Chronically ill without diagnosis and don’t know what to do next

@beanie300 What I don't see in your tests anywhere is gluten intolerance or Celiac disease. You describe a lot of GI type pain, joint pain, skin rashes, brain fog, numbness/tingling, mouth ulcers, nausea, diarrea... that collection could be a gluten problem. Your description gives so much detail and shows how much work you've done to try to figure this out. A lot of doctors only look at things inside their own specialty, so maybe they are missing this. You can test yourself for this if you stop eating all foods containing gluten. You need to study to do that as there are many hidden glutens in processed foods. If you eat plain meat and veggies for a few days with no spices or sauces, and no products made from grains (except rice or corn which are gluten free), you can see if you feel better. I can't eat gluten or I get very ill. I took gluten out of my diet 20 years ago when no doctor would test me for it and a lot of doctors didn't believe it was a real problem and my symptoms cleared up immediately. Also know that just because there are gluten free junk food products now, that doesn't make them healthy. Sugars and processed carbs are just that and can promote diabetes with or without gluten. You may know in just a couple days if you eliminate this from your diet. That could be part of what could be wrong, and it would be a start. Sometimes it can be a number of things to discover in steps to get back to health again, and if you get one problem out of the way, the others may be easier to deal with.

Here is a link to the Celiac Disease Foundation about the symptoms. https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/ and Mayo's link about Celiac disease https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

I know that the large intestine passes on the left side on it's way to the rectum, and if that's inflamed, you could feel pain there. Celiac disease is an inflammatory condition where the body attacks the GI tracts because of gluten (sort of)... it's actually the protein gliaten which is attached to the gluten that causes the trouble when they named this, but at first they thought it was gluten. These are found in almost all grains. Humans did not evolve to eat grains, but at the time we cultivated grains as a food supply, it allowed our species to proliferate. There is a good book about all this called "Going Against the Grain". Reading that changed my life.

Thank you @jenniferhunter it sure couldn’t hurt to try! I am desperate at this point. It doesn’t sound like something that will fix all of my symptoms but I doubt anything will at this point and it would be a great first step if it does help! I have a friend with celiacs so she is gluten free but I honestly hadn’t even considered that it could help my symptoms.

@beanie300 I know what you mean. I didn't believe it at first either. Gluten causes autoimmune issues and makes a person at greater risk for other autoimmune diseases and cancer of the GI tract. Ask your friend about her experience. Many of your symptoms could be related to gluten and wheat allergies. I had a lot of these myself. What convinced me is that I didn't eat any gluten or bread (kind of by accident), for a few days, then I ate some leftover bread from a restaurant and in 10 minutes, I felt like a load of bricks had been dropped on my head, I had asthma, and could hardly breathe, and a bad headache, and trouble staying awake. My husband would get scared and want to send me to the emergency room because I could not stay awake long enough to use my asthma inhaler at about 30 minutes. All of that within minutes of eating bread made from wheat. Then for a few days, the GI disturbances that followed. This is so easy for you to test and you can change your life right now if this is the problem.

Well I will be sure to give it a try. Thank you for the advice @jenniferhunter I’ll let you know if it helps.

Dear @jenniferhunter in reply to @ beanie 300,
I am also supposedly on a Gluten Free diet; as I was suffering from Migraine Headaches, asthma, epilepsy, and great difficulty staying awake! However, my friend told me to stick to my diet, because I now realize the connection between the gut and the rest of my body, including my hair, skin, and nails! I recently bought a book entitled "Paleo in 28" by Kenzie Swanhart of CaveGirlIntheCity.com 4 Weeks, 5 Ingredients,and 130 Recipes! The book is great, and has really given me so many new recipes; which are HEART HEALTHY and absolutely DELICIOUS!
Good luck and I hope you feel better soon!

Glutin free are you allowed meat? It is difficult fir me. I live in the best of the best Independent living.they call us a retirement community. The chef offers many options. But it is difficult fir me. I tried ham and pea soup and was sick for a day. No pork for me. I hate it as all the good food includes meat.

@oregongirl Gluten is a plant protein in grain, and not in meat, however if that meat is ladled with gravy that was thickened with wheat flour, there is your gluten. Gluten can be in seasonings, in vinegar (if made from wheat), vanilla, etc. If you have plain meat that wasn't cooked on the same spot on a grill where they seasoned something, it will be gluten free. Ask them to use a different clean pan to cook your food. You have to ask questions because a lot of people don't understand and put seasonings in there by habit, or a pickle on the plate with gluten containing vinegar, or the food is cross contaminated by a serving spoon or the grill. Soups can contain flour as a thickener. Ask the chef to see an ingredient list, and keep a journal of what makes you feel ill, and then you need to find out what is in it. Keep a list of what you are allergic too because that is the only way to figure it out unless you want to go through food allergy testing with a doctor.

Hi, Sorry to hear about all those problems. My wife has had a lot of those symptoms and yet her blood tests came back negative. Finally at John's Hopkins in Baltimore they diagnosed her with MTHFR, She has a double gene mutation which makes her allergic to all foods enriched with folic acid. Most breads are enriched. Most pasta are enriched. Some white rice is enriched. This is methyleneterahydrofolate reductase or MTHFR. Elevated levels of homocystines in the blood. Her normal blood levels were fine but the cells were not getting the B vitamins since they were blocked from getting from the blood to the cells by the MTHFR. You can google MTHFR for more information. This is a gene blood test instead of a regular blood test in order to determine if you have that. There are two kinds of MTHFR. It is inherited and both her parents had it but showed no signs but she got both genes so was worse. Her parents also grew their own food and nothing was enriched in those days. Again, her present diet is fresh vegetables, meat and potatoes. A lot of people can minimize symptoms by going on a gluten free diet since glutens are enriched. Gene Position C677T. She is reading off some of her medical records. A1298C is the other gene. Once she stopped eating enriched foods her brain fog, chronic pain, tiredness, etc. High homocystine levels are often an indicator. 23 & Me gene testing kit can test for it if the doctor won't test for it but a doctor needs to read the results. She takes a folate for that and NOT a folic acid supplement. Folic acid=enriched which is bad. Hope that is another avenue for you to investigate.

I chose to read your post, bc the subject line sounded exactly like what I'm going through (except that, when I got to the end, I discovered that I'm almost twice your age). I say that to say that over the years, I have done a lot of research on what's going on, what it could be, what tests to do to find out, etc.
First, the human body kind of responds to whatever is wrong in very similar ways. The system must be determined first (so you know which specialist to see), the specialist should (theoretically) know which primary tests to run to find out what direction to take further tests to fine tune a dx and be able to tell you exactly what is going on and what to do about it. Unfortunately, we (ppl, Americans) are living longer and are sicker than we have been.
The second thing I wanted to say was that the first few things you said sounded to me like an immunodeficiency disease.
I hope you find answers!

Hi, here is an article on this that I mentioned before. The blood test for this is a microneutrant blood test. Something to consider. Best wishes.