I have an undiagnosed condition and need help!?I am a 20 year old female who has been having stomach problems for the past year or so, and it has gotten much worse in the past six months. The symptoms are now starting to affect more parts of my body, and the pain can be debilitating and is affecting my schoolwork. I was tested for thyroid issues and Celiac, but both were negative. I also went to the ER for abdominal pain a few weeks ago, but that didn't turn up any new results.
Here is a list of symptoms:
Digestive symptoms - abdominal pain (sometimes crampy and all over, sometimes very sharp in right upper abdomen or left lower abdomen, sometimes made worse coughing or sneezing), LOTS of diarrhea, undigested food in stool almost every day, sometimes fat or mucus in stool, loss of appetite, lots of extreme bloating, some nausea/heartburn/dry-heaving, sometimes foods taste very different than they should (ex - candy tasting extremely acidic, milk tasting like sushi, plain white rice tasting nutty)
Skin symptoms - I get a red skin rash almost every night or afternoon. It's itchy, not raised, and not dry. It's not related to any contact allergy or physical activity. Sometimes, it seems to happen more often or with more severity when I feel really warm or cold. My hair has thinned significantly in the past year, and I've started getting coarser hair elsewhere on my body (arms, face). My skin feels itchy most of the time.
Nervous symptoms - extreme fatigue/malaise, depression/anxiety, headaches, trouble concentrating, photophobia and phonophobia, increased sensitivity to cold and heat, numbness in fingers
Other symptoms - occasional low-grade fever, muscle weakness/pain, joint pain/swelling, easy bruising (once I got a bruise from the elastic band on my sweatpants and it wasn't tight, another time on my arm from holding a package - the bruise was in a line from where the package was resting against my arm), I had some very mild jaundice and green-tinted urine at one point. I'm anemic and have high liver function according to the most recent tests. I don't drink, and I don't take any drugs unless they are prescribed (I deal with headaches by drinking water and resting). Small doses of Lortab helped relieve many of the digestive symptoms (prescribed by the ER). Diseases that have come up with my doctor are: lupus, Crohn's or ulcerative colitis, IBS, Celiac (apparently false negatives are common?), and diverticulitis. Also, gallstones and pancreatic cancer were suggested, but less likely. We are pretty sure it's autoimmune.
I'm sick of being sick, and am reaching out for help in every place possible. I would love any suggestions or ideas, questions to ask my doctor, tests to request, warm thoughts, or stories (if you had a similar illness and got a diagnosis or found a way to manage the symptoms). I'm seeing my doctor next week, but because I've already gone through two series of tests, I want to be more prepared this time to help lead to a diagnosis more quickly. Thanks in advance!
Posted by yeppers
Look up Colloidal Silver. It's natural, & will fix your problem.
Posted by Semper Fi
You have a lot of symptoms that could indicate a variety of problems. Celiac Disease, possible intestinal obstruction (Intestinal carcinoma, lymphoma), bruising is indicative of a bleeding disorder such as Von Willebrand disease or leukemia. Upper right quadrant pain indicates gallbladder disease, especially if fever and nausea are present also. Some of your symptoms are also those that present with kidney disease and diabetes so you have a real jungle of symptoms which has a tendancy to lead me back to Celiac Disease because ...
Celiac Disease is an autoimmune disorder which can present with an amazing array of symptoms, Gastrointestinal (cramps, pain, bloating, fatty stools, nausea, vomiting), Neurological (tingling, numbness, nerve pain, fatigue, depression and more) and so it is just frustrating for people who have it yet have not been diagnosed plus false negative tests are common. The definitive diagnosis is based on a positive biopsy of the small intestine. It's not uncommon to have a false negative blood test yet have a positive biopsy.
If you had maybe thought you had Celiac Disease and went on a gluten free diet before being tested that could have created a false positive and it may create a false biopsy if you have been on the gluten free diet for anytime allowing your small intestinal cells to heal and the villi to re-establish. However that doesn't sound likely that you have adapted the diet because you said you are still experiencing symptoms even though some people with refractory Celiac do not see a reversal of symptom via diet.
If it were me I'd ask the doc to re-test for CD (blood work) and also do stool fat, total protein, albumin, calcium, vitamin b12, autoantibodies, vitamin d, vitamin e, CBC, CMP.
Oftentimes Celiac Disease causes malabsorption (reason for fatty stool) and this in turn creates vitamin deficiencies within the fat soluble vitamins such as d, calcium, vitamin k. b12 and so forth. It also causes anemia in many people and a host of other symptoms and complications because (via autoimmune response) it can attack your organs such your heart, lungs, liver, kidneys and pancreas (autoimmune response) thereby creating symptom from those sources as well.
Celiac Disease can also cause lactose intolerance (nausea, vomiting, diarrhea in severe cases) and so this complication could be a portion of your symptoms.
I would suggest you keep a very concise diary of your symptoms, including when they occur (time, date, etc...) and of course exactly what they are. Note what you eat daily so that you can correlate your food intake with symptoms (note whether symptoms appear immediately after, within hours, or even a day or two after ingestion). Be as accurate as possible and by this I mean if you chew a stick of gum, write it down because ...
You'd be amazed how many products we eat contain wheat, barley or rye (sources of gluten) or are processed with wheat, barley or rye products. Even spices can contain wheat and wheat derivatives that contain gluten. If you drink wine the oaken cask it was probably aged in most likely was treated on the inside of the cask with a wheat paste to prevent leakage. That paste leaches into the wine and guess what? If you have CD you will most likely suffer intestinal damage.
Of course I am not saying you have Celiac Disease. You may not have it at all. You may have something else entirely such as cancer that could present with a myriad of strange symptoms or it could be a combination of gallbladder disease (pain, nausea, vomiting, diarrhea, fever, jaundice are all possible symptoms) and kidney disease. Now, don't let what I write frighten you, simply get your doc to rule various possibilities out by doing the appropriate tests.
I wish you better health :-)
Posted by Kate
Hi Ursula,
Multiple food intolerance can give many of the symptoms you describe (constipation/diarrhea, bloating, abdominal pain, muscle pain, mood problems, skin problems etc. If this is your issue, then the standard tests will usually come back clear. Anemia is common in Crohn's Disease so be sure to ask your doctor about this too.
Have a look at the following links on food intolerance:
http://www.foodsmatter.com/allergy_intolerance/food_intolerance/articles/hunter_huntley_food_intol.html
http:www.probiotics-help.com/food-intolerance-symptoms.html
Food intolerance can arise after a course of antibiotics, a gut infection. It is also common in those with Chronic Fatigue Syndrome. The photophobia, phonophobia, food intolerance, muscle and fatigue and malaise issues and trouble concentrating would also suggest that perhaps you should look into Chronic Fatigue (CFIDS).
Hope this helps!
Posted by Linda R
You might consider seeing a specialist like a rheumatologist and/or allergis.
Posted by catherine
I have no experience or known people with that kind of symptoms. Its so many that it is hard to know what the underlying problem is. I just hope that you get well soon.
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