Update from my recent visit to the nephrology clinic.
I recently had a follow-up appointment with my nephrologist at the VA hospital here in Florida. Overall things are good (yay!), but the long and the short of it is that I need to eat more food and drink less water. I’m so used to being told I’m dehydrated that this was definitely new advice for me! My sodium and potassium levels were just a little below normal, but other lab values indicated I’m over hydrated, which would dilute the sodium and potassium in my body. I think I’ve been overcompensating for the (many) times when I’ve gone to the doctor in the past or the ER, only to have them tell me I’m dehydrated. Finding my optimal level of hydration seems to be harder than it sounds, but I’ll keep working at it!
More specifically, my nephrologist told me to eat a sandwich with my meal-replacement shake — more food, less fluids. 🙂 So I picked up a few things at the store. It’s not quite a sandwich, but I feel like bagels and pita bread are sandwich adjacent! I got spinach to start blending into my meal-replacement shakes and picked up some banana chips to eat more frequently to help keep my potassium up. Even though I love food, when it comes to storing and prepping it, I tend to forget and anything fresh goes rotten before I get a chance to eat it (hence the reason for banana chips instead of regular bananas). I definitely prefer real, whole foods, but I crave/need convenience and feel like the shakes give me more vitamins and minerals than what I would get with what I typically eat (which tends to not vary much).
My hemoglobin was up a little this time and my labs showed that I actually have plenty of iron in my body, so I’m going to go ahead and cut back on the beef liver capsules for a while and see if the levels remain good (my doctor said I’m getting close to having too much iron in my body and I don’t want to overdo it). Between my Huel shakes and liver capsules, I seem to have greatly increased my iron consumption. But on the plus side, my fatigue is pretty much gone now, and I’m thinking that getting my iron levels up most likely helped.
During my visit, my nephrologist also talked about the link between IgA nephropathy (IgAN) and Crohn’s disease and that mine is most likely a result of having Crohn’s disease, or rather the result of systemic inflammation, versus genetic factors for kidney disease. This got my wheels turning. I’ve looked up the connection between IgA nephropathy and Crohn’s disease before, but this time when I went to Google, I found some interesting headlines and research blurbs. The first title to grab my attention was, “IgA Nephropathy and Crohn’s Disease: Chicken or the Egg?”
That article from The American Journal of Gastroenterology looked at two patients with Crohn’s disease and IgA nephropathy and noted that successful treatment of IBD appeared to be associated with clinical remission of IgA nephropathy when IBD is diagnosed later, as seen in their first case, and that IBD-associated nephropathy appeared to have a worse prognosis as seen in their second case. While this article looked at only two patients, it noted the importance of considering “IgA nephropathy as a differential diagnosis in patients who present with signs of renal impairment in order to prevent adverse outcomes.”
S2732 IgA Nephropathy and Crohn’s Disease: Chicken or the Egg?
Fatakhova, Karina MD; Patel, Pratik MD; Rajapakse, Ramona MD
The American Journal of Gastroenterology 117(10S):p e1796-e1797, October 2022. | DOI: 10.14309/01.ajg.0000867568.24503.ff
After that, I found a February 9, 2021, article from Renal & Urology News (www.renalandurologynews.com) titled, “Inflammatory Bowel Disease in IgAN Linked to Increased Kidney Failure Risk” by Natasha Persaud. The article stated, “Inflammatory bowel disease (IBD) is a common comorbidity among patients with IgA nephropathy (IgAN), and its presence is associated with an increased risk for progression to end-stage kidney disease (ESKD), according to new study findings.” That sentence was/is a bit worrisome, but I kept Googling.
I came across a few more articles that indicated a strong link between Crohn’s disease and IgA nephropathy, but I’m not really sure what I was even looking for on my search. And since I couldn’t find anything with clear predictions about future progression of kidney disease, I felt all I was doing was going down needless rabbit holes. I can’t predict the future and I don’t want to live in fear, so I’ll try to take care of my body the best I can and will stay under the watchful care of my physicians. I’ll see my nephrologist again in six months to monitor my labs and I meet my new gastroenterologist later this week. Eight months after moving to Florida, I finally have my team of health professionals in place.
When I told my nephrologist at the VA that my primary care provider put in a referral for me to see a gastroenterologist in the community network, he asked who it was. When I told him, I got a glowing recommendation and high five. I’m feeling more confident every day that I have the right team in place.
With my new instructions to start eating sandwiches, I’ve tried to add a few things to my diet. As much for my own benefit of being able to look back on these blogs in the future, here is what my diet currently looks like:
- Intermittent fasting daily, following a 16:8 protocol
- Black coffee in the morning (Arbuckle’s Ariosa Coffee)
- Late afternoon: Huel meal replacement shake blended with spinach leaves, dehydrated banana chips, Welch’s Fruit Snacks (probably my biggest vice right now; is it a perfect food, no, but they satisfy my sweet craving)
- Evening: Sauerkraut or kimchi (wildbrine is my favorite brand) and usually either 1) steak, vegetables, and salad or 2) tuna (Wild Planet is my absolute favorite), pita bread or bagel, and a Nature’s Bakery Fig Bar (hey, I’m not perfect, I do have a few processed foods in my diet these days!)
- Beverages: I still enjoy wine in the evenings a few times each week, and have started drinking kombucha and green tea again.
- In full transparency, sometimes I’ll snack on chips and salsa or chocolate. I’ve got to enjoy these things while I can!
Note: Links above are affiliate links, however, I only link to things I love and actually use!
Have you been diagnosed with either IgA nephropathy or Crohn’s disease?
Click here to read my post about PicnicHealth and learn how your anonymized medical data can help advance research. Already familiar with PicnicHealth and want to have your anonymized data shared to help advance medical research? Use the links below to get started:
Enjoy this blog and the Crohn’s Fitness Food podcast? Support it with a little love at:
Shop all the things I love at: www.crohnsfitnessfood.com/shopping-list
Want to share your IBD story? Send me a message here.