"I am not a writer, but I have a lot to say!"
"Those with chronic illnesses aren't faking being sick. They are faking being well." - author unknown
"It's important that we share our experiences with other people. Your story will heal you and your story will heal somebody else. When you tell your story, you free yourself and give other people permission to acknowledge their own story." Iyanla Vanzant
Hi, I am back! This is a long blog post, but it catches you up to date on my health journey!
Sharing my adoption story opened my eyes to the amount of stress that I have endured over the years. Truly, I was unaware of how much it was affecting me. I packed a lot of feelings away or told myself that my feelings were not valid. Constantly battling my thoughts on top of everyday stressors really did do damage on my physical and emotional health. I am a person who likes to have control, but I could not control my feelings about my adoption or even verbalize them. So, packing them away helped me (or so I thought). The one thing that I thought I could control was my eating habits and my exercise routine. I say “I thought I could control” because really, I did not have control. Our food industry in the United States is incredibly dangerous (more on that later).
So, lets continue with my gut issues. Last I told you my SIBO numbers were down. I was happy with this but not thrilled that after 8 months of constant bombardment of antibiotics and antimicrobials, I had not eradicated it. I still needed to find my root cause. Sadly, I had to go back on the antimicrobials for another six weeks. I knew this was going to be a challenge and that it would not be a quick fix, but I was feeling defeated.
The holidays were coming again. Yet again, I knew holiday food was going to be off limits. I was still eating a very small amount of food. No matter what I did, I just could not add many foods back into my diet. At this time oral thrush reared its ugly head…could this get any worse? Daily, I was still getting a lump in my throat and my ear hurt all the time. I was still losing hair and felt that I would be bald soon if things did not start changing. My area around my elbows hurt and my thumbs. Joint pain was a thing with all of this. Truly, I was a mess.
As this was all going on, I began a new job, and my first grandson was born. Life was still happening, and I still needed to move forward with it. Everyday I put on a smile and did my thing. Deep down I still felt like crawling into a ball to cry. It is incredibly draining to go through a chronic illness. One of the reasons I am writing this blog is to explain to people that what I am going through is a chronic illness and it is very dangerous. It is just not a quick conversation. Often, when I tell people I am not well, they always say “you do not look sick”, “if certain food bothers you, just don’t eat it”, or “just relax - you are just stressed out”. Over this “sickness” period, I have put on a good face. But for years leading up to this “sickness”, I saw my reflection in the mirror, and I did not like what I was seeing. I remember many people asking me “if I was tired”. I realize now that I have not been well for years and the added stress of my search and reunion was the tipping point.
I did not look like I was in constant pain or that I felt sick all the time. I have found that as a society, we understand when people have short, acute illness or if someone is injured but for people that have a long-term chronic illness, we have a hard time accepting it or know how to support the person. If we cannot visually see that one is ill, then it is hard for them to fathom that the illness is real. Believe me, being sick for such a long period of time is draining on the person going through it. Thoughts would run through my head and I had a hard time pushing them away. I felt like I had failed. I got up every day and went to work but I could not put 100% into my job. Being around people was so draining to me. It was getting harder and harder to play it off that I was okay.
Although I was limited on my food choices, I knew I still had to make some adjustments and take out certain foods. In all my research, I learned that gluten can be a huge issue. It could be one of the reasons why your intestines become “leaky”. I was nervous. I was not eating a lot of foods at this point with gluten but with my research I was very surprised at how many foods contained gluten. It seems to be in almost everything. I had been tested for Celiac Disease and I was negative, but I needed to make sure I was not adding in anything that could inflame my gut even more.
