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donwake added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsCmv Infection - Not CeliacI wanted to thank everyone on this forum, everyone's posts were really helpful as I looked into possible Celiac diagnosis. I also referred my sister here because she has Celiac.
Before I get into my own experience, I'd like to suggest that others who post on here while investigating possible Celiac, please follow up with your results even if it's not Celiac. I think that can be quite helpful for those of us looking for answers to their pain.
So here's my story, perhaps not common, but it is cathartic for me to relate it, and I think it teaches something. I had three doctors visits, two ER visits, and two hospital stays.
My symptoms were abdominal discomfort/cramping, diarrhea, extreme fatigue, and strong facial flushing accompanied by migraine-like headaches. I also had body aches, chills and sweats, especially at night. I lost about 25 pounds in the two weeks of the worst symptoms because I simply couldn't eat. I was nauseous without vomiting, and I never tested a fever above 100. My symtoms were especially bad about 20-30 minutes after eating.
Although I had tested negative on the iga bloodtest, I still suspected Celiac because my sister had an iga deficiency that had also caused her to test negative prior to the endoscopy confirming her Celiac. So I was very eager for the doctors to follow through with Celiac testing.
In the end, I am really glad the doctors went through all the testing they did. After chest x-rays, abdomen CT scan, ultrasound of my liver/pancreas/gallbladder, colonoscopy and upper endoscopy, MRI of brain, and about 25 vials of blood, the GI docs finally discovered in the small intestine biopsy a viral infection (CMV) had gotten to my small intestines and liver and kidneys. One lab result that really complicated the diagnosis was I had elevated liver enzyme levels.
Apparently acute CMV infecton is pretty rare in patients unless they are immune-compromised with HIV or cancer, but it can happen. I was put on antivirals on an IV for a few days, and since my symptoms had started to go away, the infectious disease doctors let me go home and continue with oral meds.
The list of suspected illnesses as I was tested ranged from pancreatitis to gallbladder disease to acute Hepatitis to various cancers to Celiac or other auto-immune diseases.Thankfully it turned out to be nothing chronic, although the doctors said my infection could have been life-threatening.
The biggest lesson I learned was patience. I was convinced I had Celiac, as my sympotoms seemed to be intensified forms of what I had already been feeling for a few years. But there are a lot of possible conditions out there and it can be very involved trying to diagnose, especially if someone has more than one thing going on to complicate the symptoms.
In fact, my doctor also thinks I have a gluten intolerance because the gluten-free diet has helped a lot with the diarrhea and facial flushing that I had been having for so long.
I hope this helps someone. Thanks again for all the great information provided in this forum!
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