#44: Go With the Flow When Ever You Can on the Way Toward Gluten-Free Simplicity

#44: Go With the Flow When Ever You Can on the Way Toward Gluten-Free Simplicity

  Things Change.  Change changes.  And things stay the same until they change again…. sometimes.  In other words: We Cannot Control Everything.  Right? 

Change Happens! (c.2009, WTB)

Let me know if you can cause I sure could use your help.

  I trust life can really be a whole lot simpler for me when I try NOT to obsess over stuff that is beyond my control.

  No,  I cannot control the fact that I have Celiac Disease — or even Crohn’s for that matter.  But I can try to control my level of Gluten-Freeness.

  I certainly feel better when I am Gluten-Free.  And any person with Celiac Disease is likely to have a brighter future when that future is as  Gluten-Free as possible.

  So, I guess this is mostly about accepting that which ONE cannot change (having CD); and then trying to exert some power and take some responsibility for what ONE can at least try and change (her/his level of Gluten-Freeness).

  It’s like as the Winter comes, the green leaves on the trees will begin to turn and eventually fall away.  This is something — like Celiac Disease — that apparently cannot be prevented under normal (or natural)  circumstances.  ONE CANNOT Typically STOP THAT.

  On the other hand, as  the temperature gets lower, ONE can typically choose whether or not to put on warmer clothing.  One might even find that as they warm up, the leaves begin to look really charming as they change.  That is until you get stuck as the one having to rake the dead ones up off of the lawn.

  Bottom Line: I still sometimes grieve my Celiac Disease in my own special ways.  But I am NOW working like the Dickens to maintain a high level of Gluten-Freeness.  And this way, my life seems a whole lot better. 

  I hope this makes sense to you too.

Crohn’s Scholarship Funds, Football Players, and Personal Grief

  There is a fund that awards higher education scholarships to persons with Crohn’s Disease.  Great!!! http://www.crohnsandme.com/.  Now, we need a whole bunch more of these, ok??? Pretty please!!!

Small Change (c.2008, WTB)

  It was about 1981 when I was first diagnosed with Crohn’s Disease.  I have had numerous surgeries.  I survived an era where I was constantly denied health insurance (and consequently much needed health care and medications) as well as employment due to this disease.  I was also not eligible for any sort of disability coverage.  This has changed very slightly over time.  More than a thousand times, I have counted on change to make things happen.   And I mean change in two ways: as coins or funding; and as in someone making a difference.  I am grateful to David Garrard for that.  No doubt, his donations will make a great difference.  One can see the obvious hope and encouragement Mr. Garrard’s commercials have provided for certain people living with Crohn’s Disease.

  In 2003, I finally received my Ph.D. in Social Work from a very good university.  I owe about $175,000.00 for that education.  I still see discrimination by insurance companies, employers, and Government Benefits Policies due to Crohn’s disease.

  On one hand, I am very happy to see a football player do so well at his profession while also outing himself about Crohn’s Disease.  I am also Thrilled and Grateful to find there is a scholarship to help persons with Crohn’s Disease get educated.  Lord knows this is needed as Crohn’s often hinders ones ability to do physical work and to be educated is often a key to learning to work with ones mind instead.

  On the other hand, I am deeply saddened because there is a very long ways to go before people with Crohn’s Disease are given the help and compassion that they truly deserve.  In my condition, since about 21 years of age, I could not even consider playing football, or any other rough activity.  Now after living over half my life this way, I kind of grieve the fact that I could never have qualified for a physically demanding job like football or a career with great benefits like the Armed Forces.

  So, it is a celebrated fact that a Football Player with Crohn’s has gone public.  But with all due respect and a lot of gratitude, I am still waiting for other shoes to drop.  For one, I certainly hope that a whole bunch of prospective football greats with Crohn’s Disease will carefully consult with their doctors before they go out for the team this year.

  Above all, I pray that this type of good work continues and that some day a diagnosis of Crohn’s Disease will not mean anything (socially, financially or pathologically) like it did just three decades ago.

  And last, but not least, given some of the research findings I have read recently, I hope that people with Crohn’s Disease will consider going on Gluten-Free Diets.

Contributing to Good, Wise Efforts Could Help to Light Ones Path Toward Gluten-Free Simplicity

19. Contributing to Good, Wise Efforts Could Help to Light Ones Path Toward Gluten-Free Simplicity.

  At first, after being diagnosed with this and that and surviving surgeries, sick-leaves, lost jobs, astronomical medical bills, confusion, isolation etc….  I felt like pretty much just a victim.  And with Crohn’s Disease, such episodes tend to come along every few years, so there is always the dread and anxiety over it coming back and getting even worse.  I mean, how much more of me is there left to cut out.

