Updated: Apr 28
For those of you that know me, you're probably aware that I've been vegan since 2015. It started due to a mix of things that all seemed to happen at the same time.
One night, I was watching YouTube fitness videos, and it was "suggested" to me by YouTube that I watch "Vegucated"; a documentary about plant-based athletes. There was a small section about animal ag that barely displayed a fraction of what really goes on, and I knew I could never purchase another animal-based product again. But, there was still cheese, chicken, whey products and leather in my home. I wasn't sure what I was going to do with those items, but I was firm on the idea of never making a new purchase.
Shortly after, I was diagnosed with Thyroid Cancer. It was finals week for me as a Math Major at Palomar College. I was taking 19 units; more than half of those came from the 3 math classes I was in. I was also working part time as a server, then later a chef. Stress was an understatement.
I had just applied to transfer to Cal State San Marcus and was accepted. I attended orientation, signed up for my classes, and suddenly everything was about to change.
At the time, I didn't know much about the thyroid gland, but I knew the word "cancer"; I had already lost a few family members to different forms of it. So, in addition to all of the schooling I was in, I started heavy research on anything and everything I could possibly do to potentially stop or slow the growth of the cancer cells I had in my body.
I came across the WFPB (Whole Food Plant Based) "diet"; I use this word lightly because on one hand "diet" can simply mean "a way of living", but others often associate it with weight-loss. I wasn't in this to shred some pounds; I was in it for a lifestyle change. In these studies, I also found a correlation between high acid foods (meat and dairy) and the growth of cancer cells.
Since I had already adopted the ethics of veganism, cutting out any of the "accidently vegan, but not so healthy" foods was easy (Oreos, French fries, processed foods, etc). I started reading multiple studies on the effect of acidic foods on the body; especially in relationship with cancer cell growth. I was thoroughly convinced.
Thankfully, after having a partial thyroidectomy, my cancer has been cured. I visit my endocrinologist annually, and I haven't had any recurrence symptoms since, YAY!
That was in 2016.
Since then, I've definitely added my slue of processed vegan junk to my diet, because, well, everyone craves a cheat meal, but over some time, I started noticing other symptoms pop up; bloating was the biggest one, followed by increased environmental allergies, and what seemed to be the result of an unhealthy immune system. There's no way it could be the vegan diet; not after all the research I'd done, combined with the numerous doctors I had interviewed on my podcast. It had to be something else.
I was tested for a gluten intolerance sometime in 2017, and it came up negative. Later, in 2019, I was tested for SIBO (Small Intestinal Bacterial Overgrowth). It came up positive.
After reading blogs, listening to podcasts, and watching YouTube videos from those who had suffered from SIBO, I learned it was extremely hard to deal with on a vegan diet, and nearly impossible to cure. It also has a high reoccurrence rate, and many suggested you couldn't survive as a vegan, but due to my ethics, I was convinced there was another way.
The reason eating vegan with SIBO is so hard is because the bacteria thrive off of carbs, which, most vegan diets are full of. There are antibiotics to treat it, but they're really expensive, and at this time, weren't seen as a viable treatment for SIBO by the FDA, so they weren't covered by insurance. In fact, they were so hard to get, even my doctor refused to prescribe them! But, I'm resourceful, so I found a way.
Keeping others anonymous, I reached out to a few of my vegan doctor friends and asked if someone could prescribe me. I got a "yes". After months and months of expensive tests and doctor visits, I finally had some relief! The antibiotics prescribed were Xifaxan and Clindamycin.
In December of 2019, I happily ran over to my nearest CVS with some sort of relief on the horizon, just to be notified that my insurance didn't cover it (due to the denial that these medications worked for SIBO). The Xifaxan was $2800 out of pocket.
I reached out to my doctor friend and asked him if he was willing to resubmit the prescription for another "approved" disorder. We found that prescribing them for IBS would work in 2020, under new laws. Since it was December, I waited it out, then went back to CVS in January just to find that insurance denied it again. What the hell could it be now? I was suffering and needed some major relief!
I have a friend who works for SHARP (my insurance) and was able to get into my medical files and read why insurance had denied me, yet again. She mentioned it was because of the cost of the pills, and that if I were to request CVS only fill half of my prescription, I could pay the copay, and should be fine. Then, once I was almost done with them, I could go back and request the other half, which I may or may not half to pay out of pocket for. On one hand, this could be extremely compromising to my immune system; especially if I wasn't able to complete the whole antibiotic regimen, but, on the other hand, what else did I have as an option? It was worth a shot.
