Celiac Disease Resource Center

http://www.medscape.com/resource/celiac-disease

Way #16: Accepting that Celiac Disease is a Genetically Determined Disease Might Help One Attain Gluten-Free Simplicity

16. Accepting that Celiac Disease is a Genetically Determined Disease Might Help One Attain Gluten-Free Simplicity.

  Many scientists are now reporting with great confidence that “Celiac Disease is Genetically Determined” http://www.csaceliacs.org/library/howsandwhys.php, or that “susceptibility to Celiac Disease is Genetic” http://www.csaceliacs.org/library/genetics.php.  There are numerous other concurring reports as well:

• http://en.wikipedia.org/wiki/Coeliac_disease.
• http://www.medscape.com/viewarticle/568487.

  Now, there are also benefits to this research in that practitioners in the field of Genetic Testing and Counseling are now able to help concerned would-be parents with questions about their future children’s likelihood of developing Celiac Disease due to inheritance of the related Gene coding.  http://celiacdisease.about.com/od/diagnosingceliacdisease/a/DNAtests.htm. http://www.celiac.com/articles/21628/1/Celiac-Disease-Genetics/Page1.html.

  And clearly, there is still a long way to go scientifically: http://www.genetic-future.com/2008/03/new-genes-for-celiac-disease.html.  http://celiacdisease.about.com/b/2008/03/04/breakthrough-in-celiac-disease-genetics.htm. 

  One can go to a blog such as Nancy Lapid’s “Celiac Disease Blog” at  http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-celiac and discuss such things as well as other issues.

  This blog article is also about the idea that if one accepts the Genetic properties of Celiac Disease as valid, then it is possible (if not probable) that somewhere in their ancestry, someone has/had Celiac Disease or at least the Gene Coding for such.  The kicker though is that for many of us, our ancestors were long gone before the word “Gene” or “Celiac Disease” made it into the mainstream U.S. lexicon.  So this can be complex.  It can also be needless.

  But the primary point here is that one no longer needs to feel blame or shame or guilt about having Celiac Disease or having a child with such.  It is hard-wired.  You can’t help it.  Perhaps, in the future, some cases might be prevented through Genetic Counseling, but then that too opens up a whole nest of questions.

  Finally, I am really saying that this sort of information could help bring more simplicity to ones quest for freedom from gluten. 

  With so much emotion-based and morally-based and superstition-based junk out of the way, one no longer needs to speculate about how they got Celiac Disease.  One can instead concentrate on how her or his next meal will be Gluten-Free.  A celebration of sorts.  I hope. 

  Smile, it’s not your fault.

Collecting, Creating and Reading An Informative Library Can Gradually Cultivate Tools for Attaining Gluten-Free Simplicity

15. Collecting, Creating & Reading An Informative Library Can Gradually Cultivate Tools for Attaining Gluten-Free Simplicity.

  If you like to read, this will be easier.

  If you love Internet Surfing… this is really easier.

  If you hate both reading and the Internet, perhaps a well-paid and loyal consultant could assist you.

  The point is, learning and having on-hand information about Celiac Disease and Gluten-Free Living is quite helpful and probably necessary for a number of years after first diagnosis.

  Here are some hopefully helpful ideas:

• On the Digestive NIDDK web-page, there is a listing: “What I need to know about Celiac Disease”.  This is followed by:
  • What is celiac disease?
  • Is celiac disease serious?
  • What are the symptoms of celiac disease?
  • How is celiac disease diagnosed?
  • How is celiac disease treated?

                   http://digestive.niddk.nih.gov/ddiseases/pubs/celiac_ez/index.htm.

  After this is the heading: “Points to Remember” at: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac_ez/index.htm#remember. 

