The Stomach Diaries Part IX: Seeing Stanford and my first colonic

August 1, 2019

The Stomach Diaries Part IX: Seeing Stanford and my first colonic

What getting the skin prick test looks like.

After my short stint with my Ayurvedic doctors, I went back to my nutritionist in Berkeley to see what in the world she thought I should do next. She said that my not being able to re-introduce new foods is so atypical, she suspects I have a gene mutation that prevents me from digesting food properly. She said she could send me to UCSF Medical Center or Stanford Health Care for further testing since they have access to more cutting edge technology. I chose to go to Stanford because it was more famous. There, I said it. I made my first appointment with a GI at Stanford in December.

MY FIRST APPOINTMENT AT STANFORD

After I summarized my symptoms and we went over my past bloodwork results, my GI said that he suspected my issues may have something to do with my liver since my liver consistently tested slightly out of normal range. I told him about my eczema since childhood, my bout with erythema nodosum, my achey joints, and my constantly cold hands and feet. He told me all of those symptoms sounded like something more in a rheumatologist’s wheelhouse (could be lupus and/or Raynaud’s?), so he referred me to see a rheumatologist at Stanford. He also referred me to see an OB/GYN since I had amenorrhea, at that time, for 3 years. He ordered a bunch of bloodwork for me to get done to catch him up to speed on the latest. What I like about Stanford Health Care is that they have doctors in all different departments (cardiologists, gastroenterologists, rheumatologists, allergists, endocrinologists, etc. etc.) and when you get treated within the Stanford family, all of your appointments, information, and results are updated in one convenient portal, so all your doctors are kept in the loop. In this way, the doctors work together to come to a diagnosis as a team.

My liver bloodwork came back normal this time which debunked any suspicions my GI had about my liver being the root cause of my issues. I got tested for SIBO which came back negative as well.

In February, I went to see an OB/GYN. No offense to the OB/GYN because I truly believe he’s skilled in what he does, but my visit with him was kind of a dead end because since my bloodwork read normal, he didn’t know what to do with me. I’m not exaggerating when I say my appointment lasted maybe 4 minutes. He told me he could order more bloodwork for me, but it would probably come back the same. He said he could write me a prescription for birth control, but that would only suppress my symptoms and perhaps even wreak more havoc on my system in the longterm. In the end—bless his heart because he sincerely didn’t know what to do with me—he actually offered me a complimentary Pap smear. Thanks buddy, but I’ll pass.

Fast forward to my first appointment with my rheumatologist in May. She was sweet, soft-spoken, and had a smile that reminded both me and my mom of Sandra Oh. I told her about gut issues and my cold hands and feet, eczema, dry skin, and experience with erythema nodosum. She tested my joints to see if I was hyper flexible. I’m slightly hyper flexible in my elbows and knees, but not in my fingers. I asked her about the possibility of Lyme disease because I know people who have had extreme gut issues that ended up being linked to Lyme. She didn’t deny that it couldn’t be Lyme, but said she suspected my issues were more autoimmune. She ordered me a bunch of bloodwork and we’d work from there.

FATIGUED TO THE MAX

A few days after my appointment with the rheumatologist, I went to LA with my dad. I felt amazing on that 4-day trip. My energy levels were high (I was out past 7 pm multiple days in a row which is unheard of for me!). When I came home, I was so tired. Flu-like. I felt like I got hit by a semi-trailer after falling off of a cliff. I spent the next week laying low, not exercising, getting acupuncture, drinking lots of tea, and going to sleep early. I started to feel better, but it’s now 2.5 months later and I still feel tired. I haven’t shaken that flu-like achey fatigue. I try to workout, but I don’t have stamina and I often end my workouts early. It’s hard to tell if I don’t have stamina because I haven’t been on a good workout routine or if I need to let my body rest. I’ll think I’m tired, so I’ll go to bed early, but then I won’t be able to sleep because I’m not tired! But I am! But I can’t sleep because I just don’t feel like it! I guess that’s what fatigue is: You feel tired, but you don’t feel like sleeping. Your muscles just feel like they weigh a ton and you don’t feel like moving yet you don’t feel like sleeping and your eyes are too tired to watch anything, so you just lie on your bed and listen to an audiobook or podcast or something.

