Maybe you didn't know it, but May is Celiac Disease Awareness Month!
I know, I know, it seems like literally every day of the year has some kind of declaration attached to it, but this month's title actually means something to me because celiac disease is now a big part of my life.
I was just diagnosed with celiac disease this last week, and suspect that I've had it for
much longer, at least since a teenager. Despite seeing multiple specialists when I was a
teenager, no one could figure out what was wrong with me, and some even suggested that there was nothing wrong. Providers would take care of my symptoms but never care to find out what the real root of the cause was. As a teenager I started with stomach issues,
extreme fatigue, and in my 20s and 30s had multiple miscarriages with a thyroid that was on the verge of not working properly.
Within the last year I started to feel extremely bad and almost to the point of feeling like I didn't have many years left to live. That is just how bad I felt, and I am one to push myself to the point of no return and can deal with pain until it starts to affect me on a daily basis and my whole life. The main symptoms were extreme fatigue, even when I just slept 8 to 12 hours. The symptoms where muscle, bone and joint pain so bad that I could do nothing but take tynenol arthritis. I also would have Gerd and upper stomach pain as well as excessive bloating and lots of fluid retention. I started to do my own research and the only thing I could come up with was some symptoms of some other diseases. I was to the point of giving up and just stay in bed forever with whatever was wrong with me.
Well, I ended up in the Emergency room with what I knew to be kidney stone pain as I have experienced that same pain before. The Dr. came to ask me how I felt, and I quoted, "besides. the kidney stone pain, like I was withering away." I explained all my symptoms and she also said I had Pericardial Effusion, which is fluid around the heart. She told me she was about to do lots of testing to find the root cause because she is a doctor who specializes in finding what the issue is and not treating just the symptoms. If you could have seen the smile on my face and I finally felt a bit of hope. She asked me if I had an autoimmune disorder which could be the cause of fluid around my heart based on my symptoms. I informed her I have never been diagnosed with any. As each test came back one after another, I was losing hope but then again, I had it on my list to visit this doctor once I was discharged from the emergency room. Twelve hours later I was finally discharged and told to
follow up with multiple specialists, one being cardiologist, another being endocrinologist, my primary doctor and further testing to explain the reasoning behind my symptoms. Test were coming back one by one for the next seven days and they were all mostly within normal. range. I still knew something was not right and I was still holding out hope to find out. Six days past and I had an appointment with my endocrinologist, we went over everything possible and she informed me she would be doing a few more test to see if I had an auto immune disorder, one to check my A1c glucose levels again for the third time in three weeks to make sure it was correct and negative and two different tests for celiac disease.
One test to see if I had celiac and the other to see if I carried the gene for it.
My doctor informed me it would take about five days to receive my results. I waited patiently day after day but really didn't think I had celiac and the reason being was I only had some of the symptoms but not all, but the symptoms where consistent with what I had. Here I am thinking you must have all the symptoms for some odd reason but that wasn't the truth. The truth was the last two test came back, and I was defiantly Celiac.
I had so many mixed emotions, happy that they finally found the root cause of why I felt the way I did and two, knew I could never have gluten again.
It took over twenty years from my first symptom onset to my diagnosis! Since then, I have been in deep thought and in deep in research!
The general public is becoming more and more aware of gluten and the stores offer more and more of gluten free foods. There are so many misunderstandings out there. I just thought I would share my own story in case it helps someone else out there get diagnosed and or realize that they're not alone and there is usually a root cause to your health problem you have.
The Celiac Disease Foundation has a ton of information if you'd like more info but in general, celiac disease is an autoimmune disease, in which the
ingestion of gluten causes a person's immune system to attack his/her own small intestine. It is not an allergy, but more in the category of rheumatoid arthritis or multiple sclerosis type diseases, an autoimmune disease. This affects about 1 in 100 people worldwide and the vast majority of people who have it are undiagnosed. This is usually because many of the symptoms are extremely vague and varies in a lot of different individuals. Symptoms like headaches/migraines, skin rashes, fatigue, joint paint, muscle pain, bone pain, and infertility are often misdiagnosed brushed aside.
Anyone who is diagnosed should care because if you are one to have this disease you will be four times more likely to develop a small intestinal cancer and two times more likely to develop coronary artery disease. If untreated, you're also more likely to develop other autoimmune diseases and neurological diseases. Plus, there's also a genetic component, so your first-degree relatives (parents, siblings, and children) have a much higher risk of having the disease as well.
Within the past three years I was diagnosed with asthma as I would fall short of breath at times, (red blood cells carry oxygen, so if you have lack of red blood cells, then you often tire easily or feel short of breath when doing minimal activity). But I kept pushing day to day. With each week I kept headaches and at times migraine headaches that would take me straight to bed until it subsided. After work and pushing through day to day I would go straight through the door at home and want to go straight to bed. I tried to fight it but there was no feeling any better than to get some rest. The doctors continued to ask me if I was depressed and no, I wasn't, I had been there before, the illness makes you feel like you have zero energy and with that you can understand why some would be depressed, I was just simply beat and with no energy and go on with life whether it be sleeping a lot to function.
Some of my medications I was currently taking were made with gluten and now I completely understand why I felt worse when I took them as I used to tell my husband I felt awful on the meds opposed to not taking them for my thyroid. Now my doctor will be prescribing my meds gluten free as some do contain gluten.
Not eating Gluten or going to some restaurants that do not offer non-gluten foods does not bother me at all, some people wonder about me and why it doesn't, and the real answer is because when I eat gluten it causes a reaction so bad that I feel very ill and with that it doesn't bother me to never eat or want it again.
A simple way to explain it is that if you offered poison in your food, you would not want to eat it and that is exactly what it is to me. I don't want it ever again.
I am now in the process of learning new recipes and eating healthier than before. Now days there are so many options than before, and restaurants offer gluten free meals on menus.
I hope my story has helped someone out there who many feel bad, but just doesn't know what is causing it whether it be celiac or something else that has been undiagnosed. Don't give up but with your symptoms there usually is a root cause for it. Don't believe your crazy, you're not alone. Keep going; keep doing what you can; and never stop searching for answers!
May is Celiac Awareness Month and the time I can start a better life Gluten Free....
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