This link is followed by:

• Points to Remember:
  • People with celiac disease can’t eat foods or use items with gluten in them.
  • Celiac disease harms the small intestine.
  • People with untreated celiac disease can’t get needed nutrients.
  • Without treatment, people with celiac disease can develop other health problems.
  • Celiac disease is diagnosed by blood tests and a biopsy of the small intestine.
  • A gluten-free diet must be followed for life.
  • A dietitian can help people choose the right foods.

  Having been a person with Celiac Disease, a Researcher for some time as well as a healthcare Social Worker, I would think that each of the 12 listed items in the two sections above would warrent at least a basic understanding for any person newly diagnosed with Celiac Disease or who otherwise wants or needs to understand the disease.  In other words, this list could be your basic research outline.

  Take any one of the items above and using the Internet or another source (i.e., medical reference text), look it up and read what you find.  Try to determine if it seems like a valid source of information.  If the information is good, then perhaps even make some basic notes or a copy so that you can go back for reference as needed.

  For example, one can go to Google or another search engine and type in: “What is celiac disease”.  The search engine will kick out quite a few hits.  Start at the top of the list, pick the ones that seem to be valid, and read.  

  By “valid”, I mean information that is as correct as possible.  Notice that the webpage sourced above has the initials NIH and NIDDK in it.  These stand for National Institutes of Health and National Institutes of Diebetes and Digestive and Kidney Disorders, respectively.  Both reliable resources.  That is important because this is your health we are talking about… right?

  Learn and keep learning this information.  And try to remember.  Then copy that which you cannot remember.

  Having valid and helpful information on hand until it is learned will likely help you attain a sense of Gluten-Free Simplicity.

14-Carrot Fajita Saute

Please go to my other Gluten-Free Site for the Updated Text of this Recipe.

Revolution Health

http://www.revolutionhealth.com/conditions/digestive/celiac-disease/symptoms/symptoms?section=section_01&s_kwcid=ContentNetwork|979634274

Way #14: Using Good Supports Might Help One Attain Gluten-Free Simplicity

14. Using Good Supports Might Help One Attain Gluten-Free Simplicity.

  Support is a good thing.  There, I said it.  (One disclaimer: As long as it is voluntary and healthy for all parties involved.)

  What do I mean by support?  Primarily, I am talking about the kind of support that we receive, largely from others who give it willingly (and sometimes effortlessly).  Support can be emotional, tangible and even instrumental.  Emotional support is when someone listens while we gripe, then helps us feel that we are OK even if we complain.  Tangible support is like when someone gives or lends us the use or ownership of something physical that we can use as we need.  And instrumental support is like when someone gives us the name of a great doctor to see about our Celiac Disease Symptoms.

  NOW … it is almost certain that some who read this see themselves as persons who NEVER need supports…. like that’s for weak people, right?  OK.. so move on… don’t worry about it.

Don't Be Afraid to Ask for What You Need or Want. (c.2008, WTB)

  As for you others: My sincere encouragement is that you learn how to accept your supports wisely and graciously.  You might also find yourself giving or lending some needed supports in return.  There is nothing wrong with that.

  It is just that part of getting to Gluten-Free Simplicity, is accepting that this is a challenge and that there are going to be difficult times.  Then the question arises: Do I have to do this alone or can I ask for help?  If nothing else, can I at least have someone to share my feelings with as I (hopefully) progress?

  There is no rule that says people who need to be Gluten-Free are required to also be alone.  At least if there is, I ain’t gonna do it.  Nope, wouldn’t be prudent.

  Give it a try?

Expecting it to be Difficult Sometimes Might Help One Attain Gluten-Free Simplicity

13. Expecting it to be Difficult Sometimes Might Help One Attain Gluten-Free Simplicity (at least with less frustration due to unexpected roadblocks and tight curves).

  I remember when I was first diagnosed with Celiac Sprue.  A numbing sense of emotional shock overtook me as my doctor told me and tried to explain what was going on.  If there was any one thing about my own psyche that I could have taken away at that time it would have been my denial.

  Though it could be trite to state it: Denial is NOT just a river in Egypt!

