Today is National Celiac Disease Awareness Day.
All of us who suffer from celiac disease before getting diagnosed may not have even been aware that there was a day dedicated to this.
According to the Celiac Sprue Association Sept. 13th was chosen for this day because it is the birth date of Dr. Samuel Gee, M.D. a physician and pediatrician. Dr. Gee is the first physician that is credited with being the first to identify the link between celiac disease and diet. One of his famous quotes is: "If the patient can be cured at all, it must be by means of diet."
So i guess we can be very thankful to Dr. Gee because if it weren't for that important link between celiac and diet more of us would be way sicker then we are.
Of course those of us who suffer from this disease know that it is way more complex then it sounds. We also know that doctors themselves can't even tell us everything about celiac because of their lack of education when it comes to this disease. The education given to these doctors in medical school is to suspect celiac disease in a child suffering from diarrhea, abdominal pain and bloating. As we know it's much more complicated than this.
Like me, so many of us are getting this disease in our adult years. Many deal with constipation, itchy rashes, hair loss, bloating etc. Or many might have just one complaint being neuropathy, tingling in their hands and feet. It becomes way more complicated and it masks itself as other disorders. Unfortunately many of us do develop other disorders as well. Then there are those that have no symptoms at all.
Dr. Green the director of the Celiac Disease Center at Columbia University in NYC was asked in an interview why it is so hard to get doctors to realize that celiac disease could be the culprit for making patients so sick and this is how he responded:
<DGF: Why is it still difficult to get doctors in the U.S. to consider that celiac disease could be the culprit making patients sick—especially the ones with IBS symptomsthat don’t resolve with IBS treatments?
Dr. Green: There are a couple of reasons, actually. Most doctors here are not prominently taught about celiac disease in medical school or in post-graduate education. The latter is often funded by big pharmaceutical companies, and none of them presently offer a medication to treat celiac disease. We really can’t blame the doctors totally because most of them are not going to look for something in their patients that they were taught is extremely rare. Of course, celiac disease is not rare at all, but many doctors still think that it is.>
I got this information from the www.delightglutenfree.com website. Read the entire article here. It is very informative.
I have to give my experience with a doctor very briefly:
After i had been diagnosed and had seen the doctors at Jefferson University Hospital at the Celiac Center in Pennsylvania i was trying to get help for my brother who lives a few states away in Ohio. He was in his doctors office at the time and was asking him to test him for this disease. My brother couldn't remember the names of the tests so he called me while he was with his doctor and put me on the phone to give him the names of the tests that the doctors at Jefferson had done on me.
The doctor was not polite at all. He kept insisting that my brother did not have celiac because he didn't have diarrhea. I explained to him that i didn't either in fact i suffered from constipation. I tried to ask him if he would at least test him to see if he carried the gene for this disease. He said there was no such test. Although i explained that they had just finished these tests on me and found that i carry the gene and i gave him the name of the test he still protested. Now i'm not a doctor and i understand that many of them have very big egos but i wasn't trying to belittle him in any way i was just trying to help my brother get the proper help he needed. Unfortunately there are many doctors out there with this same attitude and if this is the case for you i encourage you, just as i did for my brother, to find a new doctor. Keep looking until you find one that listens!
What can we do to help educate people? Well there are several things we can do and they don't take a lot of effort.
It's important to start with our own family and make sure that they have all been tested for this disease. We can share interesting articles on celiac disease with family and friends through email or social networks. We can email local grocery stores in our area and request that they get more trusted gluten free items in their stores. Talk to your doctor openly about what you have learned and print out specific articles you have found helpful or that you may have questions on. Even if you just get the conversation going it is better than them just sending you out the door after diagnosis saying go eat gluten free and see me in a few months.
There is quite a bit of downloadable guides and articles on the www.celiaccentral.org website that you can use for yourself as well as for your childrens schools.
Another way you can do your part is just to educate those around you. Yes more and more people are becoming aware of Celiac Disease and being gluten free but they are still very uneducated about it. You can educate and not bombard people with information with the smallest of phrases such as: "I suffer from an auto-immune disorder it's not an allergy" , "Gluten is a protein that causes damage to my intestines", "I have to be extremely careful to avoid gluten because this disease can lead to developing cancer down the road."
You don't necessarilly have to give an entire speech but just saying a short phrase that shows the seriousness of the disease will help people to see that this isn't a fad for you and it will give them some much needed information that will leave them thinking. Who knows maybe they will even go home and do some of their own research, that is what has happened to me at times.
Well i hope that this article was enlightening and gave you some encouragement to go out in the world and educate others or even in the very least i hope i encouraged you to educate yourself some more on this disease. I have found that there is much to learn.
Please tweet this article to others so that we can raise more awareness on this complex disease. Thank you!
Stay Healthy!!
References: celiac sprue association website
celiaccentral.org
delightglutenfree.com
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