Obviously it’s been awhile since I’ve posted an update on this diet. I’ve tried to drag myself to do it, but I just can’t write when I feel frazzled, stressed and uncertain about a topic. Thankfully time and good doctors have come to my aid to help me navigate some challenges we were having. Things got a little crazy in my house for a bit but we have a plan and I thought I’d share that with all those who care about how this diet has helped my family.
First of all, as I’ve stated earlier, I just want to repeat that this diet has done miracles for our daughter Eliah. However, there are some bumps that we are teasing out. And then with me, welI, I think the diet was my blessing and curse. It has shown me a genetic weakness that has been an underlying issue but it almost took me down as I discovered it. So comes the next stage of learning about healing and rebuilding the gut- the importance of the body’s ability to undergo METHYLATION. (read a little more on my home page category under MTHFR)
What exactly is methylation? I’m still learning about it but basically it’s how the body takes the food we eat and at a DNA level, the body decides how it transforms the food into enzymes the body and it’s cells can immediately use. For some of us lucky humans, we have a genetic glitch known as MTHFR. This “glitch” does not always express itself. Often it takes some sort of trauma to create the perfect storm to cause the expression of this gene. It’s a very complicated and confusing area in the study of epigenetics as to how this happens. For me, I know at least one contribution to this gene expression was the physical and emotional trauma I went through after a severe parasite infection in 2003. I think several other incidents in my life were other contributers that caused stress and physical exhaustion that also affected my body’s ability to methylate nutrients properly. Pregnancy was definitely another contributing factor. I’ll write a post later about how these things affect the MTHFR gene, but for now I just want to point out the expression of this gene mutation often has a multifactoral cause that usually takes time to manifest into the issues causes some medical concern.
So what does the MTHFR gene have to do with our body’s ability to methylate? Well a quick summary is “Basically an MTHFR gene mutation(s) thwarts the activation or conversion process in the folic acid metabolic pathway. Folic acid normally goes through 4 different conversion steps before it can actually become ‘active Methylfolate’, L-MTHF (or 5-MTHF) and be used by the body’s cells. And the MTHFR gene defect is responsible for hindering this process between steps 3 and 4. It can’t properly convert 5,10-Methylenetetrahydrofolate into L-Methylfolate. Instead, a person with an MTHFR gene defect has a mutated version of the MTHFR enzyme in their body that causes a lot of health problems.” (http://www.methyl-life.com/mthfr-and-methylation.html)
Yes that’s complicated. Basically your body gets deprived of some very important nutrients- B12, B6, usable folic acid to name a few. This lack of nutrient on a cellular level impairs a tremendous number of pathways that help the body to be able to heal, get rid of toxins, have proper immune system responses, have proper nutrient absorption, neurotransmitter function, etc. You can read a ton about this at mthfr.net. It’s a relatively new area of science that is really catching wave as many people, like me and my daughter, have chronic gut issues that have difficulties being resolved even with the healthiest of diets.
So how did the GAPS diet tear me down you might wonder? Well, it’s an incredibly intense detoxification diet. It is full of sulfur rich foods that aid in heavy metal chelation, yeast/fungus killing, bad bacteria rebalancing, etc. If you have this genetic mutation your body has a really hard time getting rid of toxic substances without proper help and the GAPS diet mobilizes and releases many toxic substances into your system to be excreted. The problem is, with this mutation, you have difficulty getting rid of the toxins. It’s like having a clogged drain. This is why after 10 years of various treatments I still test positive for bacteria growth, parasites and have an on-going, low-grade, mono viral infection (chronic fatigue symptoms), heavy metal toxicity, sleep issues, stress response issues and poor gut health. My body literally cannot “drain” the crap out it needs to, and it doesn’t have the nutrients available to give me the energy and neurotransmitters to properly handle stress and exertion. So on the GAPS diet, my stomach was digesting these foods but my body couldn’t handle the aftermath and I felt horrible- tired, weak, pain in my limbs, dizzy, flu-like. The first GAPS practitioner I was working with early on in my diet was well meaning, but she lacked the knowledge to recognize that my body was not just adjusting to the diet, but rather the diet needed to be modified to allow for this mutation. So does my body need the GAPS diet? Not quite yet….I have to get my methylation pathways opened first so my body can dump the bacteria, yeast, metals, toxins that the diet is designed to do. Even then, the GAPS diet will have to be modified to fit my particular body’s needs.
