I have Celiac disease. However I react to all sorts of foods that are certified GF. For instance. Vinegars of any kind give me the same reaction as when I ingest gluten. Its like my immune system is on high alert and attacks my body to the point my diet is so utterly limited I'm struggling to eat. I have full workups of bloodwork recent and over time, MRIs, CT scans, allergy panels food and general, various nuclear tests, gastric emptying test, biopsies through my digestive tract, and ANA test. Various tests with hard copies just ask if you have an idea for a test as I may have had it before. 7 levels high and or low in my blood frequently changing. Mostly appear to be RBC count high, direct and indirect bilirubin, I will update if I can remember more or to answer questions as need be. I will share anything TMI such as why my stool color is wildly incorrect or medical labs so please do not hesitate to gain insight or no questions are dumb as my Drs are struggling to find an answer but they see my blood levels aren't right and know its not psychosomatic. My body has massive system wide inflammation I had a recent surgery and my surgeon said my body has a majorly aggressive inflammatory response for some reason. I had major swelling for months even in steroids for 3 or 4 weeks. I get migraines from mild to complete vision loss. Chronic nausea round the clock with medication to fight it sometimes to the point of slobbering in myself and puking. I've been on feeding tube formula when I am having trouble with foods its nestle tolerex packets. I'm constantly drinking loads of water from extreme thirst. Alongside drip drops and body armours to keep hydrated which sometimes isn't enough. For instance the other night I drank 3 bottles of 16 ounce water, 2 16 ounce body armours from 1030pm to 8 am. Woke up with a migraine so bad I drank another 16 ounces of green tea, then had a 28oz body armour all before 1030am.
I need someone who can help find out what is happening inside me by any means. I have 3 GI specialists. 1 liver specialist, and primary Dr. Nobody can find out what is happening but know something is not right. I've spent so much time and energy researching and cross referencing labs myself online and with my Drs. If anyone has any idea why my immune system or an organ of some sort is robbing me of all my food and health. I'm completely open to sharing any and all info to be able to not be completely emaciated and miserable. I will do anything. I think that's obvious because I'm posting on Lemmy of all places.
Edits for testings I remembered off my head with many not listed. I'll update as I can for info so consider this a rolling post. I'll talk to anyone here or online elsewhere, in person I do not care. Friends, family, Drs, anyone. I am that desperate as my life is at stake and my QoL is next to zero. I'm in the hospital all the time. I have developed tremors, memory problems, general cognitive decline from fighting these issues for so long. Severely for 3 years.
One thing I discovered when I was struggling with mystery stomach ailments was that testing for SIBO/IMO is rarely done even though the treatment can be as simple as a course of oral antibiotics. This is because the test involves drinking a vile sugar concoction and then breathing into a bag every 20 minutes for 4 hours. My gastro didn't do it, I had to ask for the test myself and then travel to a different city to get it done. You've said you've had a ton of tests (I did too) but bizarrely a SIBO test just isn't one of the common ones. I ended up having IMO.
Its called a lactilose manitol test and I have had it. My entire state didn't have the equipment. I had to go to another state to get it done. I tested positive on the first bag. The second was higher and by the 3rd they knew based in the results so far I had it. Though I finished the test. Over the course of time my GI specialists only knew to prescribe antibiotics. When they didn't know how to fight it they referred me to another GI specialist. Which is why I went to 3 different ones and so many bottles of antibiotics. I was on 2 for 2 weeks then switched to 2 different ones for another 2 weeks. Did that for 15 rounds over a year and half. Sibo is wildly not understood. Not even recognized as an issue. Most diagnose it as IBS. Which is just not true. If you've had SIBO then you'd know IBS is not SIBO. Its scary and cruel to face it. Its what nearly killed me. They gave me 4 to 8 weeks to live. I still don't know how I survived.