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gene0 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsQuestioningI would just like to tell you about my recent medical history and I would like to know if any confirmed celiac cases could give me some advice.
As of March of 2012 my health went downhill. One morning I felt like I was coming down with the flu, I waited for a few days and I didn't feel better, so I went to the doctor and was diagnosed with pneumonia in my left lung. I took antibiotics and I felt fine for a month, then one day I just felt exhausted. I went back to the doc, got more antibiotics, and I felt better for a few more weeks. Then I got sick a couple of more times with bronchitis and ear infections. After a bunch of tests I was finally diagnosed with chronic or recurrent epstein barr virus. All of my lymph nodes (and spleen) were enlarged, I was exhausted, and I felt an extreme and unnatural amount of anxiety. The doc put me on antibiotics for a while, in case I had been exposed to Lyme disease. Fast forward a few months and I still have fatigue, brain fog, and abnormal blood work. The physical exhaustion has gotten better as has most of the strange anxiety. (I can tell you that the anxiety was something physiological, it was not a normal mental thing). I thought I had encephalitis or something. However, I still can't concentrate on things for very long without feeling worn out. My joints all make loud popping and cracking sound. Its like my bones are made of old creaky wood. This is the most unsettling symptom to me besides the brain fog. Does anyone else have creaky joints? I briefly had eczema on my forearms last spring, which I had never experienced before. I have a splotchy rash that sometimes appears on my chest, neck, and a bit on my face.
After a few months of having mono, and still no change in symptoms I tried a gluten free challenge on a whim. I tried to cut out gluten as best as I could. Some days I did feel better, but other days I felt like crap again. When I did go off gluten, I felt like my stomach was messed up (Which I attributed to all the antibiotics I had taken in the past) Prior to this I really didn't have any GI issues. So I asked my doc about celiac, and he acted like I was another hypochondriac crazy patient. He tested me anyways, but it came back negative.(However I probably hadn't eaten any gluten for a week before the test.) oops.
Prior to all of this, I was pretty healthy, a bit skinny, but I had a huge appetite. Now I feel like an old man. As far as family history, my mother and some others have hypothyroism, my uncle had colon cancer at a young age, and my grandma had rheumatoid arthritis. Autoimmune diseases do run in my family(probably on both sides). No one with known celiac though.
I also saw a rheumatologist based on my bloodwork, and he said it was a possible lupus case. However, I doubt this as I am a white male and I would assume that celiac would probably be 100X more likely than lupus. (I calculated this based on stats.) Also, my ANA was negative, and I don't think my rash is the same as the butterfly rash. Here are some of my blood test results. I was wondering if any of this is in line with celiac disease. I am really hoping its not lupus. Or some sort of infection (I lived and worked outside in new mexico last year, and I thought it could be valley fever at first, although that came back negative.)
I know that the bloodwork doesn't appear promising, but I swear that I wake up sometimes and almost feel 100% normal. And this feeling seems to coincide with a meal that I ate the night before such as stirfry, corn tacos, or baked chicken and mashed potatoes that didn't have any gluten in it. I have to make a new appointment with a new rheumatologist, since I recently moved because I ended up not enrolling in graduate school like I had planned on doing.
Neutropenia - borderline low
WBC - low
RBC - normal
Low complement c3 and c4
Lupus anticoagulant: PTTLA, and hexagonal phase phospholipid - high
anti-dsdna - mildly elevated
ANA - negative
Hepatitis - neg
lyme - neg
Sjorgens, anitsmith, RNP, anticardiolipn,antiscleroderma, anticentromere, CRP - all negative
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