When I look back over the years before my “sickness”, I realize I had classic symptoms that something was not right. I would wake up feeling okay but as the day went on, I would get so bloated. I hated the way I felt all the time. As I began my research, gluten sensitivity just kept popping up. When I looked at the common symptoms of non-celiac gluten sensitivity, I knew I had most of them. According to Beyondceliac.org here are the symptoms: (Symptoms of Non-Celiac Gluten Sensitivity | BeyondCeliac.org)
1. Bloating, gas, abdominal pain (Yes)
2. Diarrhea or constipation (Yes)
3. Nausea
4. Headache (Yes)
5. Brain fog (Yes)
6. Joint pain (Yes)
7. Neuropathy
8. Fatigue (Yes)
9. Skin problems (Yes)
10. Depression (more like anxiety)
11. Anemia
After removing gluten completely from my diet, I did start to feel better. I began to put on weight again. I would say that I was about 75% better at this point. Something was still wrong, though. I could not get past that 75%. Still looking for the root cause, my naturopathic doctor did some more tests. My next test to be completed was the DUTCH test. This test measures your hormone metabolites from a urine sample. Not just estrogen and progesterone but also cortisol and melatonin and how it is processed through your body. My menstrual cycles had been off for years. One more thing my doctors told me was just my age. I had asked repeatedly for hormone testing, but they would not do it. I was getting to the age of menopause so they figured my hormones would be out of whack anyways. Just because we are getting older does not mean that we should not be concerned with how our hormones are working. We need to ensure that everything is working and being metabolized correctly. Do not ever allow age to be an excuse to why you are not feeling well. I took the test and found that my estrogen and progesterone levels did not have me near menopause, but I was making almost no testosterone. My adrenals were working fine but my liver was struggling with processing these hormones.
Through all this mess, I had been to a gynecologist and had a pelvic ultrasound and was put through a painful uterine biopsy and told I was fine. At the age of 50, I was being told I needed to go on the birth control pill for a year, then come off it and see if I am in menopause. Hmmmm…. really? Why would I put synthetic hormones into my body? My naturopathic doctor was the only one who wanted to address it. We began to address my liver and hormone issues.
Our bodies are constantly being bombarded with toxins all the time, more so than in any other time in history. We have chemicals and toxins in almost everything we use. There is no place that is safe from the chemicals and toxins. Our food supply is inundated with it too. Even organic food has some traces of chemicals because our soils are full of these harmful substances. All these chemicals and toxins must make its way through the liver. Depending on your toxin load and genetics determines how the liver moves these toxins throughout your body and excretes them. For me, my liver was sluggish, and my body was having a hard time excreting them out. More on that a little later. So, my next step in this process was to help my liver along and see what we could do about my hormones. I started two supplements. One was to support my liver and help it detox appropriately and the other was a superfood called Maca. Maca is a plant that grows in the Andes of Peru. Within a few months my cycles were back to normal. I was so happy! My mood improved because my hormones were not all over the place.
So, I felt like I had moved to 80% better for a little while. I was trying to add more foods into my diet and then I felt like I was going backwards again. I just did not get it. I began getting dyshidrotic eczema on the bottom of my feet. This type of eczema causes a blistering rash with intense itching. Once again, I was at wits end. I began bloating again and I was getting more episodes of the lump in my throat. I was feeling like I was never going to overcome this no matter what I did. It was always two steps forward and one step back. I would ask myself, “Why me? I am doing everything I possibly can to fix this, why am I not better?”. Some nights I would lay awake and just cry over my situation. There was always this nagging thought that if I did not get this under control, I was going to end up with esophageal cancer. The constant lump and pain were just daily reminders that something was not right, and it was going to invade my body more if I did not fix this. I started researching more.
I began researching dyshidrotic eczema and some causes. I found that certain foods can aggravate this condition. I was so confused. I had never had skin issues like this but decided to follow the recommendations that I found. I had already removed gluten from my diet but now I needed to eliminate dairy. Once again, I was not eating much dairy. By this point, I was making my own almond milk but occasionally, I would put some cheese on something. I mean I was starving all the time. I was afraid of food but when hunger took over, I would eat something fully knowing I would pay for it. Within 2 weeks of removing the dairy, I notice the eczema disappearing. The lump was still there. I was told repeatedly that this was from acid reflux.
On to more research! It is common in our society to associate acid reflux with too much acid production. Every time you turn on the television, you see commercials for antacids. We popped these pills like candy. News flash! Most acid reflux is from the production of too little acid or food sensitivities that cause inflammation or gas in the intestines. We need acid production for killing off bacteria, parasites, and digestion. When we take these antacids, we are shutting down our body’s defenses. The acid production in the stomach sets off a chain of events. In most people, when our stomachs hit a certain pH level, it triggers the lower esophageal sphincter (LES) to close. When we do not make the appropriate acid production, our LES will not shut, acid leaks back up into the esophagus, and then you experience acid reflux, heartburn, laryngopharyngeal reflux (LPR). LPR is what I was experiencing.
