so many unexplained reactions to "healthy" foods.)
- During this time I (by the Grace of God) came across a man (more like and angel) whom I was trying to explain my "awesome" MAO-A theory to in some Facebook Group. He directed me to Amy Yasko, told me to join the MTHFR Gene Group, and told me his migraines went away after going on a low sulfur diet due to a CBS Genetic Mutation. I started connecting more dots and quickly realized that we are ALSO very sensitive to sulfur foods.
- By the time I was able to order my 23andMe Kit I was convinced I had the CBS mutation and the MAO-A Mutation.
- I received my results.... And I cried, and I cried.... (Please don't do this, do not cry! You are not defined by your genetics and just because you have certain mutations does not mean they are causing you problems. When I first saw that I was compound heterozygous for MTHFR I was incredibly overwhelmed. BUT I've learned that the following mutations were the least of my issues!)
I am growing more and more convinced, that the shear blow of our 23andMe genetic results and the impending overwhelming world we enter will cause more health issues than we began with! I use to think at one time, that the more information people have the better off they will be. And that was the mission I set out with.....But within a years time of having this blog and community, as I had watched others journeys unfold, and my own journey unfold.....I realized the more people know, the more confused, overwhelmed, stressed out, and completely stuck people become.
I had incredible success right away, and I wanted to shout it out and share it with the world. But I quickly saw that while I had this success, many got worse. And while some had success right away, it didn't last for very long. We are incredibly complex beings, and I often feel like God is laughing like, "You really think you are going to get this all figured out, I created you ya know!"
So I will continue my story, and I will spare you the overwhelming amount of information while still letting you see what my approach was. But I want to make it clear that I NO LONGER support treating mutations ALONE. I believe that treatments should be based on solid information (like labs including a good interpreter) while using genetic results. I DO believe that some people can have enough intuition to treat themselves blindly based on their symptoms and mutations, just as I did. But those that choose this route have to realize that there may come a time in which things take a nose dive, because you have thrown your body chemistry out of balance. That is what high dose supplementing will do in a very complex body that is in need of vast amounts of nutrients in a very intricate balance. I base my views now on this understanding.......
The way I addressed my Mutations went something like this...... (Based on Yasko's Protocol)
- Addressed CBS first for a total of 3 weeks (before introducing anything else) by following a low free thiol diet and taking Moly-B, Yucca Root, and Flushes with 3 Activated Charcoal followed by enough Magnesium to produce a bowel movement (once or twice a week.) Some people have to wait longer before introducing anything else. (After I saw a morning reading of 800 on the sulfate strips, I felt like I was ready to move forward.)
- Next I addressed any possible extra unused B vitamins by taking Lithium Orotate daily. (Helps drive the B's into the cells) Did this for about a week before introducing anything else. Started with 2.5mg and worked my way up to 5mg. No adverse reactions and actually felt happy!
- Began to introduce Methyl B-12, no reaction and felt good and after 3 days moved forward.
- I introduced MethylFolate, I felt anxious like I wanted to jump out of my skin (Methyl Sensitive due to my COMT mutation.) (I no longer take methylfolate, realized it wasn't necessary for me and now take folinic acid.)
- I began Homocystex Plus from Seeking Health. Still continued reacting on 1 capsule. Started doing one every other day, and was starting to feel really good and stable, but by the time the second day was up I could tell I was in need of more.
- I began taking 1/4 Capsule every day, that worked wonderful for a couple weeks, but I quickly realized my threshold was increasing. So I continued to increase it until I finally reached 1 capsule a day.
- No more anxiety, no more depression!
- At this point I'm shocked and truly grateful to have my anxiety and depression under control! I have all these other mutations (COMT/MAO-A/VDR) that effect my mental state, but I'm feeling 100 times better! Food still effects me emotionally (except sugar quit making me crazy, which is awesome! I had always blamed it on Candida!) but I still have been consistently without depression. Some foods high in free thiols (sulfur), histamine, glutamate, or tryptophan can cause me anxiety, or extreme agitation. I still don't have the lovely dopamine highs or the wonderful feelings of contentment, but I do get glimpses here and there as I get closer and closer to producing more neurotransmitters and balancing them out.
Since finding some balance I've slowly introduced some of this..
- I learned through Dr. Yasko's Protocol that balancing GABA/Glutamate levels is vital for neuro health and balance. I've noticed less sensitivity to foods since introducing GABA. (I could have addressed this earlier along with CBS, but missed it.)
- Phosphatidylserine (PS) has been a game changer for me! I am a much more pleasant person with this on board! I went a period of time without it, and when I got back on it I realized how amazing it was working. This is taken to help bypass the BHMT mutation.
