We have to advocate for ourselves

Why do so many people have to suffer with illnesses for so long in order to find out what is wrong with them? Precious time is wasted because they can't get a clear answer. And they get the run around instead of the help they desperately desire. 

I'm not complaining about our Doctors nor their staff because I get that they are so overwhelmed some days that they don't have time to think or figure things out so their quick remedy to get you on your way is to prescribe a medication or to tell you to eliminate this or that. Or the biggest answer is Stress! Or my favorite, lose weight. Yes, stress can make a lot of conditions worse. But stress is not the main culprit at times. Along with weight. Yes, weight can play many factors in our health. But the underlying culprit needs to be figured out. The root cause needs to be determined to help us get back to a healthier version of ourselves. 

Why can't we bring more awareness to the fact that a lot of people that have to wait months or years to get an answer to what is going on with them, end up having some type of autoimmune disease. 

There are many autoimmune diseases. Too many to list here. But there are a lot of online resources to educate people on them. And it's a known fact that when you get one autoimmune disease your chances of getting another one or several increases. And usually most people with one end up with others. Also our genes we inherited from our parents can be mutated which causes a lot of these autoimmune diseases. 

An autoimmune disease can not be cured. Everyone who ends up with one or more carry the mutated gene for it. And that doesn't always mean that they will absolutely get that particular disease but that their chances at getting it are greater. And most autoimmune disease can be triggered at any age. Autoimmune diseases are not something we develop due only to how we eat, our environment or other factors. But certain things like stress, illnesses, childbirth, trauma can be triggers to the gene which sends our immune system into overdrive, causing our immune system to attack healthy cells and try to attack them because they think they are invaders therefore triggering an autoimmune disease which will be with you the rest of your life. So, I guess you can say we were born that way. 

If you are reading this and have had problems with your health that your Doctor has not been able to pinpoint or your Doctor hasn't really tried to be of any help for, I challenge you to research about autoimmune diseases and if you suspect you may have any of them and you have not been tested for anything yet, to check in about having that done. 

23andme and Ancestry both have health testing with their DNA kits. They can look at your genes and determine which one you carry that puts you at risk for these diseases or even cancer and other health issues. If you prefer not to have your DNA sample out there you can always have your provider test you or give you a referral to someone who can. The DNA + health testing may end up being cheaper in the long run for testing results. But they do not diagnose you with anything but only give you insight on what genes you carry that may cause issues later if not already. 

And if your blood work comes back normal, don't stop there. If you carry the gene for a certain risk factor, you still need to be diligent in watching for signs of any diseases that may later develop or take precautions to heed these disease off. 

I only wish I had known about 10 to 15 years ago what I know now. And that is if only I had known more about autoimmune disease. Before I was diagnosed with Celiac I can say I had heard the word autoimmune disease before but I probably couldn't have told you much about them or the different types. But after being diagnosed with Celiac and also finding out that I had NAFLD (Non alcoholic fatty liver disease) at the same time, I haven't quit researching since then. 

I don't really know when my Celiac actually started but I would say I had symptoms of it several years prior. But anytime I went to the Dr I would never say anything because I just figured maybe my symptoms would eventually go away. Or I kept blaming everything on getting older.

The only symptom I recall saying anything about because it bothered me that bad was the fact of having bad heartburn that never stayed away and would only ease up with medication. I suffered with this symptom for a long time before I ever said anything to the Doctor and ill never forget his response which honestly floored me and that was, if you lose some weight, it will improve. Hmmm....funny how at that time I would say I was about 20 pounds overweight and even when I was at a healthy weight I still suffered with it. But I didn't waste my time trying to explain that to him. But that conversation stuck with me and always will. 

So as time went on before my diagnosis I had gained weight and ended up at my heaviest weight right before my Celiac diagnosis. The Dr who told me my heartburn would go away if I lost weight, relocated and it was time to find a new Dr. It took awhile. I would say a year or more to find a Dr who actually listened and referred me to the right specialist but when I mentioned the same thing about heartburn and also other symptoms that I had been having in addition that were not going away, he sent me to a gastroenterologist. That's when I was tested for Celiac and they discovered that I carried the gene for it and they wanted to do more testing. So I went in for a endoscopy. My NP who provided my care and testing during that time said that the biopsy results looked normal but from her knowledge it looked like from the images she showed me, that she saw signs of Celiac starting. So I may have been in the early stages of it before it destroyed my villa. These are located in the small intestines and anyone with the gene can't digest gluten and overtime can develop into Celiac itself. 

And from all of the issues I have had since then and still having I am truly convinced that I definitely was starting with it and caught it early but not early enough. I wish I had found a provider sooner who would take the time to send me in the right direction instead of just prescribing medicine and telling me to follow up in 3 or 6 months. 

As I said the list goes on with issues that Celiac can cause. Out of the autoimmune disease they say it's the best one to end up with because you can help heal yourself just by eliminating gluten from your diet. But with all of the issues I've had with other health problems that it help cause then I'd say it's no better than any of the others. The only bonus is there is no medication for it or that you have to be on for the rest of your life but again the other issues it's caused is a different story. 

I have suffered with pheripial neuropathy in my feet mainly. Gallbladder issues, fatty liver disease (non alcoholic), plus many other issues that I've experienced and now the latest one which is another auto immune disease that i probably had before the celiac was diagnosed but I was misdiagnosed and yes by the same old provider I had who said to lose weight. But at least he was a little more broad on his diagnosis for me than one of his fellow doctors who wanted to blame everything on allergies all of the time. 

I was put on medication for type 2 by this Dr which it helped somewhat then eventually stopped helping. Which is typical for T1 in adults. 

So let's talk a little about my newest diagnosis which is type 1 diabetes which is an auto immune disease as well. Unlike type 2. Type 1 typically begins in childhood but can actually develop later in life as well. Remember I said autoimmune diseases can develop at any age. Type 1 is not caused by someone eating too much sugar when they were younger (or older) it develops because, well it's an autoimmune disease of course and like I said autoimmune diseases like to hook up with each other. And especially Celiac and type 1. Another one is rheumatoid arthritis which is one of a few autoimmune arthritis'. I could have that as well but haven't tested. I have noticed a difference most days after going gluten free in joint stiffness and swelling. 

With T1 developing later in life it's considered LADA which stands for Latent Autoimmune Diabetes in Adults. And develops slowly unlike T1 in children which tends to develop rapidly. So with my symptoms I experienced with that which lead to a diagnosis, I suspected I could have it over a year ago. And with the genes I carry, they carry a higher chance at developing celiac, T1, and Rheumatoid arthritis. I will have to be on insulin for the rest of my life with that because my pancreas will eventually stop making insulin if it hasn't already. 

But with my new diagnosis I now feel confident that I can control it better knowing more facts about it and having more knowledge of what it's all about. And I've learned a lot from both disease. Along with my other diagnosis in-between these two of Meniere's Disease some days I feel like I'm falling apart. But knowing what's causing my health issues and me feeling the way I do, I can hopefully learn to listen to any cues and take care of myself better. 

Sometimes we just have to advocate for ourselves. Because only we know how we feel and if we feel like something is not right. It's no need to wait on someone else to help us when we have to just help ourselves. 

If you made it this far and would like to chat about any concerns you have then feel free to send me a message. 

Thank you for following my blog! 

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