After a brief hiatus, I'm back and ready to get back into the swing of things full force! Recently I've seen several posts from people who are angry and frustrated with what they call incompetent doctors who misdiagnose or failed to diagnose for too long a period of time before they finally got a correct diagnosis of Celiac Disease. It does on average take anywhere up to 10 years sometimes to get a correct Celiac diagnosis because this is simply not the first thing doctors necessarily consider. While I fully understand their frustrations, I prefer to take a more practical and logical view of this.
One, I am not an angry or negative person by nature. I tend to find the positive in even the dimmest, darkest situation. I think becoming angry about supposed doctor incompetence is counterproductive. Please remember that there are over 300 hundred possible known symptoms of Celiac Disease, many of which, mimic other health disorders. For a fairly comprehensive list of the known Celiac symptoms click here.
Over my life I have presented with 73 varying, chronic symptoms, many of which could also be attributed to my hypothyroidism. Symptoms for Celiac Disease range anywhere from IBS type symptoms, severe bloating, skin issues, brittle nails, dental problems, brain fog, anxiety, insomnia, paranoia, achy, swollen joints, other health disorders and autoimmune diseases, and in extreme cases anaphylaxis. If taken separately, each of my 73 symptoms could potentially lead to 73 very different diagnoses. In fact, it took my doctor 3 years to finally test me for Celiac Disease. It wasn't because he was incompetent. On the contrary. He was searching for answers to my most pressing symptoms, which appeared to be allergies of some kind. It wasn't until I nearly died from a severe anaphylactic attack that he reviewed my entire medical history and put all of my symptoms together to consider to test me for Celiac Disease. He worked so hard with various tests and treatments to try to find the right answer. We were both looking at only the most recent and severest symptoms instead of the whole picture. Which is logical that a doctor would do that!
Over my life I have presented with 73 varying, chronic symptoms, many of which could also be attributed to my hypothyroidism. Symptoms for Celiac Disease range anywhere from IBS type symptoms, severe bloating, skin issues, brittle nails, dental problems, brain fog, anxiety, insomnia, paranoia, achy, swollen joints, other health disorders and autoimmune diseases, and in extreme cases anaphylaxis. If taken separately, each of my 73 symptoms could potentially lead to 73 very different diagnoses. In fact, it took my doctor 3 years to finally test me for Celiac Disease. It wasn't because he was incompetent. On the contrary. He was searching for answers to my most pressing symptoms, which appeared to be allergies of some kind. It wasn't until I nearly died from a severe anaphylactic attack that he reviewed my entire medical history and put all of my symptoms together to consider to test me for Celiac Disease. He worked so hard with various tests and treatments to try to find the right answer. We were both looking at only the most recent and severest symptoms instead of the whole picture. Which is logical that a doctor would do that!
There is no medical treatment or cure for Celiac Disease. Unless a doctor is a specialist in this area, Celiac Disease is not going to be the first diagnosis on his or her mind. Again, with such a huge variety of symptoms, many of which have absolutely nothing to do with the gut, it is no wonder that so many people are misdiagnosed, often multiple times, before finally getting the correct diagnosis. The key isn't to get angry, but to educate! My doctor doesn't know a lot about Celiac Disease. He can't treat me medically for it, so he has actually learned a bit more about it from me through the past few years. I love that he asks me questions about it and that he listens to what I have to say. He is a general practitioner, not a specialist in Celiac Disease. And, he is a very good doctor, whom I still see for my overall health and wellbeing.
Yes, it is very frustrating how long it takes to get a correct diagnosis - if you ever do! Believe me, I was extremely frustrated, too! I've never blamed my doctor, though or believed he wasn't doing all he could to find an answer. The more we can educate people and raise awareness of Celiac Disease, what it is, what the symptoms are and what it truly means to live gluten free, hopefully, the better doctors will get at recognizing and diagnosing Celiac Disease more quickly. Admittedly, I was frustrated several months after my diagnosis via blood tests and going gluten free to learn that I should have had a confirming endoscopy. This is where gently educating our medical professionals comes in handy. My doctor didn't know that I should have had an endoscopy. He knew which blood tests to order for diagnosis that way, but when I asked if there were any other tests that I needed, he told me no. This disease is simply one that most doctors have little to no experience with. If your doctor is open to it, sit with him or her and discuss your disease with them. Let them know about it, what it is like to live with it, what it means to be gluten free. I feel fortunate that my doctor is truly interested in what I have to say about it. He knows I've done my research. He knows I want to do whatever I can to get healthy. And he knows it is important for him to know more about it. Maybe, because of my history and diagnosis, he may recognize symptoms in someone else and be able to diagnose them sooner.
This is one of the biggest reasons I began this blog, am co-leader of my local Celiac and Gluten Free support group and recently built a new website - to help educate and raise awareness. What can you do to help raise awareness for Celiac Disease in a positive and proactive manner?
For more resources visit:
https://www.beyondceliac.org/
https://celiac.org/
https://westerniowaceliacandglutenfreeliving.com/
This is one of the biggest reasons I began this blog, am co-leader of my local Celiac and Gluten Free support group and recently built a new website - to help educate and raise awareness. What can you do to help raise awareness for Celiac Disease in a positive and proactive manner?
For more resources visit:
https://www.beyondceliac.org/
https://celiac.org/
https://westerniowaceliacandglutenfreeliving.com/