Thankfully, it worked. But, after 14 long days, I saw no relief. I was so discouraged, and soon discovered I may just have to live with a dissented stomach forever.
I started doing more research on "false positives" and similar symptoms of SIBO and other conditions. I came across CSID (Congenital Sucrase Iso-maltase Deficiency). Basically, it's when the body doesn't have the enzymes to break down sugar. Any sugar.
This was more devastating than SIBO. The testing hadn't even been done in San Diego yet, and the food limitations were horrendous. No bread. No fruit. No beans. No starch. And, with my already vegan diet, no eggs, meat or dairy either. What was left?? How was I going to live?
After being on a waiting list for testing, San Diego made it possible. I was only the second person in the county to receive this. It was an endoscopic procedure that involved scraping the insides of my guts to see if I had the essential enzymes. I felt violated and frustrated, but I had some hope there would be some sort of diagnosis.
Months went by and I heard nothing. I assumed it came up negative. Then, after a checkup with my gastroenterologist, I learned I tested positive. Shit.
On one hand, I was grateful to have a positive diagnosis so a new diet regimen could start, but on the other hand, what the hell was I going to eat?? He mentioned that only .2% (yes, point two percent) of Americans had been diagnosed, and there hadn't been that many studies regarding a cure. He recommended a prescription called Sucraid, but stated it didn't seem to work too well. I was only one of 3 patients of the thousands he sees monthly, that he had ever diagnosed in his 20 years of practice. I've always wanted to be unique, but not in this way.
How was it caused? What was I supposed to do. What could I eat? I had so many questions.
The "C" in CSID stands for Congenital; or at birth. It was of some relief that I was born with it, and it wasn't something I had done to myself in the midst of my bad habits in my 20's. But, who cares where it came from, what the hell happens next??
I kept my diet the same (vegan, but including processed foods), and took the Sucraid with no relief. I just assumed I was always going to look pregnant, and learned to accept it.
Fast-forwarding a few months to these COVID times, I had more time on my hands for research and meal prepping. I invested in a juicer and started doing an elimination diet. Since the CSID diet was soooooo limiting, I figured I'd start by eliminating alcohol and grains first, to see if I noticed some relief. But, maybe the gluten and SIBO tests were false-positives? Either way, my thought was that the juice was already broken down, so I could potentially handle some fruits that way.
I started noticing some weight loss and a bit less gut pain. As an experiment, I made homemade pasta (with gluten) to see if I noticed it come back. Right away, bloating. Like, huge, gassy, 6 months pregnant bloating. I knew I had to at least cut gluten out. Unfortunately, it took a few days for it to subside, but it went down dramatically.
I later learned that people with gluten-type reactions can have symptoms for days, weeks, or even months after consuming it. In addition, coffee can act as a reactor to gluten, which makes symptoms worse after consuming them together. I cut coffee out too, and, with a major headache... I'm waiting.
At this point, about 6 months after the original SIBO diagnosis, I've had over 10 primary care doctor visits on this issue, combined with multiple abdominal ultrasounds, endoscopies, a colonoscopy and a few specialist visits. I felt so defeated (and slightly violated).
As of today, I'm only 5 days into my "cleanse" (including the day I ate pasta), so I'm starting over again. This time, no gluten, no coffee. If the symptoms haven't completely vacated, I plan to cut out fruits next to see what happens. I found a lot of info at https://www.csidcares.org/ including a diet plan for those suffering. It's extremely limiting; it's basically a gluten-free diet (plus my veganism), combined with the elimination of all starches and most fruits. Basically, I can only eat green leafy vegetables, and a few varieties of fruit. I was also just informed that most CSID patients can't handle nuts either. AH!
For someone like me who loves to cook, it's horrendous, but manageable. There definitely won't be any more going out to eat, having mixed cocktails or accepting Instagram food collaborations in my near future, but I'm willing to do anything to get rid of this bloating, so here we go!
It seems the symptoms of CSID could minimize or even diminish over time as the gut heals, while following this strict diet, so we'll see. I'll update you guys in a few weeks, but for now, I'm following the Vegan, Gluten-Free, SIBO, CSID Diet.
Update: On 4/27 I ate a handful of peanuts. Major reaction! I'm not sure if it's because peanuts are technically legumes, rather than nuts, or if all nuts are problematic, but no peanuts for now!