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.
I’ve been tested for H. pylori multiple times its negative thankfully. I still have my appendix I have no idea in the bacteria side though I’ve had a ton of fecal tests all the Drs usually test for the common things. Nobody wants to or likely has the time to for a severe case to deep dive into them so they get pushed to the side and keep the money flowing. I have been looking into doing FMT or fecal transplant but it’s only approved for Pylori resistance. So it would have to be done on my own accord and what worries me is I have someone healthy around my age that would do it but if they carry any sort of pathogen for instance e-coli or anything and transmit it to me. Well it likely wouldn’t be good I have researched the process for how to do it but I’m just weary of the dangers. I really don’t have much to lose honestly I’m at that point.
As for the other system issues I’ve wonder if its liver, bile acid issue either transport or through liver or gallbladder production or release as my liver levels are always elevated, gallbladder malfunction, pancreas enzymes are functioning as they should according to my labs. I have no idea how to test for nervous system issues, hormone issues, thyroids good had it tested, digestive juices I’m guessing falls under a GI360 map? I have been considering doing that to test for what bacteria’s are inside my intestines. The more diverse the better if their good, I been trying to diversify my diet but its so hard being so severly malnourished and sick. If you know of tests to do to rule out some of your ideas I’m all ears and will note them down.
Sadly, all I know is what I’ve read here and there from sufferers. They too had issues finding doctors willing to go the deep end of research with them and only after years of effort did they succeed somewhat. I can’t bring up specifics since it’s all from memory.
Last resorts should be last resorts as long as it’s a guessing game. Because things can get worse if the guess is wrong.
Unfortunately, all I can give are more guesses.
If you haven’t already, you should look through any medicine you took more intensively or over longer periods of time and see if any possible side effects seem familiar. Might be an issue of that kind of toxicity.
The US healthcare system is so broken, overworked, privatized and ran through by insurance companies. Finding Anyone willing to go past the basic tests is or even treat you as a non drug seeker seems virtually impossible. Specialist are no more special than anyone else. I’ll browse through my meds, I’m aware taking one thing imbalances another. Nothing is without risk. Thanks for the help really.