I am currently in the mode of writing an article to hash over the steps it took to diagnose my daughter with FM and my son with CD. Going over these memories and then reading statistical data online, I am flabbergasted as to how Celiac can be so underdiagnosed. Not to mention how unaware our medical teams in the US are unknowledgeable about FM.
According to U of Chicago's Celiac Center, it was determined that 3 million Americans have Celiac. Of those 3 million people, only THREE percent of those are diagnosed. This is 3 million people that SHOW symptoms of some sort of Celiac. Three million. That means 97 percent have no clue and can you imagine the damage that is being caused to their bodies because of this lack of information? three million. I believe, if I remember right, there are approximately 2 million folks that have dementia, and 2.7 million folks have rheumatoid arthritis. Or, how about the information of all those 3 million folks could take up the entire state of Nevada. All of this information is available at the website of U of Chicago if you want to read more.
Then, I am reading more and more on Sugar's diet because that diet just makes me shudder. I hate it and need to move past that feeling and deal with it and trust me, I am attempting to do so. I need to get out of my wallowing of how crappy this diet is. But, back to the reading online. I am noticing more and more that folks are leaning towards FM being related to CD in some way. Granted Sugar's endo biopsy came back negative, she has rashes on her arms, neck, face and back that are NOT healing. She is on two antihistamines (need to check those ingredients) and four or five different meds/creams to try and combat the rash. Not realizing how wheat could have such a huge impact on FMers sensitivity levels. Amazing. I was contemplating putting her on a strict CD diet, but I think this has given me the answer to do so. There is more information i am gaining as I do more and more research and browse folk's personal blogs.
But in reality, findng information to help FMers out is seriously lacking. If you feel overwhelmed and clueless and you have been into this diet a short time or a long time, you are not alone! I think everyone I have run across has a feeling of confusion that hasn't gone away. There are a few support groups out there that indicate this to be the case. It is an area that is not well-known. And to validate this point, we go to a very good children's medical facility that I just love their GI department. I love my children's doctor and have referred several folks there that have gotten phenomenal care too. I saw the dietician for CD and for FM. Vasts amounts of knowledge and information on CD. A lot. For FM, maybe two or three sheets and her saying that she just doesn't have a lot of information and most info I might be able to find is online. There is nothing significant I have come across other than the nutritional guide I have linked to the right.
I am hoping as I gain more knowledge I can share it here. Please post too if you have more information out there. I would love to get more and more information for our family and yours!