Many people drink apple cider vinegar to help with acid reflux. The belief is that by drinking the vinegar to alert the process in your stomach to close your LES because enough acid is available. Years before my “sickness” I had one month with a burning throat feeling after eating fish and chips along with a pineapple and Malibu drinks. I knew before drinking this that pineapple had been a problem in the past, but I ignored that and drank it anyways. It was my first night at the beach for the summer and I wanted to celebrate. I paid dearly for not listening to my body. I had so many warning signs over the years and I just was not listening. After a month of dealing with this burning throat, I took the plunge and drank the vinegar. Within 20 minutes, I was back to normal. I was shocked. With this new revelation, I drank vinegar everyday for about 4 months. When I stopped, I no longer had any issues or so I thought.
I tried the vinegar several times during my new “sickness” and it never helped, made me feel worse. I still was not understanding what was really going on with me, I decided to try betaine HCL. This is something that many people take who do not produce enough acid. The hydrochloric acid (HCL) is what your body produces. I recommend you do more research on this topic before starting it. I did my research and decided it was something I needed to try. You begin with small doses and see how you feel after. You must take it with food. You are waiting for this burn in your stomach to begin. You begin with a small dosage and wait, if you get no burn then the next time you increase the dosage. When you start to feel the warmth or burn, you back off. I did this for a few weeks, I was up to 8 pills per meal with no burn, but I still got the lump in my throat. I did not want to go higher with the pills. Since my goal was to get rid of the lump and that was not accomplished, I did not want to add any more pills into my already long list of pills if they were not helping. I came off them.
I did find that if I stuck to eating just meat but not highly seasoned, I felt my best. Many people with SIBO state they feel better on a straight carnivore diet. Although it did make me feel better, I just had such an issue restricting my food to just meat and it went against everything I believed in. I have always tried to eat more fruits and vegetables, but these things were my enemies now and it broke my heart. So, I stuck to eating meat for most of my meals. I cannot tell you how many times I had a good cry around mealtimes. It was so hard to see my family eat “normal” foods and not suffer. I remember one time my husband brought home a pizza and I was sitting there eating my bland chicken. I became so angry that I threw my plate against the cabinet and ran upstairs. I must admit this was not one of my best moments, but it does paint a picture of my emotional state over this ordeal. I went to my room and bawled my eyes out. It was just too much sometimes to sit there and deal with it. I love cooking but food had become my enemy and something I enjoyed so much before became an activity that I dreaded.
At my next appointment with my naturopathic doctor, we again discussing the need to find my root cause. I felt like I was slowly moving towards the way I felt before. It was decided to do another SIBO test, Organics Acid Test (OAT)/Mycotoxin’s test, and I needed to go back to the gastroenterologist. My anxiety went through the roof knowing I had to go back to the gastroenterologist. This meant a trip to my primary doctor to get the referral but luckily, I had changed doctors. My primary doctor agreed that I needed to see the gastroenterologist, but she still had no idea what SIBO really was. This is another reason I am writing this all down. My thought is when I see her the next time, I can refer her to this blog so she can get some education. I know it is not medical school literature but maybe if some doctors see what people with these types of conditions go through, then they will take the time to understand and do more of their own research.
My tests came in the mail. These tests were meant to be taken at home then mailed back for results. The SIBO test was easy. I had done that two times before, so I felt like an old pro. The OAT/Mycotoxin test is a urine test that measures the chemical compounds that are products of metabolism excreted through our urine. I had been telling my naturopathic doctor that I really thought mold could be an issue with me since I had worked in a moldy environment. The OAT’s portion was going to give me a snapshot of my overall health and evaluates yeast and bacteria in the intestine. It also has markers to look at vitamin and mineral deficiencies and neurotransmitter levels. The mycotoxin test looks at metabolites produced by fungi and mold. These mycotoxins are usually airborne from living and working in moldy environments, but food can also be a source of these mycotoxins. There is a long list of diseases and symptoms that are associated with mycotoxin exposure. A quick pee in a cup first thing in the morning was all I had to do for these tests. I mailed my tests off. Now to wait the few weeks to get the results.
Well, a few weeks later I had my answers. Once again, SIBO was back with a vengeance. Insert crying emoji. I had to go on more antimicrobials. My naturopathic doctor also recommended that when I saw my GI doctor, I should ask for both antibiotics: neomycin and rifaximin. From previous experiences with this GI doctor, I knew how that conversation was going to go. I decided to start taking another antimicrobial, so that I could at least start fighting this fight again. Next my OAT/Mycotoxin test was discussed with me. BOOM! I had mold toxicity. I do not have a mold allergy, but I am not able to process the mycotoxins, that mold creates, out of my body. My levels for Ochratoxin A in the Aspergillus group were high and had to be addressed. This diagnosis did validate what I had believed to be a problem for years. My moldy work environment had completely poisoned me and caused many of my health problems.