- I've recently switched to the Seeking Health B-Complex Plus, I'm up to 3 capsules a day now. My COMT sensitivity has diminished greatly! (Because of all the niacin in it!)
- I've started taking Trace Minerals from Seeking Health as well.
- I started taking BH4/Biopterin to support Ammonia Detox and Neurotransmitter Production. This is something that I could have introduced after clearing the CBS Pathway.
- Immunothrive is an all natural herb I've started to help balance my immune system. T-Cells can become imbalanced due to Oxidative Stress, and it helps regulated mast cells. Within a couple weeks of using Immunothrive I quit reacting to everything. (A large immune burden and heavy metal toxicity will also dysregulate and overstimulate the immune system. My readers can get $3 off with code " histamine3 " at Immunothive.com)
BIG Dots I've connected along the way.
Histamine Intolerance and Mast Cell Activation Disorder.
My theory...... Mast Cell Activation is what causes my migraines. Severe pain especially in the location of the base of the skull, behind the eyes, down the neck always on the right side. Maybe two times in my life it's happened on the left side. I get migraines with an aura some times, but rarely. Those have quit completely since treating methylation. (BUT I got a whole bunch when my Potassium crashed, Read my research article Migraines and Mast Cell) I think this issue starts OUT as histamine intolerance due to methylation defects or poor gut health. Then by oxidative stress, caused by poor methylation, causing t-cells to get out of balance...... Then over liberation of mast cells through over exposure to histamine collecting in mast cells essentially genetically modifying Mast Cells to be over active...... It then becomes a viscous cycle. You have an overactive Immune System with over Active Mast Cells. It's hell on earth! I am now in the belief that the biggest, I mean the BIGGEST cause of HIT and MCAS is from a large viral and pathogenic burden as well as heavy metal toxicity. And that alone contributes to oxidative stress and poor methylation.
Histamine Intolerance can be caused by a number of things. Poor gut health causing low DAO Enzyme production, Methylation defects like DAO Enzyme mutations, HNMT Enzyme Mutations, MAO Enzyme Mutations, Estrogen Dominance, Adrenal Fatigue. Mutations in MTHFR A1298C have been linked to Mast Cell Activation. It's also been linked to the KIT gene. Mast Cell Activation Disorder can be either related to the overabundance of Mast Cells throughout the body and over activity of Mast Cells throughout the body. They collect the most in the brain, stomach, and lung tissues. Mast Cells are also found in tissue specifically surrounding the spinal cord. (I have always tried to explain the feeling I have within my spine over the years. Almost like a Restless Leg feeling or like there's poison in your spinal fluid.) (Read my article on Histamine Metabolism)
Low histamine has been the MOST effective approach to preventing my migraines. I know two people now who have gone on the GAPS diet and it resulted in SEVERE Mast Cell Activation Disorder. By constantly overloading a body ALREADY predisposed to Histamine Intolerance, and overstimulating the Mast Cells over and over again, genetic modification comes in to play. Mast Cells are normally signaled by antigens or IgE responses. But these friends of mine have been in and out of the ER with anaphylaxis. Due to large amounts of histamine collecting in mast cells throughout the body and especially gut lining causing inflammation it's resulted in even more SEVERE leaky gut (from a diet designed to heal the gut.) NOT EVERYONE IS PREDISPOSED TO MCAD OR HIT, BUT ONE SIGN YOU MIGHT BE PREDISPOSED TO MAST CELL ISSUES IS ECZEMA. These two people did GAPS way better than I did. I must say, I was "gratefully" lazy on GAPS. I never did the 24 hour bone broth, and when my daughter had a physical reaction to sauerkraut, I quit giving it to her! And thank God, my migraines have been a huge radar for our diet, (these dang migraines saved my life!) Most people think symptoms of elevated histamine are actually die off AND THEN, they assume they must be doing something right, so they hit it even harder. So dangerous! I never assumed that everything was die-off thankfully, though I still thought a lot of things were die off that really weren't.
