In my first Learning to Live post, I talked about being diagnosed with an autoimmune disorder, and you can read about that here. Today, I want to talk about being diagnosed with gastrointestinal disorder and why I choose to eat gluten free. After I had my tonsils out, I had a hard time keeping food down, I had stomach cramping. I was not feeling better. The ENT I was going to realized there was more going on and sent me to see a gastroenterologist. That doctor did a few tests including an endoscopy,, to check my stomach. Weeks had past at this point, so if I had a cold or a flu, my symptoms should have passed but instead were getting worse. He could not determine what exactly was going on either so he referred me to a doctor at a local university with a medical school.
First Gastrointestinal Disorder — Gastroparesis
After seeing my new doctor, who we will call Dr. M, he reviewed my history and sent me to get a gastric emptying study done. This test requires you to eat a food with nuclear medicine in it. In my case it was oatmeal. The nuclear medicine did not change the taste or anything like that. After eating, you lay on your side on a table. A machine takes pictures of your stomach to see how long it takes for you to digest food. After an hour and a half, the nuclear medicine tech came in and told me they were going to end the test. I should have digested the oatmeal within 30 minutes and it still wasn’t digested.
The doctor also sent me for two more tests. A barium swallow, where again you swallow a barium shake (this was gross). X-Rays show how well you swallow and food goes through your esophagus, The third test he sent me for was an MRI of my brain to see if I had migraines.
When I saw Dr. M again, he advised me that I have gastroparesis which is where there is delayed gastric emptying. In my case, what would take someone 30 minutes to digest something in their stomach, takes me up to 8 hours or more to digest. I could handle this diagnosis at that point, but the doctor couldn’t figure out why this was happening. He also diagnosed me with migraines, and cyclical vomiting syndrome. He called my gastroparesis ideopathic. Dr M. is one of the doctors that made me really feel like an idiot – and yes all pun intended.
More Issues and Achalasia
As Dr. M told me there was nothing he could do but give me medicine to try to help, my symptoms started getting worse. (I apologize in advance for some of the graphic detail.) I started to become extremely constipated (like weeks) and regurgitating food, like when a baby spits up. Since Dr M. was no longer much help, I found a new Primary Care doctor. The new doctor was extremely thorough and he referred me to a GI specialist in his clinic. I visited that GI and he then referred me to the University of Florida – Shands Hospital, where I found some of the most amazing doctors with wonderful staff (and yes, it is all very confusing).
There, my gastroenterologist, Dr. Moshiree , started me out by running every test she could think of. I had another endoscopy done as well as a rectal manometry and a esophageal manometry to see how well these areas were working. Overtime Dr. Moshiree also ran a lot of blood tests and in turn was the amazing doctor that determined I had an autoimmune disorder. The damage to my vagus nerve resulted in the gastroparesis. She also diagnosed me with achalasia, which is the slowing of the muscles in my esophagus.
Since these diagnoses, I have undergone a couple of more tests and surgeries which I will get into in my next health post. I also came down with a bad case of colitis a few years ago and had to be hospitalized. I added this onto my gastrointestinal disorders list because it is recurring.
Learning to Live with Gastrointestinal Disorders
The first piece of advice I have is ask your doctor questions. Find out as much as you can about your problem so you are educated and know how to move forward. I have a large binder that has all of my medical records in it. I would take to every doctor I went to. This is definitely a synopsis of what I went through, but I have seen so many specialists and nutritionists I can’t remember all of their names. My ordeal has also spanned over many years.
It took time,but i learned to listen to my body. There was a lot of information I was given on how to deal with my gastrointestinal problems. I had to learn what was right for me. Being careful of the foods I eat is important. Certain things will make me really sick, like cauliflower, and some days or weeks on end I only have liquids or pureed foods.
I chose to go gluten free after having colitis and it has kept me from having as bad of an issue. One of the main things with gastroparesis that I have been told to stay away from are anything with a skin, seed or nut. I also try to stay away from red meat and high fat foods like fried foods. After getting colitis, a couple of doctors suggested I try taking gluten out of my diet. WOW, being gluten free made a serious difference in my life. I was tested for celiac which was negative. However, staying away from gluten has helped my digestive system out a lot and made me feel quite a bit better.
If you have any questions, feel free to ask them! I talked about needing patience in my previous post, and with any illness I honestly believe its something you need.
Part Two will be coming soon!