COLONICS

One of my friends who was recently diagnosed with Lyme has been getting regular colonics and she encouraged me to try one. I figured it wouldn’t hurt, so in June, I got one. It felt good relieving a lot of gas, but I didn’t feel a dramatic difference afterward. Post-session, I didn’t even feel that tired like the hydrocolonic therapist said I might. I still got bloated after every meal. I still kind of felt the same. Maybe like 3% improved? It was hard to tell. But then again, I knew I couldn’t expect miracles after just one session. A week later, I got another colonic. I felt really tired and rundown afterward. I felt dizzy, nauseous, and so lightheaded, I’m surprised I made it home okay. I thought maybe I needed to eat. So I ate a light lunch, then felt awful. Food was NOT the answer. I was so bloated and had trouble breathing. I was nauseous beyond belief. I thought I was going to pass out, so I laid down. I wasn’t tired, so I just laid there, scared of what might happen. The next day, I felt better, but I still couldn’t 100% shake that tired feeling. Or maybe it wasn’t tiredness. I think it was more so fatigue. After my last experience, I’m not sure if the colonics are hurting my fragile system, so for now, I’ve stopped them. One good thing my hydrocolonic therapist turned me on to was pickled beets. She said I could try pickled beets with my daily sauerkraut to jazz things up a bit. I tried them for a few days and my body is okay with them! Huzzah, a new food! Never mind it’s more of an accoutrement and I only eat 1 Tbsp a day, but it just feels good to have a new flavor touch my taste buds.

TRYING AVOCADOS

In between my visits to Stanford, I had an appointment with my nutritionist to check in. She did another skin prick test on me and I tested positive to a lot of foods (though not as many as I did the first time 5 years ago!), but I also tested negative to a good amount of foods. I told my nutritionist about my low energy levels and she told me I needed to integrate more fat into my diet. Well, duh. I eat a mainly banana diet. She suggested since I seem like I’ve hit a good baseline, why don’t I try new foods? In the genres of protein and fat, in the past few years, I’ve tried bone broth, salmon, and ghee, and I got negative reactions from all of them. Since my body jams pretty well with fruit, she suggested I try avocados. I tested negative for avocados in the skin prick test. Avocados are a fruit AND a fat, so it would probably be the safest thing to try since my body seems to have a problem with animal fat. My nutritionist also told me to eliminate kefir and see how I feel because looking at my bloodwork results and seeing me and my symptoms in person, she highly suspects I have trouble digesting dairy—99% lactose free or not. I stopped drinking kefir (this means I now only eat bananas, raw cacao powder, apple cider vinegar, sauerkraut, pickled beets, lemon water, and tea) and I didn’t feel a dramatic difference, though I think my hands cleared up a little and I didn’t feel quite as bloated—though I still get bloated after every single meal. I think eliminating kefir helped, so as of June, I don’t have kefir anymore.

The Stomach Diaries Part IX: Seeing Stanford and my first colonic

My avocado cutting skills leave a lot to be desired, but this avocado was the most beautifully ripe specimen I couldn’t wait to try.

I was super excited to try avocados because as I remembered (it had been 5+ years since I had one!), I loved those beautiful green buttery babes. Back in the day when I was still getting stomach aches and bloating and yada yada yada nonstop but wasn’t aware of my gut issues, I used to have hummus, avocado, cucumber, and alfalfa sprout sandwiches. The first time I ever had that sandwich was at a cafe in San Francisco when I visited from Connecticut right before we moved to the Bay Area. From then on, I made them all the time for myself at home.

