Monday, August 23, 2010

Celiac Disease linked to Neurological Illnesses

A friend of mine, whose husband is a Chiropractor in CA, read my blog and told me that her husband had just returned from a conference that emphasized Celiac Disease being linked to Neurological Problems.  I'd like to copy a little bit of what she told me - so I can share this with you...

"Ryan just got back from a chiropractic neurology seminar. Its main emphasis was on celiac and how bad of a nerve disease it is. Ryan came home motivated to go gluten free... Anyway---just from the little Ryan told me about (the seminar) ---you sound like a typical case of major nerve damage caused by gluten".

My friend is right.  Celiac Disease is linked to many neurological diseases like Schizophrenia, Multiple Sclerosis and if mothers have Celiac and continue eating a highly processed food diet, Down Syndrome is the result - it's proven scientifically.

For more information on the Diseases Associated please read the book "Celiac Disease A Hidden Epidemic" by Peter H.R. Green, M.D (Director of the Celiac Disease Center at Columbia University)

The book is AMAZING and explains a lot of the various symptoms experience with Celiac Disease.  My blog is to get MY STORY out there...in hopes that it will help someone.  Before I found the answer myself by finding out about someone with Celiac who had my SAME symptoms I put myself on a gluten-free diet and got well.   There were two people before this time who told me I had symptoms of "A Wheat Allergy".  At the time, and because a "Wheat Allergy"  seemed so ridiculous to me - and the people who had the wheat allergy didn't have my same exact symptoms I didn't listen - or I wasn't humble enough...or perhaps I wasn't ready to be well...perhaps I didn't want it bad enough. 

Anyway....the below examples are some of "My Symptoms"....I hope it helps someone.
I wanted to tell you a little bit about the "Mom" that my kids experience when I've had Gluten.  I feel like I have several different personalities due to the different levels of gluten I've "accidentally" taken.

Mom Example #1 (The Vagabond Mom).  Prolonged exposure to gluten....can't find the cause...

This type of Mom barely has enough strength to get herself out of bed, to get kids off to school and food eaten - she doesn't put on makeup and puts her hair in a pony tail....she moves slowly...thinks slowly....can't worry about all the kid disasters happening around her...if she lies down then it's possible it would take most of the day to get enough strength to get back up.  She's too weak to prepare very healthy meals and eats whatever is quick and convenient...the kids run around with dirty faces, in their pajamas and have complete freedom of the house.

Example:  A friend of mine, who has now moved to Colorado, grew up with a Mom very similar to the above case example.  The mother has now decided to be a Vagabond.  She lives alone wherever she can - and is sleeping away her life.  The friend of mine, being the oldest in her family, had to take the "Mom" role and cared for her 5 younger siblings, cleaned, cooked, helped with homework etc. 

My Example:  Gluten DOES effect the MIND.  When I'm sick like the above first "Mom Example" it is Hell in my home and in my Mind.  My mind goes crazy with thoughts like "My family would be better without me"....I try to think of ways to take care of my kids - without me being there.  I have thoughts that "my husband would be better off and happier with someone else".  I'm extremely lonely when he's out of town I struggle with depression.  NOT BECAUSE I HAVE DEPRESSION- that needs medication, but because I got Gluten on accident.  A couple days after being off of gluten is like the feeling of re-birth of body and mind - just as spring comes after winter.  When I have my "Mind Back" I look back on the experience and am baffled by how the gluten effected my ability to see clearly.  It's as if I was swimming in a beautiful crystal clear water (like the waters in Cancun) and suddenly the water turns a dark grey, I'm far from shore and I can't see my hands in front of me and have to prayerfully try to get to shore as the fears of danger, sharks, dangerous snakes swim about in my mind.  It is a huge relief for my family to get "Mom Back".  I spend the next few days not only recovering physically, but mentally.  My paternal Grandmother was diagnosed a couple years ago with Celiac.  She has the typical, easily identifiable symptoms of weight loss and diarrhea, but she says that the hardest part of the recovery is getting her mind back.  I totally agree....it's like I've been through a very traumatic experience of danger, death and illness and am trying to deal with ordinary life after going through such pain and anxiety.

Before I give the next example I want to make a point very clear that was explained to me over and over when I attended the support group in SLC.  YOUR SYMPTOMS AND SENSITIVITY CHANGE OVER TIME.  I'll explain later about becoming sensitive to breathing in gluten....thus the reason for several different "Mom Examples".

Mom Example #2 (Explosive, Angry Mom)

This Mom is the one that scares me to death and is actually the one that comes out currently when I've been exposed to gluten.  I can use this morning as an example.  My kids were playing and making messes and everything was fine.  Shane was making everyone his "Sponge Bob Square Pants Breakfast" which is basically where a circular whole is cut in the bread and he cooks the egg in the circle of the bread.  He joked with the kids that the egg is the color of Sponge Bob and the toast are his "Square Pants".  (Not very funny - as most of his jokes...but you have to know Shane to appreciate his dry humor).  We all gave him a charity laugh.  So I asked Shane to make me an egg as well.  When he hands it to me I ask if he used a separate pan.  He said that he cleaned off the pan really well.  Needless to say I start feeling the energy flow out of me about 15 minutes later...just as a balloon with a slow leak begins to deflate I could feel my energy quickly leaving me and I began to feel irritable and angry.  I thought of sending Shane an email full of swear words letting him know about his negligence and insensitivity, but I "breathed through the anger".  I know other Mom's have had experiences where they've felt so much anger that they've had to lock themselves in their rooms to save their kids from themselves.  I've felt that anger and with the anger, or the crazy feelings of depression I have one thing to say.....

