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.
Total laymen drawing on my own experience. I recently had some GI struggles and all the accompanying medical testing and interventions to go along with it. I’m sorry you’re going through this. You’ll be in my thoughts.
If you can get into a migraine/headache clinic, add a neurologist to your list of Drs. They sometimes have great insights or treatments that might help with the migraines. Anecdotally, a combo of a beta blocker, nerve block injections, and imitrex paired with reglan really improved my symptoms. For me it’s stress and weather primarily so I can’t do much more without drastic life changes.
Have you tried keeping a good diary on something like the Fig app, that will cross reference ingredients so you can see if there’s maybe another allergy or trigger?
I have a neurologist on my list of Drs I’ll be calling tomorrow. I keep a strict food log. I’m highly knowledgable in manufacturing processes and cross contamination factors. I trial and error one new food per day. Too many days if being sick I have to take a break. Although I’m pretty intolerant to nearly all foods. My migraines seem to triggered from dehydration, or food reaction not allergy but I’m guessing chronic massive inflammation, I had a recent surgery and the surgeon said my body has a massive inflammatory reponse which resulted in major swelling even on 10mg prednisone for 3 weeks. My aura comes then my brain starts burning. My eyes pulse. Severe nausea. Rapid dehydration. They last for days slowly winding down once a severe migraine hits. Usually when I wake up after not drinking during the night if I make it that long. I’m constantly on the edge of one unless I’m drinking water or electrolytes in high quantity.
I would guess you have a tyramine intolerance causing some of your issues
How can I trial an error this? What foods are ultra high in tyramine? I will test it for a few days. And report back.
Feel free to DM me btw, especially if you’ve ever had weird blood test results (besides what was listed) or weird reactions to meds or drugs or other foods. Including intense cravings.
You don’t really want to “test” this with something like a “tyramine challenge,” because it can cause brain bleeds and high blood pressure (hypertensive crisis). It’s pretty vital to not eat too much tyramine if you have this for that reason. However, I think you’ve been having these crises, which activated the RAAS and that’s what’s maybe causing your issues with thirst and urination.
https://en.m.wikipedia.org/wiki/Renin–angiotensin_system
What you’ll look up are diets for people on MAOIs, and eat that for a week or so to see if you feel better. Basically, if you have tyramine intolerance, it’s like you’re on a natural MAOI at all times. So if you’ve ever had weird reactions to things like SSRIs or SNRIs, that could be why. MAOIs interact with many other drugs. Tyramine diets and histamine diets have a lot in common btw, except some fruits like tomatoes and strawberries are high in histamine but low in tyramine. You could eat those to see if you need both diets or not (I saw others mentioning low histamine diets).
You also want to avoid phenylalanine, which is an artificial sweetener often in gum and dental products and hydration packets/energy drinks. It converts to tyramine. Tyramine and phenylalanine are ubiquitous in high protein diets too, so avoid high protein stuff like carnivore diet. You want to do a relatively low protein diet while testing to see if you’re tyramine sensitive, and then you can increase daily protein from there to see how you feel.
I have celiac and tyramine intolerance so what I DO eat are a lot of fruits and salads. I can have SOME tyramine just not a lot - basically 4 red olives in a sitting will give me a tyramine migraine. So I can eat like one or half of one olive. I can eat a little bit of hard cheese (I tend to stick to chevre goat cheese though). I can have a little bit of white or rose wine. Fermented stuff is usually high in tyramine, including vinegar. Don’t eat nutritional yeast, most broth, or ESPECIALLY stuff like Better than Bullion (some people will nibble meat salts like this for the salt but it has tyramine).
Please note that if you have tyramine intolerance, you might be much more sensitive to tyramine than me. Or much less. You might not be able to eat even 1 olive, or maybe you could eat 6.
https://www.sciencedirect.com/topics/nursing-and-health-professions/tyramine
Another issue is that your celiac could be causing an imbalance in your fat soluble vitamins, giving you the symptoms of vitamin a toxicity. If you aren’t getting enough vitamin e, d, and k (common with celiac) to balance out vitamin a, it can give you similar symptoms to vitamin a poisoning. Sadly, your vitamin a is probably also low from the celiac as well. This could be why your liver is having issues; vitamin a toxicity is hard on the liver.
For my situation, my celiac made me crave fats which made my tyramine migraines really bad (ate a lot of meat and cheese). Supplementing esp vitamin e really helped with those fat cravings.
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.
It appears naltrexone is an opiate addiction medicine which would make sense why she would have wanted pain medicine dilaudid.
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.
The number one side effect is nause, headache. Perhaps I misunderstood. Clarify if you could please.
She said she doesn’t experience these side effects. It’s worth noting that any side effects experienced in trials must be listed.
I’m really sorry to read about your troubles. I’ve had some similar issues that I’ve never been able to fully eliminate.
I had a Mediator Release Test done to help see how my immune system reacted to various foods. It turns out a ton of what I used to eat causes me inflammation. It wasn’t just gluten. However, even after eliminating all of the foods on the test results, I still have a fair amount of inflammation. I’m probably going to have to start a full elimination diet to see if I can identify anything that didn’t show up on that MRT.
One thing that I learned from the test results is that introducing one new food into your diet per day is too much, too fast. It can take several days before you start feeling bad from something you’ve eaten. Maybe considering going slower, like one new food every three days instead.
I’m so sorry you’re dealing with this. I hope you improve soon!
I didn’t know such a test existed I’m open to all tests and ideas. I will take note of this and get one ordered, if you have any questions or info I may not know by all means ask or speak up.
I tend to notice my symptoms at least the onset fairly quickly within an hour of ingestion but it does seem like it can take days sometimes to notice or even recover from a single bad meal. I used to bounce back quick in about 2 days or so now it takes atleast a week. I’ve been on an elimination diet for longer than I can remember. I started from one food item per day and rebuilt my diet from the ground up. But since moving all my usual grocery stores are no longer nearby so my diet has had to change, don’t even get me started on how high the prices are. For instance different brands and thus ingredients have changed. As you might know sticking to certain brands and food items is vital.
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!
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.
