I am a 27 year old female living with GI problems for over 10 years and no doctor can diagnos what's wrong. 10 years ago I lived in Tanzania for a summer and contracted Dysentery. It took 1 year, 3 doctors, 3 endoscopies, 4 colonoscopies, 4 stool sample tests and dozens of blood tests to diagnos. They put me on a 17 day antibiotic treatment of Flagil and within a couple months I was abou 60% better. They said it would take 5 years for my body to heal and after that we would know what life long complications it caused- lactose intolerance to be sure of.
It has now been 10 years. I have diarrhea (ranging from watery to just loose) 5 times minimum a day for all 10 years starting at 6:30am (waking me up), and at least 3 of the bowl movements are before noon. I have always been a skinny girl but since the dysentery have been consistently bloated below my rib cage and below my belly button, both. I am definitely lactose intolerant, but about 2 years ago discovered I was also gluten intolerant- ranging from nausea and bad diarrhea to days of cold sores, flu symptoms and explosive from both ends at the same time. One doctor said I must have Celiac as my blood test showed 489 IU/ml Thyroid Peroxidase (TPO) Ab (should be between 0 and 34). I have cut both lactose and gluten out of my diet and although a minor decrease in symptoms it has not really changed anything.
A year ago I started experiencing daily nausea. Many days I wake up having to run to the bathroom to vomit. 50% of the time I do vomit, 50% of the time I spit out excess saliva and nothing more happens. Throughout the day I have spells of excess saliva coming into my mouth- just like the moment before you throw up- and again, 50% of the time something comes up, the other it's just spitting the saliva out. The diarrhea I had learned to live with but this new symptom is debilitating and destroying my life- I throw up randomly in meetings and while socializing with friends (and not related to stress as one day I can be in a stressful meeting and be fine and then next relaxing on the beach and throw up). I am sometimes just slightly nauseas consistently for days straight. I have ended up in the hospital 3 times in the last 8 months for what seemed like the stomach flu- but my body couldn't stop vomiting (one of the times, every 3 minutes for 18 hours straight and it took 3 injections of anti nausea and muscle relaxants to stop it) and I get so dehydrated I start to pass out.
It seems that every month I become intolerant to yet another food- can't drink alcohol, starting to cut out olive oil. And now when someone even sneezes around me I get a head cold and flu within 24 hours that within another 24 hours leads to vomiting and then a week or 2 long combined flu with often times the only thing ending it, an IV.
It has finally gotten to the point where even dancing at a concert or having a week of increased physical exertion (literally as simple as having more meetings that I walk to) sets off the "flu". I have had the "flu" once every 3 weeks for about 4 months now. I started keeping an excel diary of my food intake, physical health and exertion etc. and can see no patterns other than if I do ANYTHING I get sick.
I recently went to a new GI doctor and had an endoscopy, colonoscopy, full stool sample test and blood tests done. He said I do NOT have Celiac (as per endoscopy- he did not do a blood test on this) and the ONLY things he found were mild gastritis, too much acid and abnormal mucus in my stomach. He put me on Prilosec which did nothing (I have had acid reflux symptoms before and none of this is that- I can feel the difference). He then said the only thing to try is IBS medicine (which I had tried already 10 years prior when the 1st doctor misdiagnosed the Dysentery. I tried the IBS meds for 2 weeks and no change. In fact I had increased gas pains. He said he gives up.
I have sharp pain under my rib cage (both sides) especially an hour or so after I eat as well as below my belly button. I have sharp pains in my lower back when my diarrhea is at it's worst. I get dizzy regularly and am always dehyrdrated- I eat pedialite popsicles daily and drink water constantly and my lips and skin are always dry as well as a general feeling of thirst and dry mouth.
The only other things I can think relevant- I am not pregnant nor do I have HIV/AIDS (been checked for both). I have temporal lobe epilepsy but my neurologist says that has nothing to do with it. There is nothing in my life that has been specifically consistant for those 10 years that could be an external irritant.
Someone please help.
Not yet- I was recently told about the potential gallbladder malfunction. My GI has essentially given up- would that be something he administers? or do I see a different specialist?
thank you for the response!
I forgot to add that I have constant strange burping. Like not acid reflux and not normal burping- almost like a bubble from deep down that I have to push out.
After you mentioned the Gallbladder possibility I spoke with my mother who said my grandmother had gallbladder attacks and had hers removed. However, I was raised macro biotic and although am not anymore, I eat very healthfully including organic foods. I do however eat eggs every single morning for breakfast and kale and fiber rich veggies often.
That's all I can think to add now. Hope that helps.
I'm not sure if my post will be helpful, but, it's something else to consider. A family in our state just found out why they have had diarrhea and vomiting. AFter 10 years of dealing with it they found arsenic in their water supply. They canned food themselves every year and that was the worst for them since the food was IN the water that had such high levels. Anyway, so sorry for your situation. Take care.
thank you for the reply! We actually considered water toxicity and mold and had both tested in our home. Water came back normal and mold was mild in the bathroom and now taken care of completely. Still had the problems in 3 different states and 7 different apartments.
Any doctor can order the ultrasound. My PCP did and then told me to find a surgeon when it came back that I had stones. I never went to a GI doc!
And too little fat can cause problems as well as too much! I'm a little person - so was my mother - and we both had ours out. Don't ever assume you have to ingest a lot of fat to have gb issues. Women are prone to problems because estrogen is a factor. Get an u/s and if it's negative, get a HIDA Scan.
Some of your symptoms are suggestive of adrenal insufficiency, which can cause nausea, diarrhea, vomiting, low BP, dehydration and dizziness. It also causes people to get very sick from any kind of stress. Major fatigue is usually described as well. Some people with it get dark pigment patches in their mouths, in the creases where the joints flex, around the areola of breasts or look tanned without sun exposure. I would check out the gall bladder, but also ask your Dr to check a serum cortisol level at 8 AM and 4 PM to see if low. Low sodium and high potassium can occur too. Anti TPO antibodies indicate autoimmune thyroiditis, (Hashimoto's) not celiac disease. This should be followed up too. An endocrinologist would take care of both of those, but your GP could order the cortisols as well, then refer you if abnormal.
Just saw my GP and have both an abdominal and thyroid ultrasound scheduled! He's referring me to both an endocrinologist as well as a GI doctor associated with a larger, progressive hospital for more integrated approaches. Thank you all for the help!