Tag Archives: allergies

My Food Sensitivity History

I’ve had a complicated relationship with food since I was an infant that only increased as I got older. I now know that much of my food sensitivities were caused by my compounded heterozygous MTHFR gene mutations. Decreased ability to process folate and B12 from foods affects methylation and detoxification. This results in increased sensitivity to foods, drugs, and environmental stimuli. MTHFR gene mutations are often the root cause of Multiple Chemical Sensitivity.

My first major food sensitivity noticed by my mom was to cow’s milk. It would cause sinus drainage and excess phlegm. Cheese didn’t cause such a dramatic reaction but milk did. Unlike most children I didn’t grow up on cold cereal and glasses of milk. It improved as I got older, most likely because I had allergy shots from age 10 to age 22, but worsened in 2008. My 5 year anniversary gift from my job was an ice cream/sorbet maker. I spent months making and eating ice cream, most of it milk based. I started getting pain in my right side that worsened. Gallbladder issues were suspected but none of the tests showed gallbladder problems. In 2009 I finally connected the pain to dairy consumption and eliminated it from my diet. This July I reached the one year mark on the current round of allergy shots and my allergist assured me that the sinus issues from dairy should be resolved.  I started adding dairy back into my diet, mostly in the form of cheese, and it’s going okay. My sinuses do better with cooked dairy and I have to limit the amount I eat or the pain in my side returns but it’s not something I have to watch strictly. I still use coconut or almond milk as a milk substitute in most recipes and I doubt I’ll ever return to using milk or cream. Cheese, though, is much harder to substitute.

The second food I reacted to as a child was chocolate. At age 7 or 8, I ate too much and broke out in hives. I had to be very careful about the amount of chocolate I had until after the eight month course of Prednisone I was on in 2010-2011. Since then I haven’t had a problem with chocolate. At least one good thing came out of that drug experience.

My last childhood food sensitivity was to sugar. When I was around 10 we made doughnuts and I was dipping them in a confectioner’s sugar glaze, often licking my fingers. Before too long I had an asthma attack. Sensitivity to sugar is pretty common in my family. My dad gets stomach aches if he eats too much and my sister gets a horrible barking cough that kept her out of elementary school for a month. My tolerance level to sugar was fairly high and lemon juice was a good counteracting agent if I ate too much. Then in 2010 my hands would swell if I had sugar and I’d experience increased pain and  inflammation in joints I’ve damaged. I eliminated it from my diet. I tried to add it back in last year but the pain in my SI joints/hips increased and I felt like I was in a mini myalgia flare. Eliminating sugar again decreased the pain.

I didn’t have any major issues with other foods until after college. My first job after college was working at the salad bar of a grocery store. We were encouraged to sample the fruits we cut up to test for ripeness. By the end of the nine months I worked there I couldn’t eat any fruits or berries except lemons and bananas without my eyes swelling and itching, and breaking out in a rash. For awhile I couldn’t even touch acidic foods like pineapples or hot peppers. This lasted from 1996 to 2009. It took a couple more years before I was able to eat tomatoes again.

It’s still kind of a mystery why I reacted to the next foods. Starting in 2000 every time I ate pork I had terrible gastrointestinal issues. Bacon was the exception. Then in 2003 I had the same reaction to beef, elk, deer, wild boar, and buffalo. Originally we thought it was due to hormones but I reacted to wild game and organic meats, too. This reaction continued until 2010. With mitochondrial dysfunction there are sometimes issues with protein metabolism. Another possibility is my liver dysfunction decreased protein metabolism. Currently I’m okay with most forms of protein except canned legumes. Fresh, frozen, and dried are fine just not canned. The only thing I can think is that canning changes the protein structure of them in some way that my body can’t handle.

