Is There Something Besides Celiac That Could Be Causing This?
Posted 20 May 2012 - 09:24 AM
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.
Posted 20 May 2012 - 10:08 AM
If you have been reading around the board you will have discovered that there is quite a margin for error on both blood testing and biopsy for celiac disease. You may well fall into that error range. Some test positive for one and not the other, some negative on both, some positive on both. So doctors believe in the tests a lot more than the patients who are actually experiencing the symptoms. To find out if your GI actually took celiac biopsies, ask him for a copy of the pathology report. This would be a tremendously wasted opportunity (and unforgiveable) if he did not.) Sometimes reports are interpreted as negative when there are early signs of celiac there. From a patient perspective, it is always a good idea to get copies of all your testing reports - they are too important to your life to leave them solely in the hands of the doctors. You never know when you may need to take them elsewhere for further opinions or treatment.
There are many who have both ulcerative colitis AND celiac disease -- the two are not mutually exclusive. Your family history, the autoimmune diseases, your thyroid antibodies, your lactose intolerance, would all point in the direction of celiac disease. Same for your neurological symptoms. Nutritional deficiencies can occur in either celiac or non-celiac gluten intolerance, as can many of the other celiac symptoms. And the ulcerative colitis does muddy the celiac picture.
You need further follow-up with an endocrinologist for your thyroid and supplements for your D deficiency and anemia.
If you are not getting anywhere with further testing or diagnosis (and I know you would like the diagnosis - but the ulcerative colitis should cover you for school for now) I would suggest a very strict trial of totally gluten free for at least a month. You may well find that your joint pains, migraines and many other problems resolve on a gluten free diet along with your anxiety, depression, brain fog.
At any rate, first get a copy of the pathology report, and proceed from there. You are entitled to it by law so don't be put off.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
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