  So, I was a “VICTIM”!!!  BUT now, I want to be a “SURVIVOR”.  OK???

  Anyway, as I started feeling more like a survivor, I started getting back my self-esteem and low and behold I started looking for ways to be pro-active with my disease(s), instead of just passively victimized.

  That has helped me feel better about almost everything and has greatly simplified my life.

  So what might be some “Good, Wise Efforts”?

• Being a celiac-, or gluten-related research participant.
• Writing a query to a manufacturer asking for information about thier Gluten-Free products.
• Asking restaurant (politely) managers for a peak at their gluten-free menus.
• Advocating for health insurance providers to give “Gluten-Free” rate discounts to subscribers.
• Modifying a favorite recipe to be just as good, when gluten-free.

  I am sure we could think of a bunch of these.

Participating in Celiac- or Gluten-Related Research

  Ever considered participating in Celiac- or Gluten-Related Research?  Are you interested in doing so?

  If you are or have been involved in clinical research, this might be old news to you.  If not, you might find this helpful.   For an example of some Celiac Disease related research one can go to: http://www.celiac.com/categories/Miscellaneous-Information-on-Celiac-Disease/Celiac-Disease-Research-Projects,-Fundraising,-Epidemiology,-Etc./

  As a professional researcher, but one who is NOT currently involved in any way in any Celiac- or Gluten-Related research, I can say two things up front:

1. Competent and safe research regarding Celiac- or Gluten-Related phenomena is extremely important to those who are not perfectly OK with having Celiac Disease or another condition negatively responsive to Gluten Exposure.  Mostly, it is important for those who are either younger than us or those who cannot now advocate for themselves.  And participation in such research is crucial to its success.
2. Secondly, I need to say that I can in no way endorse or criticize any of the research projects that I might tell you about in this blog.

  All that being said…  The NIH (National Institutes of Health) has a list of currently about 26 related studies, many of which are recruiting for participants.  One may or may not be eligible for participation and may or may not be compensated.  You can view the list at the following link:  http://www.clinicaltrials.gov/ct2/results?cond=%22Celiac+Disease%22.

  If you have ir are interested in other health conditions and you might consider participating, the following link provides search capabilities: http://www.clinicaltrials.gov/ct2/search.

  This link leads to studies related to Crohn’s disease: http://www.clinicaltrials.gov/ct2/results?cond=%22Crohn+Disease%22.

  There are probably many other studies one could get involved in.  At first though, I just wanted to list the NIH-related studies because I have confidence that researchers who comply with this organization have the least likelihood of putting human participants at risk.

  If you are interested in reports and updates on Celiac Disease research, you can got to the following sites:

• Celiac.com: http://www.gluten-free.com/pm/public_html/lists/?p=subscribe.
• Digestive Health Smart Brief: http://www.smartbrief.com/dhsb/index2.jsp?campaign=googledhsbad16b&gclid=CKnuwaHc3JYCFRJuxwodYg7Gvw.
• The Celiac Disease Newsletter: http://www.celiacdiseasenewsletter.com/.
• The Celiac Disease Foundation: http://www.celiac.org/.

  Go ahead, search for yourself.  You might find this information interesting and useful.  You might even discover a constructive way to get involved in this typically good work.

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.

Doctor-to-patient: “Here’s what’s up!”

“You have Celiac Sprue.”  stated my doctor of many years in whom I had great confidence.

This was about 8 years ago.

I had already survived decades of pretty severe Crohn’s disease and now he says my life is gonna change.  Fear engulfed me.

Looking for the light at the other end. (c.2007, wtb)

Celiac what?

About 7 years ago, after surviving Crohn’s disease for over twenty years, my gastro doc re-entered the exam room stating boldly, “well, your days as a happy eater are over.”

He then explained to me that I had celiac disease (along with other ailments).  This would mean a mandatory change in my lifestyle in general and my diet in particular.  In short, I could no longer eat foods that contained gluten.

After these last few years, I have found some ways to and ways NOT to cope effectively with this problem.  My hope is that this blog will facilitate my sharing this story with others so that they may herein find support and possibly even helpful information.

wb

Check out Celiac Disease facts at: http://www.celiaccentral.org/What_is_Celiac_/13/gclid__CP6yg4iiiZYCFQEuxwodJV06EQ/