I'm 24 years old and I've been having some serious issues since about 6th grade. In middle school, I didn't eat breakfast or lunch because it made me really sick. I was able to eat dinner because my parents' food was very bland (low sodium, no allergens). Come high school, I started to eat breakfast but I'd spend the entire morning with incredible stomach pain. I had bowel urgency, and I was completely disconnected from my studies. I did well in school, but there were days when my focus was on my stomach pain and not really on what the instructor was saying.
I had a high frequency of bowel movements, a lot of joint pain, recurring fevers. My doctors attributed it to stress in high school regarding college applications and eventually leaving home. Fast forward a few years (December 2007) -- it was college and I was losing a lot of weight. I lost about 15 pounds in a month at one point, and I had several accidents. It got to the point that I was unable to move because of how severe the pain was, and how fatigued I was. In 2008, I was referred to a rheumatologist for the joint pain -- and while she did find low ferritin levels, high WBC count a positive ANA titer, very serious case of anemia (at one point considering a transfusion).
I was diagnosed with celiac disease several months later, and while the immediacy and food-related illness was not as prominent after starting the gluten free/casein free diet, I still (for the past four years) have had serious stomach aches, regurgitation, frequent bowel movements, blood in stool, fever, fatigue. There was a time in 2011 that I had sharp pains, was unable to eat, high fever. I made an appointment with the only GI that was open that afternoon -- probably my mistake because NYC GIs don't usually do same-day appointments so I should have been doubtful of that from the beginning. He immediately wanted to retest me for celiac disease and had me come in for an upper endoscopy the next week (?! needless to say, he claimed my celiac disease "disappeared" even though a week is not enough for an endoscopy).
He suggested a colonoscopy and found signs of inflammation in my large intestine and that my colon was obstructed by stool. I thought -- yes -- finally, he'll work with this. But he sent me on my way, and claimed I had IBS. He also referred me to Memorial Sloan Kettering Cancer Center for possible ovarian cancer (I was 22). He said in women bowel issues are often related to the ovaries, and he sent me on my way. I did go to MSKCC and fortunately all was well, but was recommended for genetic testing due to family history of ovarian cancer (completely off course). I should also mention that because of my ethnicity (Hispanic), he claimed that despite whatever evidence he may have, I could not have Crohns disease because people with my ethnicity just "don't get it."
A cousin of mine recently presented with very similar symptoms and was quickly diagnosed with Crohns disease (though he too, at 16, was sent to get checked for cancer--prostate cancer). I also learned that a cousin of my father's and a cousin of my mother's both have Crohns disease, so it's not all that distant from my family. A friend in Massachusetts suggested I go to MGH to try and see the GIs there, because they really know what they're doing. At this point, I'm frustrated, in pain, and continuing to lose weight. At the last doctor's appointment I was told that between the last two appointments I'd lost 20 lbs.
I do believe I have celiac disease, but I also am a firm believer that I don't "just" have celiac disease, as I continue to be symptomatic despite four years on the diet and because of the severity of some of my symptoms. I can't even sleep at night because of how bad it gets. Sometimes I feel like I'm being stabbed in my lower abdominal area--that's how bad it hurts!
I guess I'm just very frustrated and looking for answers I haven't gotten yet! Happy to find a place online where people understand.
I had a high frequency of bowel movements, a lot of joint pain, recurring fevers. My doctors attributed it to stress in high school regarding college applications and eventually leaving home. Fast forward a few years (December 2007) -- it was college and I was losing a lot of weight. I lost about 15 pounds in a month at one point, and I had several accidents. It got to the point that I was unable to move because of how severe the pain was, and how fatigued I was. In 2008, I was referred to a rheumatologist for the joint pain -- and while she did find low ferritin levels, high WBC count a positive ANA titer, very serious case of anemia (at one point considering a transfusion).
I was diagnosed with celiac disease several months later, and while the immediacy and food-related illness was not as prominent after starting the gluten free/casein free diet, I still (for the past four years) have had serious stomach aches, regurgitation, frequent bowel movements, blood in stool, fever, fatigue. There was a time in 2011 that I had sharp pains, was unable to eat, high fever. I made an appointment with the only GI that was open that afternoon -- probably my mistake because NYC GIs don't usually do same-day appointments so I should have been doubtful of that from the beginning. He immediately wanted to retest me for celiac disease and had me come in for an upper endoscopy the next week (?! needless to say, he claimed my celiac disease "disappeared" even though a week is not enough for an endoscopy).
He suggested a colonoscopy and found signs of inflammation in my large intestine and that my colon was obstructed by stool. I thought -- yes -- finally, he'll work with this. But he sent me on my way, and claimed I had IBS. He also referred me to Memorial Sloan Kettering Cancer Center for possible ovarian cancer (I was 22). He said in women bowel issues are often related to the ovaries, and he sent me on my way. I did go to MSKCC and fortunately all was well, but was recommended for genetic testing due to family history of ovarian cancer (completely off course). I should also mention that because of my ethnicity (Hispanic), he claimed that despite whatever evidence he may have, I could not have Crohns disease because people with my ethnicity just "don't get it."
A cousin of mine recently presented with very similar symptoms and was quickly diagnosed with Crohns disease (though he too, at 16, was sent to get checked for cancer--prostate cancer). I also learned that a cousin of my father's and a cousin of my mother's both have Crohns disease, so it's not all that distant from my family. A friend in Massachusetts suggested I go to MGH to try and see the GIs there, because they really know what they're doing. At this point, I'm frustrated, in pain, and continuing to lose weight. At the last doctor's appointment I was told that between the last two appointments I'd lost 20 lbs.
I do believe I have celiac disease, but I also am a firm believer that I don't "just" have celiac disease, as I continue to be symptomatic despite four years on the diet and because of the severity of some of my symptoms. I can't even sleep at night because of how bad it gets. Sometimes I feel like I'm being stabbed in my lower abdominal area--that's how bad it hurts!
I guess I'm just very frustrated and looking for answers I haven't gotten yet! Happy to find a place online where people understand.