BE STILL AND KNOW THAT THERE IS A GOD TO TURN TO FOR HELP.  BREATHE in and out slowly AND PRAY.  I am so grateful that my parents were never abusive.  I can thank my Dad for the yelling and swearing skills, but just as my dad used his two favorite H and D words I knew that he still loved me and I could help him joke through the anger.  I've explained this to my kids how my siblings and I would try to get Dad to laugh when he was angry and have told them to tell me my Dad's name when I get upset so I can remember and stop being so mad.  They are cute and it makes me want to cry, more than laugh, when they use the sacred name of my Father who is no longer on this earth as it is a painful reminder as to how he died.  He was an undiagnosed Celiac.  I wish he had held on a little longer until I could have got him on a Gluten-Free Diet - a gluten-free diet that was NATURALLY gluten free - not the highly processed imitations of real food.

Mom #3 (Mom with Dementia)

I was at a Mission Reunion several years ago when I was asked to introduce my family.  I remember the horror I felt as I stood there in the doorway with my 3 little kids...unable to remember their names and ages.  A flood of embarrassment swept through me when I read the faces of my mission friends who looked deeply concerned.  I wanted to run away and cry.  I knew that I was feeling weak before going to the reunion.  I was late arriving and struggled in with the kids and was trembling as I stood in the door way.  At this time I hadn't experienced going paralyzed or hadn't lost my vision, but a couple of years later I was able to recall this event at another mission reunion and explain my change in diet and how my life had been extremely blessed by the change as I referred back to the time they remembered when I couldn't introduce my own kids to the present moment as I stood before them a little teary eyed, but confident in my ability to speak in front of the group.

In my profession I work a lot with numbers, reports, balance sheets, profit and loss reports etc. and help supervise many individuals and they come to me for advice.  If I've been sick with gluten it takes me a couple of days to get my mind back completely.  The first day after being sick it's really difficult to compute numbers.  I would much rather grab a broom and clean.  I'd rather be given a toilet scrubber and wash down the bathroom walls and floors than try to think up numbers.  This is why I usually spend the first day back on my feet running errands or cleaning or organizing.

A friend of mine at BYU was getting his Masters in Electrical Engineering.  He was a self-diagnosed Celiac.  He told me that before he put himself on a gluten-free diet that it he would have to take several extra hours than most people to complete his projects every single day.  He would study for a couple of hours....take breaks often...and then study over and over again.  I ran into him several years later at a health foods store.  He looked so healthy and he seemed much more confident in conversation.  As he was talking to me I couldn't help but get lost in my thoughts while I marveled at how healthy he looked, and how articulate he was in conversation.  He explained his diet currently and it was very similar to the changes I had made with my own diet.  People who eat a gluten-free diet that is still highly processed have a somewhat "pasty look in their face".  I hate my wedding pictures and the pictures I have of Deseret Dance Theatre because my face looks so bloated, dis-colored and pasty.  Another friend from BYU recently got in contact with me and when we went out to dinner together she commented that my face looked very different.  She said "not to be rude....but your face use to look out of proportion with your body.  She said "you were always so thin, but your face looked a little puffy"...."now you can see your cheek bones and you look so great".  My sister-in-law stopped eating processed foods and she too  has the "healthy glow".  She gets comments all the time about how healthy she looks.  Food DOES make a difference.  Lots of healthy fruits....lots of vegetables....lots of pure clean water....a little meat used very sparingly....dairy used sparingly...plenty of nuts, seeds, and beans.  The closer you can get to eating raw food - the more healthy you will look.

There are other "Mom Examples" that I don't have time to go into now.  Mom's that are "always sick with something" (from a compromised immune system).  Mom's who have fertility problems....Mom's with Thyroid problems....

I'll end with an excerpt from the book "Celiac Disease A Hidden Epidemic", by Peter H.R. Green, M.D. and Rory Jones  (Peter is the Director of the celiac Disease Center at Columbia University)

Note: I let someone borrow my book, listed above, before I finished writing this blog entry.  This entry has been in "storage" waiting to be posted once I was able to get the quote I needed from the book.  The individual has not returned the book yet. I need to probably purchase another book, but for now, I will post this blog entry and insert the quote once I get the book back.  I'll just recap the Dr. by saying...

Celiac Disease IS a hidden epidemic.  The symptoms are so varied that it is very difficult for a Dr. to properly diagnose you with Celiac Disease.

When in doubt...try the gluten-free diet and make it Naturally Gluten-Free.

Lots of love!

-Steffanie

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