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.
The test isn't common yet, and - sticker shock incoming - it cost me $550 out of pocket because naturally most insurances aren't going to cover it. I do think it was worth it though.
https://www.nowleap.com/the-patented-mediator-release-test/
One thing the test results (and the additional info included with those results) said was that you can actually feel better immediately after you've eaten a food that your immune system doesn't like while still feeling worse from it later. You can also (I have) experience a type of detox period after you eliminate the problem foods. So it helps to be able to start with a list of known bad foods and stick to the elimination of all of them for a few weeks before you decide how you are feeling from the change. It's no wonder that I struggled to identify what was bothering me when all that is true. Infuriating!
While the price is quite high. I'm willing to do anything. I struggle day to day so bad I can barely function around the house. Let alone be able to function in a normal capacity. Migraines that cause vision loss, can't talk, move. Such extreme pain I've never felt pain similar except for an open abdomen surgery I had waking up from being under with no pain meds on board. I am going to do some reading on this test and try to get one ordered. If I could narrow down anything at all as to which organ or why my immune system is on such high alert I am willing to spend. I don't have a limitless supply of money and thus don't want to blindly spend. This might very well be something that I will start with asap. Its hard for me to want to push on when my body has been broken down to skin and bones over the last 4 years. I'm a shell of who I was mentally and physically.
I really do understand. I'm not sure I've had it quite as bad as you have with respect to these inflammation problems, but I have other issues on top that together have made me question how much I want to keep living multiple times.
I wish we had better information on gut issues. I think a spine surgery and all the antibiotics they gave me with it kicked my existing problems into overdrive. That was seven years ago, and I've never felt healthy since. I think that my good gut bacteria has been damaged by that and prior antibiotic use, NSAIDs and food intolerances. I've adjusted everything that I can. I don't know what else to even try at this point. I'm better, but far from healthy.
I cannot tolerate NSAIDS or IBU. I'm so sensitive to foods, and medications its like my body is slowly rejecting everything. Pain meds I can't take because of super severe nausea. That's one of the worst symptoms I have regardless of food, medications, or migraines. Its non stop it never let's up its just various degrees from moderate to slobbering on myself puking. When sick which is almost daily its so severe I take 4mg and 8mg ODT as needed. Strongest I can get before IV meds. I feel for everyone who suffers and cannot get help. The systems fail us. Drs fail us. Its unfair but that's life. I wish you nothing but the best. I'm always here so long as I'm here. For the gut bacteria issues. I'm looking into FMT or some sort of probiotic help but Kefir is about all I can tolerate. Capsules seem to be ineffective so I doubt their efficacy regardless of brand. I have seen testing companies which you can do from home such as viome and others. But it seems GI360 map is considered more of a gold standard. It sucks we the population are starting have all these issues related to gut health and allergies/ intolerances becoming so prevalent. While the science is just starting to even begin the understanding of how the gut works. Its like we are all right before the cure.
How good is this test? Its out of pocket and 700 dollars pretax and any fees. I'm guessing it will come out to about 1000 dollars. I'm about to try to place an order through my Dr. And I am wondering since the price is rather steep. Do you think its helped in your diet and overall bodily inflammation? In a major way? Worth the price? Any info helps.
It's accurate in the 90% range. It has helped, and it was worth it for me.
Thank you for the quick reply. I go to see my Dr tomorrow morning. After you have went through the testing and I presume the diet changes. Is there anything I should do differently that you have learned you could have done better? Any other tests worth checking out? I'm beyond glad you told me about this test. I didn't think something like this existed. Would have helped me years prior.
When they send you the packet of test results, take the time to read the supplemental materials. I've already hit on the big points in my previous messages to you, but just go really slow with reintroducing foods into your diet. The included info suggests no more than one new food every three days. Also if two or more foods in the same category are in your test results, you should avoid the whole category. For me that was beans.
Good luck. I hope the test helps!
Thank you! I really appreciate it. It might be a while but once I get my results perhaps there could be some knowledge to swap.