The subject of gluten can set off flame wars on Facebook in an instant. There is evidence that gluten may be problematic for many people, in varying degrees. Gluten intolerance can be quite hard to diagnose which leads to a glut of people experiencing gastrointestinal problems saying they are gluten intolerant when maybe they aren’t. Then add in the folks that simply think eating gluten-free is healthier regardless of symptoms or not and it stirs the pot.
Regardless of what you may think of gluten intolerance and people eating a gluten-free diet, there is a small section of the population legitimately sickened by gluten. Celiacs. Celiacs like me. I was diagnosed in 2014 at the age of 36. This is my path through the rise of symptoms to diagnosis and now seven years gluten-free.
Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine. When a person who has celiac disease consumes gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body. Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders, as well as osteoporosis, infertility, neurological conditions and in rare cases, cancer — — The University of Chicago Medicine Celiac Disease Center
In the Beginning: Pain
I’m your average guy, I like my sandwiches and pizza and up to the time diagnosis I was eating one if not both of these most days. If not a sandwich or pizza it would be pasta. Fair to say I was a wheat-aholic. On a day in June 2014, I had my typical two sandwich day and by the end of the day, I was in unbearable pain. I left work early because my stomach hurt so much I thought I was having a gallbladder attack or maybe something worse.
I present this like it just suddenly came on and just like that I had Celiac Disease. No, that’s not really how it happened but it seemed that way. You see, for many, the symptoms slowly creep up over years before they push you over the edge. In fact, I had been taken to the Emergency Room several times as a kid with stomach pain that could never be explained. My mother was told I just had anxiety and maybe I should be given some pills. This was the early 80’s before most doctors knew what Celiac Disease was and there weren’t any tests available to diagnose it. Sadly, I think Celiacs in those days just suffered from the illness and were labeled hypochondriacs. You know everyone has chronic bloating, abdominal pain, tingling in their extremities, and any of the other 200 symptoms associated with Celiac Disease.
So, no, this wasn’t exactly new but over the years I just began to think this is normal. It’s normal to have stomach pain and bloating constantly. After all, I went to the doctor and was told there was nothing wrong with me. But not this time, this time was different. This kind of pain wasn’t like anything I’ve experienced before. I’m not one to run to the doctor at first signs of a problem but this truly scared me, so off I went.
Speaking of symptoms, my initial symptoms were just bloating, gas, and stomach pains. As time went on I began getting joint swelling so bad I could hardly get out of a chair. I had chronic headaches, weird tingling episodes all over my body. Constant nausea set in. Then fatigue came on and that’s when I was diagnosed and went gluten-free.
Visit with My Primary
Well, not really my primary physician because I didn’t go to the doctor enough to be considered a regular. Without knowing any good doctors I just made an appointment to go see one at the local clinic because they could get me in right away.
The primary doctor was perplexed. My symptoms were just terrible pain in the right upper quadrant (RUQ), no fever, no nausea (that came later)…no nothing. The next course of action was what I call the “pincushion” phase where practically every blood test was ordered, none of which showed anything. Next was the ultrasound to see if I had gallstones, which again showed nothing. Then MRI radiogram because the doctor was concerned there may be an aneurysm but you guessed it, nothing once again.
With nothing showing up and my primary stumped he suggested I have a HIDA scan done to determine if my gallbladder was functioning. Bingo! Turns out my gallbladder was completely non-functioning. My doctor tells me this has to be the problem but the bad news is I need my gallbladder out. At this point, I told the doctor they could take out whatever the hell they wanted so long as I felt better.
It’s not clear why but people with Celiac Disease tend to also have non-functioning gallbladders that don’t empty or contract as normal. I’m no doctor so please see one before doing what I suggest here. With the disclaimer out of the way, I strongly suggest you get tested for Celiac Disease if your doctor says you have a gallbladder problem. Both gallstones and simply non-functional gallbladders in absence of stones are very prevalent in Celiacs. Almost every person I’ve met with Celiac Disease says they don’t have a gallbladder.
The GI Specialist
Having my gallbladder removed was supposed to fix the problem, but it didn’t. After the initial pain from the surgery subsided I began having symptoms again, the same ones as before the surgery. So I went back to my surgeon for my follow-up and explained my issues and he said that the only course was to see a Gastrointestinal Specialist. The surgeon is the real hero here, he knew when to refer me. Perhaps my primary should have done that to start with and saved me from surgery.
I go to the specialist and he’s not entirely sure what’s going on either in the first visit. With no definite leads, he ordered every test under the sun. Luckily one of the panels he ordered was a Celiac Panel. The panel included TTG IgA & IgG, IgA EMA, DGP IgA & IgG, and finally Total IgA.
My TTG came up as a “weak” positive which may lead to some doctors saying that you don’t have Celiac. However, TTG is a very sensitive test, 98% of people that are positive (no matter how strong) have Celiac Disease. I was positive for DGP antibodies. I also was positive on the EMA antibodies which is100% specific for Celiac, if you are positive for EMA you have Celiac. So my problem was solved!
Before the specialist would officially diagnose me with Celiac he required that I have an EGD done. An EGD is an Esophagogastroduodenoscopy which means they put a tube down your throat, into your stomach, and into your small intestine. While they are in there they visually inspect your upper GI tract and then take a sample from your intestine. The reason for the sample is that a pathologist can look at the piece of tissue and positively diagnose Celiac Disease (CD). A pathologist can see the damage being done to your intestines that is specific to Celiac Disease.
Well, my EGD came back as a Marsh Grade 3b. Marsh grades tell you how much damage your mucosa is in your intestines. Normal mucosa looks like little hairs sticking up, but when you have CD they get flattened out, sometimes completely. Marsh 3b is the second most damage that can be done, so that explained a lot! I was deficient in vitamins and minerals and slightly anemic as a result of my intestines being damaged and not absorbing nutrients correctly.
I will go into greater detail later on how I live gluten-free but now I had my diagnosis. People always ask me how I do it, how can I just give up gluten? Well, for me it was simple. I felt terrible, I have Celiac Disease, the easiest way to feel better was to not eat gluten. Not having a choice made it easy for me. I have been gluten-free going on five years now and never felt better! All of my symptoms are gone.