Ahhh the ever changing minefield of being a Spoonie. My newest hurdle is the increasing frequency of my IC (Interstitial Cystitis) flares. Unfortunately it seems to be a side effect of a recent dietary change stemming from a series of new allergic reactions after a set of injections. So lets rewind a bit here. Two years ago after several years of begging various doctors to test my vitamin levels one decided to “humor me” and run the bare minimum vitamin D level. Well though I don’t enjoy having another issue added to my subscription I did feel vindicated when it came back with a level of sixteen. With thirty being the minimum acceptable level that is a significant deficiency.
Since then despite multiple supplements and a few prescription options my levels have continued to fall. First to an eight four months after the initial test, then a four, then several months ago they finally came back as undetectable. Which lead to a less common more aggressive option, intramuscular injections. Given that naturally insurance covers nothing on the vitamin spectrum I was on my own to research and price hunt which ended up more complicated than anticipated.
You see Vitamin D is classified as a steroid medication which severely restricts ones ability to obtain it even with a prescription. Combine that with limited financial means and a laundry list of allergies it took me over two months to find a suitable option. Even then it wasn’t bottle in hand. Though I have administered IM and SubQ injections at home for other medications due to vitamin D’s steroid classification they would not deliver it to my home address and it was not something I could have compounded locally.
So the bottle made its way rather slowly to my endocrinologists office. Where it sat refrigerated and unused for a professionally inexcusable time while I waited for an appointment slot to open up. Given that the shot can be administered in under three minutes total time by a nurse I was understandable disgruntled at waiting over six weeks for something id already worked so hard to obtain. Anyways once I was able to get an appointment the first shot was the most stressful. Personally I have no phobia of needles but in the process of researching my allergies severely limited my options. Still the least risky option contains a sesame product which is a moderate allergen of mine. So my first injection while fast required me to wait around the office for about an hour to ensure I wouldn’t be going into anaphylaxis on my way home. Thankfully all I received was a sore arm and after my allergy medications did their work all that remained was a small case of hives.
I wish that was the end of the issues and leading up to a happy ending but not much is that easy. My doctor would have preferred I be coming in for injections weekly but between my poor health/stamina and other medical obligations that wasn’t realistic. So it was settled id go in for a slightly higher dose every two weeks with labs to follow in three months. In case you haven’t anticipated it yet that did not go as planned either. I had been feeling worse than usual starting three days after my first shot. Not an unusual experience in my body when playing lab rat but over the weeks the symptoms began to worsen. Increased muscle and bone pain, increased insomnia, but most frustrating of all was my seriously pissed off immune system.
Typically I have mild psoriasis and severe eczema though most of the time I’ve got a good handle on coping with the latter. Not so anymore by the fifth shot I was back to 70% of my body covered in eczema from my scalp and eyelids to my feet regardless of my formerly effective treatment regime. The psoriasis was attacking my feet, ankles, and elbows more aggressively and my MCAD/MCAS was gearing up for a knock out fight. There was no reprieve between doses and when my immune system began acting on previous benign foods I chose to take a break. So through the holidays I have postponed my injections while I attempt to get a handle on these increasing and new symptoms.
Back to the IC now as this is where the dietary changes have had the most negative impact. As a large portion of typical high protein/protein combining options are lost to me due to previous allergies (nuts, soy, gluten, eggs, dairy, rice, some legumes, shellfish, mammal meats such as beef and pork, ect) losing chicken to my newly manic immune system was a tough blow. Typically my only complete protein options are chicken, turkey, wild salmon, and occasionally ill be able to tolerate small portions of sardines.
With the rapid onset and fairly severe reaction I began having to chicken involving severe GI distress, wheezing, and 1/3 of me covered in hives I choose not to experiment with other poultry such as turkey. In the past I have found if I can eliminate an allergen in its entirety from my diet for a minimum of three months ill occasionally be able to reintroduce it successfully in moderation. So with that seeming the most productive least miserable option I began the experiment.
After several failures in the fish family such as trout and herring I decided to move into pseudo grains starting with quinoa followed by legumes. Unfortunately my bladders long standing issue with lentils still holds though navy beans and quinoa were reasonably tolerated by both my GI system and bladder until I began to consume larger amounts to compensate for the protein loss of removing chicken. Over the course of the last five weeks I’ve noticed more days in my med chart marked with pyridium (aka OTC Azo pain control) use which is not ideal for my organ function and GI issues.
Thus I found myself on a quest searching the new foods id added or increased consumption of leading me to the possibility of being triggered by oxalates which quinoa is known to be high in. Though amounts are not referenced on this particular chart it is commonly suggested to avoid if you have health conditions triggered by oxalates. Though I’m not certain this is the hard and fast solution it is worthy of experimentation as many of the foods I’ve added or increased register moderate to high in oxalates. Especially after many nights over the toilet praying for Azo to kick in so I could possibly get 3 hours sleep that day. Thus the balancing act needs adjustment once again and so I begin to research lower oxalate options to meet my protein needs.