Mystery abdominal pain

I have had persistent upper central abdominal pain for years. I noticed it around age 16 or 17. It has been written off by a number of doctors as anxiety. But I don't think that is the issue. I am now 24 and it has gotten progressively worse.

I have seen a GI specialist and dieticians. I have gastritis, IBS, GERD, and many food sensitivities. My diet is severely restricted and even eating within those restrictions I still have many unresolved IBS symptoms, the most persistent of which is upper abdominal pain which gets worse after I eat and if I wait too long to eat. The pain is aggravated by some foods, particularly high FODMAP foods, sugars, gluten, and dairy.

What helps is liquid antacids, baking soda in water, or alkaline water for reflux, alkaline food and water for bloating, ground flaxseed for diarrhea, slippery elm, and acetaminophen for pain when nothing else works. I use acetaminophen sparingly (once a week or a few times a month) and do not usually use it as normal pain management, just when nothing else works and I can’t think about anything except the pain. Water generally helps, but too much water can also cause pain and painful abdominal bloating. I have tried prochlorperazine and metoclopramide which helped with the nausea and stomach pain but came with some other intolerable side effects and I could not continue taking them. Chewing fennel occasionally helps after meals because it is alkaline.

I am eating no gluten, no dairy, low sugar, low carb, low fat, a lot of vegetables and proteins and certain carbs and fats in moderation. It significantly levels out the bloating, gas, diarrhea, constipation, nausea and pain. However the pain still gets worse after meals and to a lesser degree, also bloating and nausea.

I don’t drink alcohol (aggravates stomach pain a LOT) or coffee, I don’t smoke, no caffeine. I don’t have H pylori or ulcers.

I do eat carbs on a regular basis but I try to keep it within reasonable limits of tolerance. Sometimes the satisfaction outweighs the physical symptoms but I have to pick my battles because eating one bite of the wrong thing can cause hours of pain.

I recently got off the PPI that I was on for 3 years to see if that would help. I eat more alkaline food now to keep acid levels in check otherwise I get reflux and the pain gets worse. Things off the med are not much different, though I do get reflux more often and the pain may be a bit worse. Maybe I’m just noticing it more. I don’t think long term PPI use is a good solution and I would rather not be on it. I have a feeling while I may have irritation due to IBS or acidity which can cause pain, that is not the only pain going on.

I’ve tried Iberogast, IBgard, ginger root, chamomile, Swedish bitters, turmeric, mint tea, peppermint capsules and they all irritate my stomach and make the pain worse. I’ve also tried antidepressants and other psychotropics but they all came with nightmare grade side effects so i didn’t take them long. Sucralfate made me extremely and painfully bloated. My diet is extremely restricted as it is and having eliminated just about everything I can, I don’t think it actually has to do much with what I am eating as much as that I am eating at all.

One day a meal may be less aggravating. The next day with the same meal I’ll have pain for hours, reflux, and bloating. My ability to tolerate food comes in cycles. Some days I can tolerate some foods, other days for whatever reason, I can’t. I have to cycle out foods for variety and symptom management but generally have some core foods, mostly proteins and veg that I generally tolerate well. But even when I stick to the absolute least irritating foods, I still often have symptoms.
I’ve had an abdominal ultrasound, gastric emptying study, endoscopy, and colonoscopy. Nothing significant there. I get labs drawn about every 6 months from my GP. CMP14 (Routine or Stat), a couple out of range but nothing requiring a workup and everything else within normal limits, hemoglobin A1c with eAg/MBG estimation, vitamin D; 25 hydroxy, testosterone, free (direct) and total, magnesium serum, phosphorus serum, prealbumin, and TSH all within normal limits.
Here is a summary from my last GI appointment “Patient's symptoms have plateaued at this point. Our work-up to include thus far has been normal gastric emptying study, normal thyroid labs, negative celiac serologies, normal fecal calprotectin, unremarkable colonoscopy and endoscopy, I recommend patient continue seeing his dietitian and to follow-up with us as needed.”
I also have upper back (between shoulder blades) and neck pain but I’m not sure if it’s related. I mostly notice the back and neck pain when I’m sitting so I assumed it was postural but I don’t know. I also have constant low grade nausea that is aggravated at the same time as the abdominal pain–because of food or a lack of food. Also extreme abdominal tenderness. Any amount of pressure is painful. Has been for about 3 years now. That's when I went to the ER for the stomach pain, got the abdominal ultrasound but found nothing, a referral to GI specialist, endoscopy found benign gastritis, and started the PPI which I have since stopped. I can't lay on my stomach because of the pain. And within the past month or so I can't even lay on my side when I sleep because that has become uncomfortable as well. My ribcage squishes into my painful upper abdomen if I lay too far sideways. It's the same on either side.
The pain has become a quality of life issue and impacts other areas of my life.
I am going to see another GI specialist to get a second opinion and have an appointment in a couple of weeks. But until then, what do you think this could be?

I’m also new to the forum so I’m not exactly sure how this goes. Does anybody have any recommendations or a story similar to this? I have an idea that it might be pancreas or gallbladder related or both but nobody can seem to find a cause.