The other thing I’ve learned about this mutation is that it is very individualized. It can affect people in numerous ways. One specific way that it affects me (and I believe Eliah as well) is that I have a decreased ability to tolerate sulfur rich foods, specifically foods high in free-thiol sulfur (I have a homozygous CBS gene mutation as well which explains my sulfa drug allergy and sulfite intolerance). My new doctor and GAPS practitioner (which are amazing, check out: naturecuresclinic.com Dr. Nigh) put me on a low sulfur version of the GAPS diet for 1 week. It was amazing!!! The brain fog I had completely went away, I felt a new ability to focus and be emotionally present that I hadn’t felt in a long time. I knew then that too much sulfur affects how my body and brain function. The GAPS diet is so high in sulfur that I was drowning in it. For most people, sulfur rich foods are great. For me, these foods just clog up my system. Eliah also had much less mood swings, and greatly improved sleep on the low sulfur version of GAPS. So yes, I’m still doing mostly GAPS but more of a Paleo/Ketogenic diet version with less meat, less sulfur rich veggies, and lots of healthy fats to teach my body to burn energy from fats rather than carbohydrates. I am also trying small amounts of fermented GF oats on occasions since my sulfur free diet is so limited and it’s also important to keep meat consumption to a minimal with these genetic issues because it can affect ammonia levels with those who are CBS positive like me.
So my big beef with the Paleo Diet and the GAPS diet is that nowhere in these books does the author mention these complicating factors of the diet. There is nothing about MTHFR or CBS mutations. The irony is I think many people with this mutation are kind of people who end up looking for a gut healing diet like the GAPS/Paleo diets. It’s people who “just can’t heal no matter what they try” that are the one’s desperate enough to try this ridiculously hard diet in the first place. And I won’t go into much detail but autistic spectrum kiddos are one of the prime focus areas of the MTHFR research! It’s almost always prevalent in these kids. So the GAPS diet is largely for autism spectrum, and autism is highly linked to MTHFR. I sure hope people catch on to this coincidence soon and start to provide a diet/treatment plan that dovetails them together. Well, I will be one of those people. So stay in touch as I learn and hopefully find my path to healing by starting with my DNA.
As for Eliah, she’s still doing great, but this GAPS diet does affect her sleep and mood and causes bloating like crazy (the low sulfur version decreases her bloating and helps her mood). However, she has had her autistic spectrum diagnosis removed as she passed her last evaluation with flying colors. She has also had her hair disorder diagnosis removed (loose anagen syndrome) as her hair is now growing completely normal!!! The diet has helped her mental function tremendously, but I know she has a mild sulfur issue at the least and possibly has inherited her mama’s MTHFR gene. We shall soon learn more about her genes too.
(update July 2013) I now have all my DNA testing back- I am heterozygous for MTHFR A1298C, homozygous CBS 699T (darn it!), homozygous MTRR, heterozygous MAO A, MTHFR3, BHMT 2,4,8. If anyone is interested in the protocal I’m doing to treat these mutations feel free to ask. It’s a long road. Complicated too. The order of treatment is tricky- balancing gut problems, neurotransmitter imbalances, mineral/vitamin deficiencies and getting the methylation process going, and draining the excess sulfur and ammonia from my body.
I’ve ordered the “23andMe” testing for the rest of my family. I’ll post those results when we get them. I appreciate how the Yasco test simplifies the mutations so you can understand the results but am not sure the price was worth it yet. The other test is much cheaper!
I’m interested in talking with anyone with similar mutations and would love to learn what has helped.
So that’s an overview on our GAPS journey. It’s much more complicated than this but I’ll spare the details unless you are interested. I do want to say that I’m so grateful to have found GAPS diet, even though it has been hard. It has led us to see our true underlying issues and had we not done this diet we would not have found this hidden layer of healing.
If you are at all interested in learning about MTHFR and autistic spectrum issues, check out Amy Yasco’s work. She’s the pioneer in this field: dramyyasco.com and her book: Autism: Pathways to Recovery, The Puzzle of Autism, Genetic Bypass, and the Power of RNA
Also lots of info in general on MTHFR defects at: http://www.mthfr.net
Info on high free thiol sulfur foods:
Update 2015- I had no idea at the time of this post that I had chronic Lyme disease. So who knows how much of my issues with the diet were complicated by Lyme. And also I don’t feel genetics plays the big role I once felt at the time in illness. Nevertheless, sulfur intolerance is a huge issue and complicates many gut healing diets.