Ehlers-Danlose Syndrome (Possibly Marfan Syndrome)
Another thing I've discovered along the way is EDS or Ehlers-Danlose Syndrome. I first discovered this disorder when asking about me and my kids abnormally translucent skin that shortly developed after birth. Turns out, OUR more than average flexibility, severe flat feet and my degenerative bone issues are very much a connective tissue disorder. Since joining the EDS community I've come to realize that they believe that this huge and wide range of symptoms associated with EDS is all caused by EDS. But I have gotten rid of most my symptoms associated with EDS. Most are simply diagnosed through the Brighton Criteria, as our geneticist said, their is no need for genetic testing. Also found out that Histamine Intolerance and Mast Cell Activation Syndrome is closely linked to EDS. And they believe that it's all caused by EDS... Not caused by anything else. They are never taught about the other causes of poor collagen production or the things that destroy collagen, one of them being Mast Cells and the chemicals they release. Chronic infections causes this, chronic infections also cause histamine intolerance, and MCAS. High Homocysteine (Homocystinuria) causes a glitch in collagen production and can also cause Marfan type features. Cortisol or Salicylates effect collagen production and can also cause Mast Cell activation. Copper is absolutely vital for the production of healthy collagen, but most women these days are severely deficient in copper. Due to poor diet and nutritional deficiencies you can become depleted in the copper binding protein Ceruloplasmin. This leads to a cellular deficiency along with a toxicity. Unused copper will accumulate in the body. This can actually throw your immune system out of balance causing a TH2 dominance... TH2 dominance equals MCAS! Estrogen rises with copper, estrogen also acts on Mast Cells. Yes there are a lot of dots we are connecting there!!! I am very much in the belief that those suffering from EDS type symptoms are likely dealing with an immune dysregulation and/or copper dysregulation.. The chemicals that Mast Cells release when activated can damage connective tissue and why symptoms gradually get worse and worse with time, and the pain is unbearable. You are basically a walking open wound. Viruses like EBV or Lymes Disease can trigger autoimmune disorders such a Lupus which manifest much like EDS. Mind you I KNOW that some people are genetically predisposed to EDS type symptoms. But I do believe the severity of those symptoms are based upon your nutritional status and your overall health status. I've witnessed this in myself and my daughter who has had severe hypermobility since birth. When she first began being mobile, she would get stuck in awkward positions. I was scared that I was going to dislocate her hips while changing her. And all those issues went away once I started supplementing while I was nursing her and it came back after I went off of folate for a period of time. You can read about this HERE. Mind you I have 4 kids now, my oldest is very hypermobile (boy) but getting much better, my 2nd child is not at all hypermobile (girl), my 3rd child is the one with the worst hypermobility (girl), my 4th has zero issues (boy), So I do know that genetics has a lot to do with this, and my 2nd definitely has her dad's genetics in many ways. She didn't get my horrible feet, or my horrible achilles tendons and inverted ankles or my hypermobile joints. Though I do know she has had histamine intolerance in the past, she has MRSA, and some kind of viral rash. So I know her immune burden is high, but she is NOT dealing with hypermobility! Mind you my 3rd was by far my most malnourished child and I know that plays in to it a lot. But my point is, YES EDS can be genetic, but not ALL of it is. There is still a lot that we can do to curb this condition. Be it lowering the immune burden and balancing or healing the immune system, or addressing nutritional deficiencies.
POTS (Postural Orthostatic Tachycardia Syndrome) and Dysautonomia
Then enters the picture..... Dysautonomia is an umbrella term used to describe any malfunction of the autonomic nervous system. POTS is one of those malfunctions and is heavily connected to EDS. I have no doubt I've dealt with POTS my entire life! I wasn't able to stand up without having to stop and bend over before I passed out. My heart felt like it was going to explode out of my chest from sudden movements. There was a time in which I almost completely blacked out while driving. There were times I had to take showers hunched over or sitting so I wouldn't black out. And since changing my diet, all these symptoms greatly diminished. When I went on a low histamine diet it did wonders! I'm convinced that increases in Dysautonomia symptoms is greatly induced by HIT and MCAD. In fact there are studies that show Sjogren's is closely linked to a defect in the production of the DAO enzyme whether it be gut related or genetic related is unknown. In studies POTS has been associated with MCAD (Mast Cell Activation Disorder.) Migraines are very common for those with POTS or any autonomic nervous system disorder. The other inclination of histamine being as issue, is because Saline IV therapy is so effective in treating POTS. Why? Because it dilutes the histamine in the body and why people develop migraines from getting dehydrated. But I do believe more than anything that POTS is related to electrolyte imbalances, potassium deficiency especially. Potassium deficiency is one of the hardest to detect, especially because doctors don't test Potassium correctly. Most Potassium in the body is found in the Red Blood Cell (RBC) but doctors only test serum Potassium. Potassium deficiency isn't usually caught until a person is in a crisis. Potassium is really hard to read in Hair Tissue Mineral Analysis as well. Potassium deficiency can be induced by a cellular malfunction in which Potassium isn't getting into the cells and is either hanging outside the cells going unused or being wasted in the urine. I have actually learned that Potassium was the game changer in my POTS symptoms and Histamine had only been a trigger.
I am always continuing to learn. I don't expect you to understand or agree with everything I have learned. And we are all so very unique! Our journey's are all unique to us. BUT I share my story so that others might be able to connect some dots for themselves, AND to give others hope. I come across many who don't like what I have to say, especially when it comes to EDS. Simply because they have been told their whole illness that there is no cure and it's genetic! BUT lots of people are healing from many of those symptoms.