"Ochratoxin A (OTA) is a nephrotoxic, immunotoxic, and carcinogenic mycotoxin. This chemical is produced by molds in the Aspergillus and Penicillium families. Exposure is primarily through contaminated foods such as cereals, grape juices, dairy, spices, wine, dried vine fruit, and coffee. Exposure to OTA can also come from inhalation exposure in water-damaged buildings. OTA can lead to kidney disease and adverse neurological effects. Studies have shown that OTA can cause significant oxidative damage to multiple brain regions and the kidneys. Dopamine levels in the brain of mice have been shown to be decreased after exposure to OTA." - MycoTOX Profile - Mycotoxin / Mold Test — The Great Plains Laboratory, Inc.
My doctor explained that this is, once again, another chicken and egg scenario. Did the moldy environment cause my body to be in distress or did my poor health not allow my body to detox the mold appropriately? I suppose we will never know but what I do know is that 25% of the population has the genetic predisposition to not detox mold appropriately. As that I have the MTHFR mutated gene (another post will come about this), my methylation cycle is not in the best shape. Detoxing mold is difficult for me. I needed help.
Quick note on the methylation process: Methylation performs multiple roles in your body.
Balance’s hormones
Control’s inflammation
Balances Mood
Promotes Detoxification
Produces Glutathione
Produces Neurotransmitters
Usually, people with this genetic predisposition have trouble with Phase II of their livers detoxification process which is where toxins are broken down for excretion. Please be aware, even if you do not have this mutation, your toxic load still can become too much and overload your liver. I had already been placed on special vitamins for the MTHFR mutation. This mutation affects how folic acid and B vitamins are processed through the body. The vitamins for this condition have bioavailable form of folate – methyl-folate which the body can absorb. I told you that the issues behind this SIBO thing were complex. And this explains why my liver was so sluggish.
Now for the treatment plan…. not only do I have to treat my SIBO, but I also have whole other issue to be tackling. Mycotoxins are a fungal toxin. They are toxic chemicals made from fungi. Although fungi do not need these mycotoxins to live, they do offer a survival benefit. For humans and animals, these mycotoxins can be hazardous. I found out the hard way. It is going to be a long haul to treat. This is not just a few pills, and I am fixed. It is a time-consuming process. This requires sweat days and non-sweat days. It is daily regiments of supplements and binders. This requires you to have knowledge of your detox pathways too. I learned that your body excretes these toxins out a few different ways. One of these pathways is through bowel movements. You must be going to the bathroom regularly while you are detoxing. I am taking a charcoal binder to absorb the mycotoxins and move it through my digestive tract to excrete it out. You must drink a ton of water because urinating is another pathway. I was taking a few other supplements to help with my liver detox pathways. On my sweat days, another pathway, I must take liposomal glutathione 30 minutes before a sweat session. My sweat sessions are either in an infrared sauna or an extremely hot bath. Once I am done, I must take more liposomal glutathione. On my non-sweat days, I must take NAC (N-Acetyl Cysteine) to assist my liver with detoxification but also to break down the biofilms that surround the bacteria and candida in my gut. I am told this process could take a up to a year. If I am still being exposed to mold, I will never get ahead of the issue.
Off to the GI doctor I go! I was able to secure an appointment in the civilian world and not the military. I was happy and nervous because I had no idea what I was going to be getting myself into. My first appointment was the middle of December. Convincing the clinic to allow my husband to attend the appointment was a victory since COVID restrictions were controlling how many people could be in the clinic. I was surprised that the doctor listened to me. I am not sure if he understood me, but he took notes. His biggest concern was the esophagus. Since I had ongoing reflux for two years and with a family history, he said I needed another endoscopy right away. He made an appointment for two days before Christmas and told me that I would be getting the area that was concerning from my last endoscopy lasered off. I wanted this over with… I was a nervous wreck. I asked him for the antibiotics. No antibiotics for me. He said he would do some research on the information I had presented him, and he would get back to me. Here we go again.