In 2010 after the worst of my myalgia flare was under control, I noticed inflammation reactions to more foods. I suspect the mold illness and dysregulation of inflammatory cytokines have a lot to do with it. Wheat/gluten and potatoes besides sugar made my hands swell so I eliminated them. Soy changed my menstrual cycles so I eliminated it. In 2012 before I started the supplement regime that helped my methylation errors, I tried Dr. Terry Wahls’ modified Paleo diet for autoimmune diseases. I saturated my system with too many leafy greens and peppers and got the same pain in my right side from them that I got from dairy. I eliminated them. This year I was slowly adding grains back into my diet after being on a grain free diet and noticed that I got an inflammation reaction from rice. It is now out of my diet. One the plus side, I was able to add potatoes, leafy greens, and peppers in moderation back in last year and my tolerance to sugar is a little higher than it was.

Looking back at all the foods I had to eliminate due to adverse reactions it’s not surprising I had nutrient deficiencies. Vitamins are obtained from food sources since the body can’t create them itself. I eliminated major sources of vitamin C and antioxidants (fruits & berries), B1 (pork & whole grains), B12 (red meat & dairy), and folate/folic acid (leafy greens & enriched wheat products). Even if I didn’t have MTHFR gene mutations, decreased microbes in my gut due to Prednisone and antibiotic use, and MSH deficiency from mold illness, I probably would have had nutrient deficiency issues, just not quite so severe as to cause Mitochondrial Dysautonomia.

Overall my food sensitivities have improved a great deal and there’s hope that once I’m completely healed from mold/biotoxin illness the rest of them will improve as well. In a later post I’ll discuss in more detail the various diets I’ve tried to improve my health, including rotation diets meant to avoid any further food sensitivities.

Mold and Me (part 4)

Integrative Medicine was unlike any medical specialty I had previous experience with. My first appointment was scheduled for 90 minutes. Follow up appointments were a standard 30 minutes but 45, 60, 75, and 90 minutes could be requested. I returned the huge packet of health information they sent weeks before my appointment so the doctor had a chance to get familiar with my medical history prior to seeing me.

We went over my immediate health issues and the test results from the nerve pain specialist and my last blood tests. I was given homework: an extensive medical and environmental history that included my parents health going back six months prior to my conception. My MD didn’t promise miracles but improved quality of life. Considering 99% of my time was spent lying on the couch if I wasn’t sleeping in bed, any improvement would be better than continuing to decline.

Based on my blood tests and Small Fiber Neuropathy, my MD took me off inactive cyanocobalamin (synthetic B12) and folic acid (synthetic folate) and put me on bioavailable methylcobalamin (methyl B12) and 5-MTHF folate (5-methyltetrahydrofolate). We started me out on a small dose since I didn’t react well to the synthetic vitamins and I slowly increased them over the course of six months to a year. She also recommended I read Terry Wahls’ website and books. Dr. Wahls is a family medicine MD who healed herself of secondary progressive MS using food. She’s now an Integrative/Functional Medicine doctor. I found her book “Minding My Mitochondria” especially helpful. Healing with food alone doesn’t work for me but there are great possibilities in it and her approach to diet from a scientific view is inspiring.

At my next appointment we went through my extensive medical history. My MD suspected that my dad’s tours in Vietnam played a part in my health issues along with my extensive antibiotic use and the mold and VOCs I’d been exposed to. Six months on Prednisone certainly didn’t help, either. She recommended in depth nutrient testing along with heavy metals and known toxins. The tests required blood, urine, and stool samples and were shipped to an independent lab. Results took about 6 weeks. I was also tested for the common chronic fatigue suspects: Lyme Disease and known viruses like Epstein-Barr and HHV6.

My virus and Lyme tests were negative but the other tests showed a lot of deficiencies and a few environmental toxins. I was in critical need of Alpha Lipoic Acid and Thiamin (B1) and had low levels of Vitamin C, Riboflavin (B2), Folate (B9), Cobalamin (B12), and Glutathione. My mitochondrial function wasn’t quite critical but wasn’t good, either. Neither was my toxin exposure (specifically styrene, aka plastics, and MTBE, a gasoline additive). My body’s ability to methylate was compromised and I had elevated levels of bacterial markers and borderline yeast/fungal markers. Out of the six beneficial gut bacteria they test for I was missing three.