  And there are all kinds of Gluten DENIAL Stories…  for example:

• http://www.cooqiglutenfree.com/sharing.shtm
• http://www.glutenfreeforum.com/index.php?showtopic=50509

  This person on the Gluten Free Betty blog, even posts on behalf of a sister who is allegedly in denial:

• http://glutenfreebetty.blogspot.com/2008/09/sister-in-denial.html

  This particular posting is interesting to me as it was only a few years ago that I tried to gently and logically help my immediate family members understand: (A) What Celiac Disease is; and (B) How they might want to get tested due to its genetic properties.  Oh…. what frustration……  It hurts just to think about it.

  Then there are those genuinely struggling with their own realization of the diagnosis and the disease: http://forums.glutenfree.com/topic4237.html.

  I can relate to all of this in some way.

  And so this is why I suggest that if there is such a thing as Gluten-Free Simplicity, that expecting it to be hard sometimes, and keeping careful feelers out for denial could be a part of it.  For things may seem “simple” whenever I relapse and go for those buttermilk pancakes with maple syrup… but afterwards….. oh…… afterwards……. 

  The denial is gone…. though it may have had to survive a round or two of anger, blame, shame, guilt etc…… but eventually ….

   …… when that denial is gone, and I can confidently expect some difficulties, then I might be better able to avoid such relapses and gradually find myself at least one step closer to “simplicity.”

SmartBrief

http://www.smartbrief.com/dhsb/index2.jsp?campaign=googledhsbad65b&gclid=CPrlpMDeyJYCFQEuxwodwXWvxA.

A briefing service with some special articles related to Celiac Disease.

Crohn’s Disease and Celiac Disease: A Dynamic Duo

  I have had Crohn’s for at least 25 years and Celiac Disease for at least 10.  What a combination!  Researchers have suggested that persons with Crohn’s Disease should also be Gluten-Free.

  In 2005, an Italian research team concluded:

“there is a high prevalence of celiac disease in those with Crohns disease, and that all patients who are diagnosed with Crohns disease should begin a gluten-free diet at the time of diagnosis.”  http://www.celiac.com/articles/915/1/Celiac-Disease-Prevalence-High-in-Patients-with-Crohns-Disease/Page1.html.

  If I was so lucky, for those years prior to being diagnosed with Celiac Disease (nearly 15 years), I might have been at least attempting a Gluten-Free Diet for my Crohn’s.  Unfortunately though, I was not aware of this until recently.

  This is NOT about blame or guilt.  No one can be blamed.  The research seems to have not been that conclusive on such issues until recently. 

  The research money has probably not been there either at least until recently. 

  Wonderfully enough, new advances in accessing research funds for Crohn’s research are still (like now) being announced.  This is NOT to complain… just to make the point that there are tons of diseases on Earth today, and Crohn’s Research Funding, though growing in recent decades, is not necessarily a top priority.  http://www.ccfa.org/research/?LMI=6.  http://www.ccfa.org/?gclid=CPW0uODIypYCFQZlswodCHuvyg.

  Virtual lectures are even now available for Crohn’s.  Just follow this link: http://www.rmei.com/CCFAVL2008/.

  New understanding and therapies are being developed with Crohn’s-targeted research funding http://news.bio-medicine.org/medicine-news-3/UVa-Health-System-wins-renewal-of–246-2-million-grant-for-Crohns-disease-research-8079-1/. 

  This is Great!!!

   And, Celiac Disease is also a subject for some funded research: http://celiaccenter.ucsd.edu/.

  OK… so now back to Celiac Disease… and Celiac and Crohn’s Disease….

  Why am I writing this? 

  Well, I have some feelings about either Disease when I read or hear their names.  And when I hear or read both names at one time, I guess I get double the feelings. 

  And that’s  OK with me.

University of Maryland Medical Center

http://www.umm.edu/celiac/index.htm.