E.B.
My daughter has Gastroparesis (and POTS, too), and these are issues we deal with every single day.
Gastroparesis is a paralysis of the stomach muscles. Normally, when food passes through the mouth and esophagus into the stomach, the stomach nerves sense the presence of food and begin to churn. Appropriate acids are released, and the food is broken down, and the stomach sends the food to the intestines where the nutrients are absorbed. With gastroparesis, the stomach doesn't respond to the food sensation, and the food can ferment (creating a sour taste) and the person can feel uncomfortably full (eating an apple can make the person feel like they ate a whole apple pie plus an entire quart of ice cream). Food can remain in the stomach for extremely long periods of time, and nutrients are wasted and not absorbed, because it's the intestines where all the nutrition is absorbed. There can be abdominal distention, pain and bloating.
Gastroparesis can have a number of causes: Dysautonomia (a malfunction of the autonomic nervous system, which is the part of us that we don't voluntarily control, such as breathing, sweating, blinking, digesting...), injury or damage to the Vagus nerve (surgery can sometimes nick the vagus nerve, or damage can occur after viruses like Lyme Disease, shingles or other viruses) or it can ideopathic (meaning cause unknown). Try to think back to before you had Gastroparesis and POTS and see if you can remember a serious viral infection. That might give your doctor a clue.
There are three medications that can sometimes help Gastroparesis. Domperidone is one, but it's not sold in the US. It's illegal to purchase or sell here, but it's not illegal to buy it from the manufacturer and have it shipped to you, and it's not illegal to possess it here. Erithromycin can help, but must be taken for an extended period of time (yes, the antibiotic). Also, Reglan can help. My daughter is severely allergic to Reglan and failed both Domperidone and Erithromycin trials, so those aren't an option for her. A major surgery option is a Gastric Stimulator, which is kind of like a pacemaker. Medtronic makes them, and their website (you can look them up online) can help you find a surgeon who could determine if you're a candidate.
Gastroparesis is diagnosed by a Gastric Emptying test. A small amount of a tasteless product is added to scrambled eggs or other soft food, and that product shows up on xrays. The patient eats the eggs and over the next four hours, periodic xrays are taken. The amount of food which remains in the stomach is calculated and compared to a healthy stomach. Also, an abdominal MRI is often used to look for structural abnormalities and to determine the amount of food that remains after eating. Other tests include an EGD (esophagogastroduodenoscopy), which involves inserting a small scope through the mouth down through the stomach and small intestine, and sometimes taking biopsies along the way. It's done under sedation and doesn't hurt. My daughter just had that done, plus a Camera Endoscopy, which involves swallowing the most amazing teeny tiny camera in a capsule the size of a regular vitamin pill. She wore a small computer pouch and a Velcro belt for 24 hours and the camera sent hundreds and hundreds of pictures and video of its trip through her digestive system. We only got the results of the first 3 hours so far, and at that point, the camera had not left her stomach, even though it was completely empty due to only drinking clear liquids for 24 hours before the test. It should have taken about a half hour. We're waiting for the entire test results this next week.
Some food ideas: Ensure makes a hospital-grade product called Therapeutic Nutrition. A qualified medical nutritionist (not a vitamin salesperson) can help you with diet suggestions, and to find out how to obtain the Ensure Therapeutic Nutrition. It doesn't contain iodine.
A soft, pureed, liquid diet is best. You should own a good blender like a Vitamix. And consider a low-residue diet. Residue is different from fiber. Picture a glass of milk that someone just drank. You can tell that there was milk in the glass, because of the residue clinging to to the inside of the glass. To put it bluntly, residue is the remains of food that you can see in bowel movements (corn kernels, tomato seeds, stringy remains of a tough cut of beef or celery sticks). We do not and cannot use residue. And foods that are high in residue (corn, unpeeled vegetables, beef jerky, beef brisket, unpeeled tomatoes, seeds, nuts) are difficult to digest. A low residue food plan involves peeling everything, avoiding raw foods, cooking foods well, and (this was the hard part for me because I cook very healthy meals without processed ingredients) white rice and white bread and low fiber foods. But it helps. Small meals of soft foods, pureed soups, and low-residue foods can really help.
Also, to help both your POTS and gastroparesis, a homemade roasted bone stock is easy to make and easy to digest, and full of nutrients. Use the bones from a couple of roasted turkeys or chickens (or ask the meat manager for chicken and turkey backs and necks - you can use several pounds of bones) and place the bones on a sheet pan. Roast them at about 425 degrees for about an hour, until the bones are a deep mahogany color. Put the bones and any drippings or pieces that fell off into a very large pot of water (at least 12 quarts). Simmer for a couple of hours, then remove all the bones and pieces. Turn up the heat and cook the stock until it's about half the quantity that it was.
Then drink a cup of broth that you've added good quality unrefined salt to. Unrefined salt doesn't contain iodine, and it hasn't been bleached and cooked, and it contains minerals. A few examples are Redmond RealSalt, Celtic Grey Salt and Himalayan Pink Salt. Redmond is easy to find and their website is very informative. They have a lot of info about unrefined salts, iodine, and necessary nutrients.
And, because POTS patients need lots of salt (yes, it goes against normal teaching, but Johns Hopkins University, and the Mayo Clinic, and electrophysiologists who understand the science of POTS agree that lots of extra salt is imperative for people who have POTS), you can get good healthy stock and unrefined salts in one mug!
A great source of help, support and ideas are Facebook closed groups (meaning you have to ask to join; will be asked to abide by some basic guidelines like no profanity, no selling products, no "miracle cures" that are obviously scams, and no insulting other group members; and your friends that are on your Facebook page can't see what you're posting to the group. It's private. I am a member of two: Gastroparesis, and Gastroparesis-Friendly Recipes. They have been absolutely wonderful and supportive and encouraging and helpful. Just type Gastroparesis into the search bar on Facebook, and look for "closed group". Ask to join. There are POTS groups too
If your gastroenterologist isn't familiar with Gastroparesis, and if you haven't been referred to a certified medical nutritionist or dietician who specializes in medical diseases, then you must seek those specialists out. If you haven't had an MRI, a proper Gastric Emptying Test, and EGD, and if you haven't been informed about the possible medications and haven't got nutritional counseling from a nutritionist who works with your GI, then you have options to pursue.
Please feel free to PM me with any questions, or if I haven't made something clear.
