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.
So, YMMV, but my wife has similar issues with a large number of issues. She’s not celiac (and doesn’t respond badly to bread), but has very similar issues that you have (she responds similarly with vinegars, some oils, and cheeses).
She swears by low dose naltrexone. Took it for a week until it started working and it’s been a game changer. Prior to LDN, we had an ER visit every month so she could get dilatud (sp?) if her other medicines didn’t work (hyociamine was the “last ditch” medicine). We haven’t had an ER visit since—almost 2 years.
Sorry you experience this and I hope you get this resolved. If you do go the LDR route, I truly hope it works for you.
I will look into this! I believe you mean the pain medicine dilaudid please clarify? And the second medicine I believe is similar to bentyl also called dycyclomine which I have for intestinal spasming. I wish your wife the best truly. I’m in the hospital far too often. I will be noting and looking into naltrexone. Thank you for mentioning.
Edit. It appears naltrexone is an opiate addiction medicine which would make sense why she would have wanted pain medicine dilaudid. I cannot even take pain meds OTC or prescribed. The number one side effect is nause, headache. Perhaps I misunderstood. Clarify if you could please.
She would get into a cycle of pain -> inflammation -> pain -> inflammation that would not stop until she got dilaudid which would stop the pain.
Naltrexone, while normally for addiction, in the low dose taken isn’t really helpful for addiction.
She said she doesn’t experience these side effects. It’s worth noting that any side effects experienced in trials must be listed.