The results gave us plenty of data to start treatment as well as a diagnosis of acquired Mitochondrial Dysautonomia. Besides supplements to improve the nutrient deficiencies, it was recommended I add more plant based antioxidants, probiotics, and Omega 3 fatty acids to my diet. I had to stop using Teflon cookware and, while freezing and storing food in plastics was okay, reheating wasn’t. MTBE was most likely in the water supply so I couldn’t eliminate it completely from my diet but by improving my methylation with supplements and diet I should be able to get it out of my body.

I spent months slowly adding and increasing supplements and reading all I could about methylation and mitochondrial dysfunction. I added Acetyl L-Carnitine to improve energy production and within 4 weeks my Spasdmic Dysphonia was gone as was most of my mental fatigue/brain fog. Six months after starting treatment my neuropathy and IH headaches had improved enough that I no longer needed pain medication. A year later I weaned myself off Nortriptyline. I got approval to add PQQ and CoQ10 and within a few weeks my fatigue had improved enough I could leave the house every 3 days instead of once a week if I was lucky. I got a prescription for 3mg of Low Dose Naltrexone and within a month my sleep had improved to the point that 85% of the time I awakened on my own before my 8:30am alarm went off. That has improved to 98% of the time within the last year.

I ordered a genotyping kit from 23andMe and, when the results were in, I used 23andYou to get the most out of my raw data. Isolating the methylation genes was particularly helpful to me. I had two heterozygous mutations in the MTHFR gene that greatly decreased my ability to obtain folate and B12 from food. Add that to the decreased bacteria in my gut from antibiotics and Prednisone and it was no wonder I got Mitochondrial Dysautonomia from nutrient deficiencies. I also had a COMT gene variant that affects the reuptake of dopamine and causes unstable moods. Treatment was either lots of green tea or the amino acid L-theanine. I added a new supplement to my daily regime.

Progress stalled and then went backward as I approached another summer. My health was much better but the debilitating fatigue was clinging on. I started allergy shots in July 2013 after learning I was allergic to a number of things that are very prominent in this area: grasses and filbert/hazelnut trees. I kept tweaking my supplement regime, increasing or adding things to get the best results. Progress had slowed to a crawl but I was still inching forward.

Two years after leaving the coast I learned that the basement I lived in 2011 had been infested with mold from a broken pipe in the wall under the closed in staircase. This revelation lead me to Dr. Ritchie Shoemaker’s books and website. My MD agreed to use me as a guinea pig for the treatment protocol. It’s meant lots of blood tests at out of town labs but again I had abnormal results, this time in inflammation biomarkers that no doctor thought to check. I have a HLA-DR haplotype that makes me particularly sensitive to chronic Lyme disease and to a lesser extent mold and other biotoxins. With mold/biotoxin illnesses the rule seems to be that the more exposure to them, the quicker one gets sicker. This certainly explains why my sophomore year in college I got so sick so fast after moving back into the moldy building I lived in my freshman year and why my health declined so quickly after I left my moldy apartment for an even moldier basement.

I’m at the last phase of the Shoemaker Protocol, lowering my Transforming Growth Factor Beta-1 and increasing my MSH, and finally this month I feel like there’s been a big breakthrough. Only time and more blood tests will tell if it’s from the mold protocol or from other changes I’ve recently made. I’ll discuss my multifaceted treatments further on in this blog. For now I’m very hopeful about the future. My health has improved immensely in a relatively short amount of time and an end to this dark, painful segment of my life is within sight.

 

Mold and Me (part 1)

Learning in September 2013 that the basement I lived in from November 2010 to September 2011 was teeming with hidden mold opened up a whole new avenue of treatments and health implications.

I’m not unfamiliar with mold. I grew up in a moldy trailer, went to a moldy school, lived in a flood damaged house, lived in a moldy dorm, and moved in 2010 to get out of a moldy apartment. I’d also been diagnosed with Sick Building Syndrome several times, an illness which now falls under the biotoxin umbrella of Mold/Biotoxin Illness. My entire life was spent in or around mold and biotoxins. It’s a credit to my admittedly faulty genes that I managed to partially recover from each major exposure until I was disabled in 2010 at age 36.

