Let’s return to my adventures in functional medicine, to which I turned after years of chronic sore throat that became dramatically worse in September 2020, and ENT appointments and an upper endoscopy did not help.
First, I want to reiterate that I am frustrated by and skeptical of medicine in general for various reasons. It drives me over the edge that Western medicine takes patients in fifteen-minute increments and that nothing is done to find the cause of the illness, only to treat the symptoms. It’s just completely and utterly the wrong approach to healing someone and giving them a better quality of life.
Second, while functional medicine does try to find the root cause, those offices often don’t take insurance, making that kind of care prohibitive for most people.
Third, so much of chronic illness is unknown/disbelieved/underfunded/unresearched. It can’t be addressed in fifteen-minute increments. But just because there isn’t research to back something up, it doesn’t mean it isn’t real. It just means the research hasn’t been done.
The first time I went to a functional medicine doctor was in the summer of 2018. I was shocked by a positive result on my celiac disease blood panel. I removed gluten from my diet and looked forward to how I might feel. Many people experience a nearly miraculous improvement. Perhaps the fatigue and muscle and joint pain wasn’t all CP-related? But no, I didn’t feel any great difference. (The gastroenterologist took me more seriously in 2021 when he looked back at my original TTG Ab,IgA result of >250, the highest he had seen, he said.)
This time, with my new, local functional medicine practice, after all my intake forms and one appointment each with the nutritionist and the doctor, the doctor was pretty sure I have CIRS.
CIRS stands for Chronic Inflammatory Response Syndrome, but many doctors aren’t trained in diagnosing it (and therefore don’t think it’s a thing). CIRS is also called Mold Biotoxin Illness. Around 25% of the US population have the genes that put them at risk of developing CIRS if brought into contact with mold. From Moldy to Healthy (.com), CIRS “happens when two things occur — there is an exposure to a biotoxin, like mold, or a Lyme tick (those are the most common), or eating reef fish contaminated with Ciguatera toxin, as well as a couple more. Combined with a genetic susceptibility to being unable to clear the toxin, the body’s inflammatory response can’t shut off. This chronic inflammation impacts multiple other systems in the body, causing dysregulation everywhere.”
From National Integrated Health Associates:
“Chronic Inflammatory Response Syndrome (CIRS) is a collection of symptoms which is also sometimes referred to as Biotoxin Illness, or Mold Illness, and was initially thought to be caused by mold exposure only. However, further research indicates bacteria, fungus, and various viral infections are also implicated in the development of Chronic Inflammatory Response Syndrome.
It is quite a dilemma for both patients and physicians in dealing with such a complex illness as CIRS, which overlaps and can mimic symptoms associated with other conditions such as Lyme Disease, Ehrlichiosis and some autoimmune disorders. CIRS may often be misdiagnosed, or underdiagnosed.”
So, do I truly have tons of toxins built up in my body, causing chronic inflammation and all sorts of seemingly unrelated symptoms?
The problem is that I live in a very dry environment, where mold seems unlikely. However, mold isn’t always visible or odorous. If I’m genetically predisposed, maybe my house doesn’t have a big problem, just a big problem for me. My symptoms have gotten worse since the pandemic. Perhaps my anxiety and inability to focus and my exhaustion aren’t all because of the pandemic itself, but because I have been sheltering in my house. The pain and weakness in my fingers, hands, wrists, that I went to months of PT for–maybe it’s not from using trekking poles. It started after I began sheltering in place and wasn’t using my trekking poles at all.
Further, the mold isn’t necessarily coming from my environment. I suppose I was naive to think that food we buy in the grocery store is free of mold unless visibly moldy. It turns out that many foods, especially long-traveling foods like grains can have molds that then produce high levels of mycotoxins. See this peer-reviewed chapter, “Mycotoxins: The Hidden Danger in Foods.”
I want so much to have clear answers, to have clear next steps. I have results from a mycotoxin urine test that seem to confirm that I do indeed have high levels of toxins. Normal levels of citrinin are less than 25 (units unclear). My result was 790. Yikes, right? That certainly sounds bad.
According to the information included with my results from The Great Plains Laboratory, Inc., “Citrinin (Dihydrocitrinone DHC) is a mycotoxin that is produced by the mold genera Aspergillus, Penicillium, and Monascus. CTN exposure can lead to nephropathy, because of its ability to increase permeability of mitochondrial membranes in the kidneys. The three most common exposure routes are through ingestion, inhalation, and skin contact. CTN has been shown to be carcinogenic in rat studies. Multiple studies have linked CTN exposure to a suppression of the immune response.”
So citrinin is carcinogenic and can suppress the immune response. What else? Authors of an article in the journal Foods state, “Citrinin (CIT) deserves attention due to its known toxic effects in mammalian species and its widespread occurrence in food commodities, often along with ochratoxin A, another nephrotoxic mycotoxin. Human exposure, a key element in assessing risk related to food contaminants, depends upon mycotoxin contamination levels in food and on food consumption.”
Which foods have high levels of citrinin? According to an article from the Journal of Plant Pathology & Microbiology, “Citrinin has mainly been found in rice, wheat, flour, barley, maize, rye, oats, peanuts and fruit.” Guess what vegans eat a lot of? It doesn’t seem coincidental that three of the top foods I keep coming across in my search for citrinin information are wheat, barley, and rye. Those are also the three foods that contain gluten. Is there a connection between mycotoxins and gluten intolerance? I did find a doctor who believes so. But of course, I can find anything on the internet. Celiac disease can develop at any time in the lifespan, and although I only miss bread occasionally, it would have been really great if my celiac gene had never expressed itself. Even though I’ve adapted well to a gluten-free diet over the last three years, I eat large amounts of the other foods on the citrinin list: rice, oats, fruit. Often all of them every day!
I want to know what to do next. How to get my house (and car) tested for mold. How to get it remediated and then tested again by reputable companies. Whether or not to believe my mycotoxin test results. (In the course of doing research, I found a doctor who said not to believe urine tests.) How to change my diet if the toxic load is through ingestion. How to detox my body.
The good news is that CIRS is treatable. The bad news is that it’s not a simple process, but a potentially years-long one. I can’t find any definitive information. All that I’ve cited here is a result of my own research and not from my doctor. Most of what I’ve found is from functional/integrative medicine, and some of it is conflicting.
Again, same as with the celiac diagnosis, I feel a glimmer of hope that some of what I’m experiencing is in fact NOT related to cerebral palsy. Hope that there are steps I can take to help myself feel different, better. More energy, less pain. A slowing of this alarming decline. Is it possible?
Informal Works Cited:
Cinar, Aycan and Elif Onbaşı. 2019. “Mycotoxins: The Hidden Danger in Foods.” DOI: 10.5772/intechopen.89001
“Citrinin in Foods and Supplements: A Review of Occurrence and Analytical Methodologies.” Foods. 2021 Jan; 10(1): 14. Published online 2020 Dec 23. doi: 10.3390/foods10010014
Doughari, J. 2015. Plant Pathol Microbiol, 6:11. DOI: 10.4172/2157-7471.1000321
Dr. Jellison, Functional and Integrative Medicine
Dr. Kim Crawford, Internal Medicine/Functional Medicine
Merritt Wellness Center, Moldy to Healthy
http://moldytohealthy.com/2020/07/19/what-did-50-doctors-miss-and-what-is-cirs/
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