I woke up from the procedure and I felt pretty good. I was not in pain and he said he did not see anything unusual. He lasered the area near my LES and said that my biopsy results would be back in two weeks. I was exhausted. I asked again for the antibiotics and he told me I did not need them. I was not going to argue with him. I got what I needed from him…. the endoscopy. I knew I would make no headway with the SIBO and mold. About two hours after the procedure, I started to have pain whenever I swallowed. I could not get food down. He had lasered that area of my esophagus, so I thought I would just drink some Elemental shakes for the night. This is a mixture that I had received by prescription from my naturopathic doctor earlier on because I was not eating much food and needed more nutrients. Basically, it is what people use for tube feeding. I could not sleep. If I rolled over, I would send my esophagus into spasms. I could not take any meds because of the pain when I swallowed. I spent a week drinking these shakes until I could tolerate more than a liquid diet. I was never told that this would be a side effect to the lasering, and I was mad. I spent my third Christmas with this “sickness” drinking shakes. I went in two weeks later and I was told there was no signs of Barrett’s esophagus. I felt like I had won the lottery. I had more time to figure this mess out without having to worry about that issue, as well. My report did show signs of chronic gastritis and inflammation of the esophagus.
I treated the SIBO for another 8 weeks, but I still did not feel better. My naturopathic doctor suggested we do a food intolerance test and I wanted to rule out SIBO due to an autoimmune issue from food poisoning. The IBS Smart Test looks for the antibodies to determine if SIBO is due to this condition. I can not recall ever having food poisoning, but it was just one more box to check. I had the tests mailed to me. A very painful stab to the finger and I completed the tests. There are mixed reviews on doing food sensitivity tests. Some say you will not get accurate results if you have leaky gut because most molecules will make it through the intestinal lining and cause an immune reaction. I had nothing to lose and everything to gain at this point.
A few weeks later, I had my answers. No autoimmune issue due to food poisoning. Yay me! I had so many food intolerances. Yes, a lot of them were ones that I had been avoiding because I knew they caused issues but some I was surprised about. It did confirm my intolerance to oregano, and this is probably why I was having so many issues taking the oregano oil as a treatment. I did find my intolerance to yeast surprising. I knew I had yeast overgrowth but there is a probiotic called saccharomyces boulardii that is a great for SIBO. I had been taking it for a while because my microbiome was ruined with all the antibiotics and antimicrobials. I was told if I had a yeast intolerance that this type of yeast would not affect me negatively. Well, I still had oral thrush, fungal infection on one of my toenails, and my hair was still falling out. I decided to stop this probiotic. Within two weeks, my hair stopped falling out and my toenail started to look better. I am still battling the oral thrush. I am not saying that this probiotic is not a good one. I truly believe it is a great product. My husband and daughter have both had success with it. That is another whole blog post. For me, it was something I had to take off the table.
As for the food intolerances, wow is all I can say. I removed the foods on the list. Depending on what type of reaction the test showed determines if I need to cut the food out for 1-2 months or 3-6 months. I have seen a difference in how frequent the lump in my throat, bloating, and ear pain appears. Most people ask me, “If a food bothers you, why don’t you stay away from it?” Good question! The answer is “some foods don’t affect me for at least 24 hours”. It is extremely difficult to pinpoint exactly what is bothering me. Even with a food journal, I still could not narrow it down. I am starting with a nutritionist, who is very versed in the topic of SIBO, soon to help me navigate this! I truly hope I can get the help. You see there are diets for SIBO, acid reflux, autoimmune, candida/mold, etc. What is good/allowed for one, may not be good or allowed in the other. It has been a nightmare navigating this whole ordeal.
At this point, I have brought you up to present day in my life of gut issues. I am still fighting the fight. Some days are more of a struggle than others. My year in pajamas certainly has given me some much-needed social peace. Although COVID quarantine has not been ideal for most, it was a blessing in disguise for me. I have used the time to work on me. Through self-reflection, self-care, and rest, I feel I am in a better place than I was a year ago. I have learned to say no. I want to continue my conversations in this blog space to really educate people on the things that I have learned along the way. I will dive deeper into some of the topics I have presented and into some of my earlier health issues I faced, so you can see the accumulation of problems that presented before I knew I was sick. We all need to listen to our bodies. You only have one body, so be good to it! After meeting with my nutritionist, I hope to have more insight on other possible treatments and some more ideas to figure out why I have recurrences. My family has been through a lot in the last 5 or so years with new family dynamics (more to come on this) and my health issues.
I have been posting about some recipes that I have tested out on my Instagram page. I want to share some no refined sugar, gluten, and dairy free recipes that I have made. One does not have to have these dietary restrictions to enjoy them.
Instagram: @theyeariworepajamas
Live Healthy, Live Happy!
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