I just had to come home from college two weeks before the end of the semester (and have the whole semester expunged from my transcript). A diagnosis of Celiac disease would explain almost everything that's ever been wrong with me and would also be really useful for school/paperwork/peace of mind.
Blood tests were negative for celiac (and, luckily, my doctor is very competent and well-informed, so I trust that), but I am severely anemic (and have been for most of my life), my vitamin D level was 15 (supposed to be 50-70), my antithyroid antibodies were extremely high (thyroid hormones were all normal), I'm less than a point away from having rheumatoid arthritis (I'm only 18 years old!), and some liver functions were very slightly abnormal (but my dr said that was probably fine).
I had a colonoscopy and endoscopy, and the the GI said the colonoscopy showed I have ulcerative colitis and the endoscopy "looked fine". I don't know if she actually took biopsies or not, because she was very dismissive of the idea of celiac. I am pretty sure that I do in fact have ulcerative colitis, because celiac wouldn't explain the inflammation/bleeding in my large intestine, right? My sister also has UC, and it explains the fact that I've had severe diarrhea for 16 weeks. However, this doesn't explain everything else that's wrong with me...
This is some background (sorry for the long, whiny read):
My stomach is so bloated/distended that I look pregnant, but the rest of me is tiny... My BMI is just barely not underweight (and I lost about 8-10 lbs this semester) but it's hard to say because my weight fluctuates drastically depending on how bloated I am.
It's always been really hard for me to gain weight, and I'm shorter than both of my short parents.
I have nasty smelling, painful, and really frequent gas.
I've had diarrhea/cramping for the past few months. Sometimes it's greasy/pale... sorry tmi! There was a time a few years ago when I'm pretty sure I pooped straight up oil (yuuuck).
My hair is falling out.
I have adhd, depression, anxiety, and brain fog.
I am so profoundly tired all of the time.
The lymph nodes in my neck are giant.
I have a giant lumpy thyroid to mach my giant lymph nodes (my neck looks like a sack of potatoes. it's cute.)
I have acid reflux (but until recently, I thought it was totally normal to burp up food all the time! heh.)
Sometimes I am famished, eat until I'm stuffed, and then keep eating - other times I go weeks with no appetite.
I'm kind of vaguely nauseous most of the time.
I'm clumsy; I think I have balance problems. I'm not really sure what's normal.
I have occasional heart palpitations.
I get migraines about once a month.
Sometimes I get foot cramps that make me vomit.
I have episodes of joint pain/stiffness.
I get sinus infections a lot.
My dentist said my tooth enamel is "naturally yellow".
I get night sweats. I think it's a little early for menopause ;P
Sometimes I get the same visual auras that I do before I get a migraine, but without the actual headache (so I see spots, basically).
Sometimes my hands/feet turn blue and numb even when I'm inside! My mom has Reynaud's Syndrome, so that's probably why.
I became lactose intolerant last year, and eating plain eggs has always made me sick.
I get headaches after eating bread/cookies, but that might be just because I can never eat just a little and they have a lot of carbs - I get headaches after eating sugar, too.
I also have really high cholesterol, which is kind of funny considering I'm a skinny vegan...
I used to have really awful periods, but getting so sick these past few months they have been almost nonexistent (okay, I don't mind that at all!).
I'm losing muscle (when enrolled in college, I played a varsity sport, and they do body composition - because of that, I know that although my body fat % has increased as I've gotten sicker, it's still below what an athlete is supposed to have).
My mom has rheumatoid arthritis, Hashimoto's, and Reynaud's. She just told me that her mother said "doctors thought she had celiac when she was a baby", but doesn't know what exactly her mom meant by that.
I felt way better when I was fasting (and therefore not eating gluten) before the colonoscopy, and there were three days when I was too sick to eat anything but bananas and spinach, and by the end of the third day I felt awesome.... awesome enough to eat about half a loaf of bread. I got sick again.
My doctor (not my GI) says I have autoimmune thyroiditis and put me on a ton of medicine/vitamins. She supports me going gluten free, but I do not have an official diagnosis of celiac disease. While gluten intolerance would explain GI symptoms, ulcerative colitis has many of those covered as well, and neither explain autoimmune issues, fat malabsorption, and the specific nutrient deficiencies I have (the nutrients I lack are absorbed in the small intestine). Also, I've been reading a lot of internet, and jeez! Doesn't this sound exactly like celiac disease? But if it were celiac, wouldn't my blood tests show something, and wouldn't my endoscopy look abnormal?
I guess what I'm asking is: if it is classic celiac disease, why are tests not showing it? If it isn't, what else would cause all of these things? It can't just be bad luck, right?!
If you've read all that, you're a champ and thank you so much for your time!! I've been lurking this forum for a while now and everybody is so incredibly helpful and supportive.