Picking up where we left off from Chapter 1…
Next, I did my research. My husband, being a Chiropractor, has a very different mindset than most MDs. He has instilled in me, to always search for a cause. Why? Why was I getting nauseas? Why did I develop terrible acid reflux? Why did my bowel movements look like I had digested NOTHING?! (Sorry if that is too graphic for you.) I finally looked up St. Louis’ best doctors and found a gastroenterologist that had raving reviews. I made an appointment and saw him late March. After 3 full months of agony, doubt, pain, and worry, I was ready for the worst. And honestly, I didn’t care, just as long as it was an answer!
Dr. Su walked into my room and closed the door behind him. He introduced himself and sat down. He pulled out a notepad and said, “Tell me everything.” He looked me in the eye, listened, jotted down important info that I WAS SAYING, and nodded. He asked a few questions and when I felt that everything that needed to be said was out in the open, he wheeled his chair really close to me and said, “Maggie, you’re really sick. And we are going to figure out what is wrong.” Tears welled up in my eyes…tears of joy. I didn’t even have an answer, but I was so happy that someone cared enough to listen to how I felt and wanted to help me get better.
Dr. Su gave me a few blood tests. A few weeks went by and I received a phone call from him. He said that my gluten sensitivity was high in my blood and he wanted to perform an endoscopy to check out my small intestines. I had heard of gluten intolerance before but never Celiac disease. I figured I would get a head start on a gluten free diet until my scope at the end of April. I was doing okay on my diet, but was unaware of how much food contained gluten. I was feeling better…but at this point in time, ANY progress was great in my eyes. It didn’t hit me that I might have a severe problem, until one Sunday at church. I had been doing well with g-free and figured one little communion cracker couldn’t hurt…WRONG! That gluten filled, piece of holy bread made me SICK! I knew that I was going to have to make some big changes!
My scope went well and confirmed that I had Celiac Disease. I was actually very excited at first! I came out of anesthesia with a smile on my face and my husband drove me to my NEW favorite g-free café. My doctor sent me home with lots of packets and papers of new information. I read up and found some overwhelming information. I had no idea that Celiac was an autoimmune disease, meaning that my body was attacking itself (particularly in my small intestines) when consuming gluten.
Gluten is a protein found in wheat, rye, and barley and gives breads the springy, elastic feeling that we all love. Why is a gluten free diet so limiting if it is only found in those 3 grains?…good question. Our country uses wheat as fillers and thickeners making it part of the ingredient list in MANY packaged foods. Cross contamination is another factor. The ingredients may be gluten free, but if it was processed on the same equipment as wheat, rye, or barley, I could get sick. If I buy a food that comes in a package, you better believe I’m reading every word on the label.
Celiac Disease: (Web MD Celiac Disease Health Center) says: With celiac disease, your immune system attacks the gluten and harms your small intestine when you eat these kinds of foods. This makes it hard for your body to absorb nutrients that keep you healthy. I love this discription. But so many people ask me, “What is the difference between celiac disease and gluten intolerance?” And here is MY opinion (remember I am not a doctor, and doctors are still learning about this condition): Celiac disease is when an autoimmune response is occurring in the small intestines along with other symptoms such as fatigue, brain fog, bowel problems and so on. Gluten intolerance is when you are having reactions to gluten in your own way (acne, bloating, nausea, brain fog, +295 other symptoms), but do not yet have the autoimmune response in your intestines. Notice, I say YET. Here’s an example: I look at gluten intolerance as the precursor to Celiac. Just like someone can be “pre-diabetic” before developing diabetes, Celiac can be developed if you don’t make changes and take care of it at the gluten intolerance stage. This is such a problem because so many people have no idea that their symptoms are due to gluten. Symptoms like acne, brain fog, ADHD, bloating, joint pain, constipation, diarrhea and so much more, are all ways your body could be reacting to gluten. 97% of people with Celiac still don’t know that they have it!!! Does this mean that gluten intolerance is not as “severe” as Celiac?…absolutely not! If anything, it is more important to find it at this stage! They go hand in hand, and both require the same treatment: a gluten free diet. Therefore, if your blood work (or especially a child’s) comes back with a gluten sensitivity, there is really no need to get a scope to determine if you have Celiac. Why? Because, both gluten intolerance and Celiac Disease have the same treatment. And many people do not want to undergo the invasive scope, especially with a child. If you are having other health problems (like me) or try the g-free diet and it does not help, you might want to get a scope or other tests done to check out what else could be going on.
I hope this helps clear up some questions…I have so much more to explain about how the next few months went down after diagnosis and how my lifestyle and PREGNANCY have been since being diagnosed. Stay tuned for more “Celiac Journey” posts.