Medical help needed. Willing to try anything.
Medical help needed. Willing to try anything.
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 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.
This is a long shot but worth it at this point, what if its your environment? meaning something external is poisoning you?
I've moved completely hours away from where I have been for last 4 years. I only have reactions when I ingest something such as food or drink. I've considered all environmental factors inside and out. Air purifier in my room, pH balanced water. Seperate cooking equipment as in only my own cleaned thoroughly and silverware rinsed during use nothing touching unclean surfaces or its discarded or rinsed. Single utensils and dishes repeatedly washed and reused. Foil for disposable cooking surfaces like oven. One of my organs isn't functioning right or my immune system is causing a reaction to nearly all foods. I've tried probiotics such as Kefir. Medications of various kinds I'm even considering immuno-suppresants which are a devils bargain. Different Supplements and gotten all my vitamin levels checked alongside daily multi. Liver panel done for various conditions and metabolic panel. Its like my immune system is giving me a Celiac symptoms but from GF foods. Even foods I used to consider safe for times of severe sickness. Its as if my body is completely rejecting almost all foods. I only drink water, body armours, drip drop packets in water. No other drinks.
Since you mention vinegar causing problems, have you looked at histamine intolerance?
I have read about it online histamine intolerance as well as sulfite intolerance. I'm not sure what foods to test these. I will look online and make a list then try some if them soon as I can. I will report back. I only consider info from reputable sources I'm no fool in researching online. I'm not a Google Dr.
It's something I've struggled with for many years and it's hard to find good info on, this is a well regarded source:
https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
I personally avoid high histamine food and take a Dao supplement (naturdao) before each meal. It's made a massive improvement in my gut health and reduced my migraines significantly.
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!
Throwing out some ideas wildly, so don't jump into them because they're not vetted.
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Gut bacteria flushing or transplant. - If it's the bacteria that causes it, changing it might help.
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Appendix tomfoolery - it might be storing problematic bacteria, if you haven't removed it already.
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digestive juices mutation - depending on diet, they might change to compensate and become unrecognizable.
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nervous system overstimulation - a kink on the pathway in the right place might be sending wrong signals everywhere.
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circulation system traffic mayhem - an infection or something else may possibly be hitching a ride alongside nutrients, maybe to eat them.
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foreign object stuck in digestive system walls - If you swallowed something that couldn't be digested or pass through, it would eventually be covered by the walls of your stomach or intestines, sort of like a bump. Over time it can slowly leak toxic residue.
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tick or other parasites - a tick can change itself to look like a mole and permanently live off its host, dumping its waste inside the bloodstream. A tapeworm can break through the intestinal walls and latch itself to an organ. Other stuff can also do weird shit like that.
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hormonal gland imbalance or something - hormones are fickle and treacherous creatures. A mere momentary whim of theirs can screw you over for life.
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aggressive pylori - those fuckers are horrible tiny goblins that can do anything and everything. Fucking mythical beasts the whole lot of them!
Edit: Forgot one.
- lymph nymphs - a.k.a. lymphedema
Thank you for the detailed post. I just woke up and have to get moving. I will respond within and hour or two. Thanks for throwing stuff at the wall I'm willing to investigate anything. I've had 5 or more EGDs and Colonoscopies over the last 8 years. I can at least check off foreign object. I will be back to this comment.
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.
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One thing I discovered when I was struggling with mystery stomach ailments was that testing for SIBO/IMO is rarely done even though the treatment can be as simple as a course of oral antibiotics. This is because the test involves drinking a vile sugar concoction and then breathing into a bag every 20 minutes for 4 hours. My gastro didn't do it, I had to ask for the test myself and then travel to a different city to get it done. You've said you've had a ton of tests (I did too) but bizarrely a SIBO test just isn't one of the common ones. I ended up having IMO.
Its called a lactilose manitol test and I have had it. My entire state didn't have the equipment. I had to go to another state to get it done. I tested positive on the first bag. The second was higher and by the 3rd they knew based in the results so far I had it. Though I finished the test. Over the course of time my GI specialists only knew to prescribe antibiotics. When they didn't know how to fight it they referred me to another GI specialist. Which is why I went to 3 different ones and so many bottles of antibiotics. I was on 2 for 2 weeks then switched to 2 different ones for another 2 weeks. Did that for 15 rounds over a year and half. Sibo is wildly not understood. Not even recognized as an issue. Most diagnose it as IBS. Which is just not true. If you've had SIBO then you'd know IBS is not SIBO. Its scary and cruel to face it. Its what nearly killed me. They gave me 4 to 8 weeks to live. I still don't know how I survived.
I have a chronic illness exasperated by inflammation. Idk if it's relevant to you, as I'm unsure of your specific diet, but this has helped me.
No animal products. Includes milk, egg, animal protien. No chocolate. No sugar. No coffee, but looks like you aren't drinking coffee anyway.
No alcohol. No gluten. No caffiene. No nicotine.
This helped me from having full left side numbness and intense pain. Now I get tingles and twinges, but am functional.
These things help with reducing inflammation.
Previously had neurologists look at me. With TENs unit assistance and diet changes, I don't need medications.
I also take vitamins. Tumeric can help reduce inflammation.
Again, more simply: No animal products, no gluten, no sugar, no caffiene.
Good luck.
I know almost nothing about Celiac but on the hydration problem, how much salt are you getting? Body armor has some electrolytes but not much and the green tea and water will have trace amounts at best. If you aren't eating well you may be low on essential salts which would make your body flush out water instead of hanging on to it. An electrolyte heavy drink like Gatorade or Pedialyte might help.
I've recently been incorporating higher salt into my diet as in this week. I don't usually add any table salt or pepper or sauces or spices to my foods. I eat a miserable bland yet super healthy diet. Fresh Greens, fresh fruits, low carb, low fat, higher protein diet. I've switched from body armours to Drip drop packets yesterday. It took 4 drip drop packets throughout the day to even remotely keep me hydrated. Urine will be clear but I'll be dying of thirst, nauseated horribly, brain burning, head feels like my brains inflamed, urine panel came back good. No medications are to blame. Mostly as needed meds. Body armours used to do good for last few years. Now I need something stronger and I don't know why.
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.