For the past year or so, and especially the last couple of months, I have been having odd pains all around my body. They are especially concentrated around my lungs, abdomen, jaw line/neck and armpits. I am frequently nauseus, I wake up several times per night, sometimes having hot flashes and really sweaty. (Not always, but some nights it's bad, others not at all.) I have frequent headaches and am tired most of the time. For the past 6 wks-2 mos my lymph nodes in my neck have been swollen and painful. I am almost always VERY bloated when I wake up in the morning, this usually goes away in an hour or two. I feel short of breath randomly, and taste blood in my mouth some days. Temp fluctuates between 96 on waking to 99.5 during the day. My lymph nodes in my neck hurt, are hard, and have been that way for over a month. In the past year I have lost 75 lbs, not trying to lose weight. It was attributed to celiac's disease and my resulting change in diet, however, with these symptoms, I have lost 15 lbs or so of it in the past 6-8 wks since I started feeling really bad.. I went to the doctor, he ordered a CT scan of my chest regarding the chest pain, told me there were "no significant changes" which is odd because you need a baseline for changes to occur, this is exactly what the radiologist said when I called and asked what that meant. (I have a disc of the scan and when the contrast is on there are many small white things on my lungs...) I called and asked because when I questioned this, the doctor flipped out and told me to leave... Not fully explaining what he meant by that, just repeating that the results said there were no significant changes so I'm fine and that he isn't a radiologist so he won't explain what something on the scan is... I am NOT fine.. I would think anyone would agree that what is going on is very odd. I finally got an appointment with an internist yesterday, and he wants to get the results to that CT scan as well as a new one of my abdomen. I took blood and urine tests yesterday, which were normal. I need to send in a feces sample, and they have this ct scan of my abdomen scheduled. However, I feel that I need my lymph nodes sampled to make sure that I don't have lymphoma, because I have every symptom. However, every time I mention any type of cancer, every doctor I talk to basically tells me I am a hypochondriac and I'm too young (23) to have something like that, which I find to be rediculous. The internist wants to see me again in a couple weeks after I get the abdomen ct scan. However, I feel worse by the day and I'm considering just going to the hospital and handing them a sheet of my symptoms, there are too many to remember, and none of the doctors that I see bother with all of them. They literally write down 3 or 4 symptoms and completely ignore the rest. When I ask if they want the sheet where I wrote them all down, they respond that they don't need that. This is insane, why aren't these people doing their jobs? When I was diagnosed with Celiac's disease, it was after months of seeing doctors, 2 colonoscopies, an upper gi, urine tests, blood tests, etc etc until I actually asked my doctor to send in a test for celiac's, guess what? Positive. How can you tell someone who is clearly having severe health problems that they are fine??? More importantly, should I just go to the hospital?? Is that even going to help, or will I get the same run-around that I have been getting for months now? (I have seen a couple different doctors, the one that flipped out was concerned enough to order that ct the same day, but when he was told "no significant changes" I was suddenly perfectly fine. The past week or so the pain has increased and seemed to spread, my underarms are very painful at times and my joints hurt constantly. Thanks a lot in advance.
Other symptoms: Wheezing, cough that I have had for a long long time which is not productive and very wheezy. If I take a deep breath I hear/feel "popping" in my lungs, and it is mildly painful to do so. (Not bad, but noticeable pain.) I'm not coughing up blood or anything, nothing is visible as far as blood in my sputum, but the taste is there.. I do not have a sore throat, it's not a cold, I don't have the flu, none of the typical things one would expect are going on. Tests ordered were CBC w/differential, comp metabolic panel - cmp, lipase serpi qn, amylase serpi qn, TSH 3rd gen serpi qn, urinalysis comprehensive, echocardiogram (the echo is for a heart murmur, it was found to be benign about 7 years ago, and is only audible when I am sick, no doctor hears it when I am well...) My head twitches randomly sometimes, I noticed a few weeks ago when I had one drink it was much worse, along with the other symptoms, as if the alcohol compromised my immune system. I have not consumed any alcohol since. I feel dehydrated a lot of the time, especially when I wake up at night, despite drinking probably 4 or 5 glasses of water just throughout the night, and the surface of my tongue is almost always "rough" for lack of a better term.
I felt like this for 2 years before the diagnosis of celiac. After about 6 weeks on a very strict gluten free diet...they are almost gone (the weird symptoms that change constantly). I guess my question to you would be..are you following a very strict gluten free diet? Also, the gastro tested me for lactose and fructose intolerance and they were both positive..that is also very common in Celiacs. Do you think that you have other food sensitivities in addition to wheat, barley and rye. I also continued to have my symptoms until I realized that I could not tolerate corn or oats either. Me and grains just don't get along.