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 know someone with similar issues, although they were not celiac. They had a multitude of things wrong with their gut triggered by an H Pylori infection that put their entire system out of order. The inflammation, nausea and extreme thirst were also a thing for them. I'm not in the medical field at all, but maybe an infection and inbalance in your gut biome could be causing some symptoms.
I went through 15 rounds of antibiotics 1 to 4 bottles per month of various kinds to not become resistant 2 years ago fighting sibo. It nearly killed me and altered my body in horrible ways. I was losing weight so rapidly 2 to 4 pounds a week the doctors gave me 4 to 8 weeks to live before my organs would be shutting down. I'm doing slightly better on that front sibo is gone. But something in my body is wildly off since and its breaking me down to the point of not being able to function anymore.
Wanted to add some more information after talking to him again. He had very low stomach acid after dealing with the infection and they gave him drops to take before eating that were a massive help for the inflammation. He also took mastic gum, which helped out a lot too. He started off going from Dr to Dr and eventually found a holistic leaning (not anti medicine or anything like that) Dr's office that was willing to listen to him and was less dismissive of his concerns. The holistic Dr. was the one that brought up the idea of stomach acid. Again, I'm not sure if any of this relates. As you said, you are pursuing every possible solution. Hope this is helpful. Or you can at least rule more things out.
I have noted down to do some reading on mastic gum. Any idea what the drops were? I don't think low stomach acid is the cause as sometimes I feel like I have too much acid. I'm pretty good at managing acid issues. Like no peanut butter past 6pm lol. I have issues digesting fatty meals.
Biociden Remove are the drops. Apparently, it's common for a lot of people to think they have high stomach acid, but the burning is actually low stomach acid. Because his stomach was always burning and he was drinking so much water, he thought it was high. Hope this helps!
I have noted this down and will do some reading about it. Thank you!