I was diagnosed with CD in 2002. Never heard of it before, went on a GF diet, never felt any different, so questioned whether or not the diagnosis was correct. I July 2015 I ended up in ICU, 102lbs, intestines were like mush, had surgery for fissures because of the chronic diarrhea, blood transfusions, iron infusions, then on a PIC line for 3 weeks and prednisone. Immune suppressants are not for me!! 4 years ago, on a 2-wk Alaskan cruise, I spent 5 days in the clinic getting IVs of nutrition. Then when getting home I was in the local hospital for 8 more days of IV nutrition, which upon my release, they told me that I had RCD type 2. At that time, I did not have any of those tests done. Since 2015, I've been on a strict GF diet, I'm 98% off dairy, and 95% sugar. My diet basically consists of meat, potatoes and veggies, eggs and fruit. As I sit here writing this, I've struggled lately with dizziness and weakness, diarrhea and fatigue. I feel as though I need some more IV nutrition but am not interested in going to the hospital at this time (not in this world right now, anyway). I've spent 1000's of dollars on vitamins, IV's and vitamin A &D shots, blood work analysis, appointments with the ND, plus medications for hypothyroidism prednisone and Imuran, and Budesonide. To top it off, I got shingles in my face and head last Jan '21, which has turned into PHD Post Herpetic Neuralgia. All not fun! It's been a long journey. I also have alopecia and lost all my hair in 2015 after being so sick. Life is challenging. I don't like to sound negative, but it's frustrating and sad. The GP and GI both push steroids as their only answer. I've never been told that I have chronic or IBS or colitis, but have been told I have hashimotos. Lots going on. Btw, my GI consulted with another GI at MacMasters University in Hamilton, ON. They wanted me to go there then covid arrived. I never did go, mostly because of the potential cost of travel and accommodations, but was open to a zoom appt. I've had a few (4?) endoscopic done and a few colonoscopies done (3?) In the past years.
Seronegative celiac disease with IBS, subclinical hypothyroidism. Just received my result from my last endoscopy: cd3 20 but Marsh 3a atrophy. I am on a Omega 3 diet free of cereals, wheat, milk and many others. I have a capsule endoscopy exam to see if I developed Chron s disease.
Nice information. I have a question. How is tropical sprue excluded? I had my second biopsy results after 1 year and it was mach 3a like the first one after I tried my very best with a strict gluten free diet. I am a frequent traveler to the tropics.
