Live and Learn

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!


Anonymous said...

I am 30 years old. My mother's side of the family carries the genetic predisposition for Celiac Disease. There are at least 10 among the living 100 or so of them who have been diagnosed with CD, including my mother and one of my brothers. Three blood tests and a biopsy over the course of a decade still show me negative for CD. No diagnosis was found for why I kept getting so sick. My problems all began a few weeks after I took Azithromycin, an oral antibiotic, for an ear infection, which I've always regretted. I found out on my own from reading about my symptoms online that the low FODMAP diet might help me, and thankfully at my wit's end I was right. For your daughter, I would recommend a comprehensive multi-vitamin, especially ZINC for her skin issues. I was prescribed a corticosteroid for a rash on my neck in cream form that just did not work... A year later, I tried an over the counter hydrocortisone 1% in a petrolatum ointment form which has worked much better, but the rash comes back anytime that I eat way too much sugar (100+ grams each day for a few days, when I'm stressed). It could be a sign of a Candida overgrowth because they love sugar and can drive cravings for it! As for fructose, I'm incredibly sensitive. Brown rice, tomatoes, garlic, onions, lentils/beans, juice, are especially problematic in any amount. I was already on the gluten-free diet before trying the low FODMAP diet, so that helped a lot. Finding out that the fructans (long chains of fructose molecules) which are in wheat were the cause of my problems helped me understand why the gluten-free diet had worked- no wheat, no fructans! Speaking of vitamins again, my immune system had become so weak before I began taking them that my lips chapped easily, I had problems falling asleep and staying asleep, depression, tingling of my nerves, anxiety, migraines... All of these problems have been reversed, so long as I continue to take supplements daily in the right doses! I wish you the best of fortune for you and your children. I know how frustrating it can be. I can't even eat ketchup or BBQ sauce anymore and even fast food places put corn syrup in nearly everything. I don't miss the soda at all. When I have a sweet tooth I eat SweeTarts or Shockers (WONKA candies) because they have dextrose as the first ingredient, but stay away from Chewy SweeTarts. I'm proud of you for not giving up on your family! *hugs* I don't trust antibiotics at all, because they started all of my problems. Re-establishing the gut flora of the digestive tract takes some serious dedication and no adult can really get it all back to the levels we were forming when we were infants drinking breast milk. It's hard work to get things back to normal, for anyone, especially for children! Take comfort, as you are not alone.

Anonymous said...

I should also add, I was having very bad sinus issues to the point I would wake up every day feeling like I was getting sick with a cold- congestion, sinusitis (post nasal drip), would have sudden sneezing fits without any explanation (I don't have nasal allergies of any kind), even ear eczema. Going completely off of dairy to avoid lactose resolved those problems for me. If your kids are okay with Casein then hard cheeses are still okay, but if they are sensitive to Casein that's another reason to cut out dairy completely. I've also had to remove soy from my diet because it would trigger a painless migraine (with scintillating scotoma visual aura) followed by a painful migraine- if your kids don't have that problem I would say at least you've got that going for ya! =) Though there is a cheese that is dairy-free and soy-free and gluten-free, made from arrowroot flour.

Oh and before I forget anything again, here is a website that my cousin and a friend have made with GF cooking recipes that you might find useful! www.eatingglutenfree.com

Enjoy! =)

macocha said...

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