I'm sorry if I can't remember this, but have you been tested for celiac disease?

Anyone with pernicious anemia does not have stomach acid. You NEED it! I don't have it either and haven't for decades. I don't have PA (I think), because the antibodies weren't positive. It hardly matters, I ended up with a B12 deficiency anyway.

I take Bluebonnet Betaine HCL. It's the one brand that has had consistent quality. I get mine at www.iherb.com

I've taken Betaine HCL since 1999 with no problems. Quite the opposite. I've had no GI problems since then! And I've had a colonoscopy which was completely normal.

Why don't doctors tell their PA patients about the lack of stomach acid?!!!

I take capsules, because, obviously, I don't have the stomach acid to break down tablets. It's the 650mg. capsules. With a small snack or meal, I take one to two. With dinner, I take two. But everyone is different. You could try taking one with lunch, for example, and see how you do. Make sure you tell your primary doctor what you're doing.

The gel coating of your stomach might not be great, although it could be fine. Do you eat fish? Walnuts? Good prostaglandins like fish, flax, krill oil, walnuts, etc. help to keep that gel coating healthy.

Since your stomach is basically being attacked by antibodies, you really need to focus on keeping it healthy. The GI tract health is essential for overall health.

Without enough stomach acid, your food can't digest and nutrients can't be absorbed as well. Undigested food can sit in your GI tract and, well, rot. You can have an increased risk of infection, allergies, inflammation, and cancer. It can lead to a leaky gut, and might lead to more AIs. And you probably feel like crap.

When a doctor says that you're a "complicated" case, it simply means that they don't have the time, inclination, or brain power to figure it out!!! Have you tried to see an immunologist?

I have a masters degree, too. I know how frustrating it is to watch your life crumble. That's why it's so important to figure out how to create a new life. To reinvent it. It might take some time, but you can do it!

Letting go of things you love to do is beyond hard. I can't take road trips, which I love to do. And there are so many other things I've had to let go of. But I focus on what I CAN do, and enjoy life as much as possible.

There are still days when I have a meltdown, and cannot handle that this is my life. It's not a "pity party!" Life can simply be overwhelming when you're sick. No need to add to it by beating yourself up by having NORMAL emotions!

If you can focus on doing as much for yourself that is healthy (i.e., getting enough sleep, eating good food), it can help to calm down the immune system. Meditation really helps, too. We are all basically "energy chambers" and increasing the good/happy energy really helps. Just think about how good you feel when someone says something nice to you, or does something to contribute to your day. You feel great, right?

It doesn't matter how many people are in NY. There must be some doctors there who can help to make your life better, by paying attention to what you're saying, running the right tests, and THINKING!

You might want to write down all of your symptoms. Try to put them in categories. For example, put the sensory symptoms in one list. Sometimes it helps doctors to see things in black and white.

Hang in there! And don't overdo things right now. I know that it's spring, and that desire to golf is strong. But you might need to put a few things on hold until you get all of this figured out. Not permanently, but if your health issues aren't fully mapped out, they will continue to be a problem.

I hope you can find a few doctors to help you!

Annie