After the diagnosis by Emory I wanted a second opinion. I went to the Cleveland Clinic for in the articles I had read there was a doctor there that was a polyposis specialist and may have treated one Cronkhite-Canada Syndrome patient. Since then I know that Mayo Clinic has treated at least two patients with CCS.
The Cleveland Clinic confirmed the CCS diagnosis. One doctor did the colonoscopy and the doctor that I had identified as a specialist did the endoscopy. They also were in agreement with my initial treatment.
The initial treatment was; Sulindac (a prescription NSAID) Rantidine (Zantac) and Loratadine (Claratin). Sulindac was to reduce inflamation. Zantac is a H2 blocker – that is how it reduces acid in the stomach. Claratin is a H1 blocker. The literature indicated that other cases had treated CCS with a combination of these three prescriptions. Ten years later I still take these three drugs.
After the diagnosis I had an extensive battery of blood tests done. At that time I was diagnosed with low vitamin B12 – so I started taking that. A few years later I was diagnosed with low vitamin D – so I started taking that. I still take both.
Before my diagnosis I had went on a Prednisone ladder over about a 5-6 week period. It made a significant difference in my diarrhea. The principle behind the treatment was to treat the symptoms – for there was not a known cause. The Cleveland Clinic supported that approach. Though there was one exception – I also took a strong antibiotic for 7-10 days – as that was also mentioned in one of the articles. I have no idea if that helped or not.
I took the above prescriptions for a month. I was not getting any better. The gastroenterlogist relied on a recommendation from the doctor that specialized in nutrition. He recommended that I take an anabolic steroid for a month. At the beginning he said it would only be for a month and he would not extend it. He also recommended for me to take mega doses of zinc. I can’t remember the dosage but I was taking 3-4 large zinc pills 3-4 times a day. Three weeks in to this treatment – seven weeks after the initial diagnosis I began to notice a difference. My appetite was returning. I had also went on a second predisone ladder (at a lower dosage) as I continued to have diarrhea. After I went off prednisone the second time – my diarrhea did not return. In a few more weeks I began to grow hair – yeah. It took several more months for my nails to turn to almost normal.