From infancy to age 10 I had allergies, asthma, food sensitivities, sleep issues, and fatigue. I had a lot of respiratory illnesses. My health improved after we moved into a new house and I started getting allergy shots. There’s a gap in my medical records for two years as I was healthy enough that I wasn’t seeing the doctor constantly. I even joined the volleyball team in middle school despite morning practices.

Then in October 1986 the first floor of our house flooded with five feet of water. My migraines started shortly after. It took nearly two years to get them under control with the help of a chiropractor who diagnosed me with inverted curvature of my neck. It’s a common whiplash injury but I’d never had whiplash. Spinal molding techniques and many chiropractic appointments eased my migraines and currently I average 2-3 a year. A visit to a chiropractor to pop my neck back into place eases them almost immediately.

In high school, I was diagnosed with chronic sinus issues that cleared up when I wasn’t in school. The school’s swimming pool exhaust fan was right next to the school’s fresh air intake vent. The chemicals from the pool circulated throughout the school. Poorly designed HVAC systems are a major source of biotoxins. On top of that, the school had a flat roof that was prone to leaking. It wasn’t unusual to see garbage cans in the first floor and second floor hallways during the winter, catching water that leaked through the roof and through the floor above. The presence of that much water means mold was growing unseen within the floors and walls. My doctors had no idea what to do about my inflamed sinuses so I was put on antibiotics for approximately 20 days a month, 9 months a year, for 4 years. Now many doctors recognize allergic sinusitis but in the late ’80’s- early ’90’s I was diagnosed with sinus infections, again often accompanied by respiratory issues, and given antibiotics.

I left the cool, dampness of the Alaskan coast for the desert of eastern Washington for college. We hoped the dry heat would be better for my health. It wasn’t. My dormitory was an older building that had the bathrooms/showers renovated over the summer. Soon after moving in my knees started hurting, swelling, and were hot to touch. Weather changes made it worse and I became a reliable barometer. The pain continued to get worse but an appointment with an orthopedic surgeon didn’t show any damage. By the end of the school year, I was on Tylenol 3 with codeine to control the pain and spent many days lying in bed in haze of pain and drugs. My health improved when I went home for the summer.

I moved into a different dormitory the next year and, while the knee pain wasn’t as severe that semester, I started getting sinus problems again. Appointments with ENT’s, multiple sinus x-rays, multiple courses of antibiotics, and even Prednisone barely helped. I went home for Winter Break and my health improved again. As soon as I returned to school, the sinus issues returned. It was another case of Sick Building Syndrome like I experienced in high school. I never learned what I was reacting to in that building but it was probably another poorly designed HVAC system. I moved back into the building I lived in my freshman year. That was a mistake.

Almost immediately the pain that started in my knees started spreading to other joints. At my worst, I couldn’t type because my hands/fingers hurt so much and I couldn’t chew solid food because of the pain in my jaws. I could barely walk and was living on strong NSAIDs and Percocet. A visit to a rheumatologist halfway across the state got me close to a diagnosis but her own health issues meant I never saw her again. I finished out my sophomore year with the understanding that if we couldn’t get my health under control, I wouldn’t be returning in the fall for my junior year.

Soon after my 21st birthday, I saw an Internal Medicine MD in Anchorage who took a look at my medical records, poked me in a few places, and proclaimed he knew what was wrong with me. I had Fibromyalgia. He explained that it was chronic pain condition caused by a sleep disorder. For some reason my body wasn’t getting stage 4 sleep on its own but with proper medication, lifestyle changes, and regular exercise I could control my symptoms. It took several months of trying medications before I found one that helped (cyclobenzaprine). The drug combined with a sleep schedule and walking almost daily pushed the pain and fatigue down to manageable levels. I finished out my college career in fairly good health and in off campus housing.