In late-June, I got an organic avocado from Whole Foods and patiently waited the three days it took to ripen. On day three, I cut it open and the way the knife slid smoothly into the buttery flesh, I could tell it was perfectly ripe. Yesssss. Taking a cue from my Ayurvedic doctors who warned me about trying too much of a new food too fast, I ate one bite of the avocado and called it a day. Let me tell you, that bite tasted AMAZING. Like beyond amazing. It softly melted in my mouth—an otherworldly experience. My body immediately craved more, but I didn’t want to overdo it, so I called it quits at one bite. I got zero reaction from the avocado. I tried it again the next day and by day 5, I had worked my way up to eating 1/4 of an avocado a day. It was a treat I looked forward to every day.

In those days, I noticed that I was getting more intense stomach aches than usual when I woke up each morning. My hands weren’t cracking, but I felt more heat building up inside, like they were primed to crack at any moment. I also felt more trapped air in my stomach that I could only release from intense self-abdominal massage and deep breathing—and even then, oftentimes the air was still stuck in my stomach. It was like not being able to satisfy a pesky itch. My nutritionist said I might at first feel adverse effects from the avocado because my body wouldn’t be used to the new food, but still, proceed with caution (aka don’t push it). I stopped eating the avocado and I didn’t feel any drastically better or worse. After a week, that feeling of trapped air in my stomach subsided. There was only one way to find out if the avocado was having a negative effect on me. Three weeks later, I tried three bites of an avocado. Man oh man it tasted delicious. I put some pickled beets and sauerkraut on top and I was in heaven. I didn’t have any stomach ache after trying the avocado, but the next morning, I woke up with terrible cramps in my stomach and my hands had developed small cracks. Later in the day, I felt that same feeling of trapped air in my stomach. The symptoms were back and worse than last time. IT WAS THE AVOCADO AFTER ALL. I had to stop eating it immediately. This was just a few days ago, so I’m still on my avocado detox. My hands have small cracks in them and my stomach is crampy, but I’m just happy I didn’t eat any more of the avocado lest I get a more severe reaction. I know in a week, I’ll feel better and in a few weeks, I’ll be back to my normal baseline.

The Stomach Diaries Part IX: Seeing Stanford and my first colonic

The last avocado I ate. I topped it with pickled beets and sauerkraut. Salty, tangy, buttery heaven.

FOLLOWING UP AT STANFORD

Yesterday, I went for my first follow-up appointment with my rheumatologist. We went over my bloodwork results. My ANA (an antibody associated with lupus) was slightly high, but so slight that she’s not 100% convinced I have lupus. A lot of the symptoms I describe are very un-lupus-like which furthers the argument that it’s not lupus. She said my sensitivities to food are so severe and atypical, she’s going to send me to an allergist at Stanford who has done extensive research on the gut microbiome. She’s also sending me to a dermatologist to get my eczema checked out and confirm that it is, in fact, eczema.

All of this basically leaves me back to square one with my diet—minus kefir and plus pickled beets. I’m super curious as to what this allergist has to say about my situation. I haven’t made an appointment with her yet, but I’m going to try to get in as soon as possible. On the fatigue note, I still haven’t been able to shake that flu-like feeling. Some days, I’ll feel better than other days. On a rare occasion, I’ll feel so energized, I’ll feel like I’m running on adderall. But mainly, I’m just trying to lay low and spend as much time at home as possible. My energy is limited and I need to conserve my spoons.

Feel free to leave a comment below if you’ve dealt with gut issues too—or any invisible illnesses (autoimmune/chronic/mental) for that matter. In talking openly about invisible illnesses, we not only de-stigmatize these issues, but are able to connect and bond with others who are in similar situations through this beautiful tool of the world wide web. No one is an island and I’ve gained so much insight and knowledge from your DMs, emails, and comments.

I filmed two videos about my gut issues. The first one is basically me talking about my history with digestive issues and the second one is a What I Eat in a Day video. I’m posting them to my YouTube channel in a few days, so be sure to subscribe to my channel to be notified of when the videos go live. I’m really excited to post these videos because it gives you the most accurate glimpse into my digestive issues without you actually being right next to me all day.

Check out the full Stomach Diaries series here.

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