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Archive for the ‘Celiac Disease’ Category

Basic information about Celiac Disease (c. 2008, William T. Beverly, Ph.d.).

Why Celiac Educator?

Posted by nepeht on September 9, 2009

Without Education, Some People with Celiac Disease are in a Tailspin. (c.2009, WTB)

Without Education, Some People with Celiac Disease are in a Tailspin. Click on this picture for the story (c.2009, WTB)

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Fascinating Concept! Healthcare Costs Going Down After Celiac Diagnosis?

Posted by nepeht on April 21, 2009

Go to Gluten-Free Simplicity.com for the full story.

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Celiac Disease and Health Insurance

Posted by nepeht on January 14, 2009

  Four words: Celiac Disease & Health Insurance

  Oh boy… did  your blood pressure just go up?  Mine does every time I even think about this combination of words.  

  For years, people with Celiac Disease have been talking about having to pay higher “premium” rates due to disclosing to an insurance company (healthor life) that  they had been diagnosed with Celiac Disease.

  To quote from a response to such blog entries on Celiac.com:

“Yes, it is my understanding this is common. It can be very difficult to get life insurance once diagnosed with celiac disease. Same can be true for health insurance. it’s just a bummer, but all you can do is shop around” (Retrieved from http://www.celiac.com/gluten-free/lofiversion/index.php/t614.html, on Jan. 14, 2009).

  It appears even contactuing the State Insurance Commission Office yields no help.

  Sadly and with all due respect, I have to point out that this very thread of conversation on Celiac.com evolved (or) devolved into an open discussion about how avoid such problems by NOT report ing such health problems to the Insurance Agency.  I mean, I really cannot blame these folks for these propositions, but am I the 0nlyone here who is noticinghow otherwise good, upstanding Americans are (having to) resort(ing) to essentially “fraud” in order to obtain insurance coverage due to what appears to be health-status discrimination by the very companies who operate with the mission of preventing and fairly addressing health problems?

  Then last week — years later, I saw a blog header: “Denied for Health Insurance”, where the author wrote:

“Just an FYI that I am currently shopping for health insurance. I was sort ofdiagnosed with celiac’s 18 months ago, my testing was all negative, but gluten-free diet has changed my life. I reported to the health insurance company that I had been tested (had to divulge the upper GI) and that I had celiacs, even though the medical tests were negative. Big mistake. I was denied coverage. Denied. I am now appealing the denial.

I just want people to know that this can happen” (Retrieved from http://www.celiac.com/gluten-free/index.php?showtopic=54362, on Jan. 14, 2009).

  Within a few hours, a blogger’s response was:

Thank you for posting this. This is one of the reasons I have turned down further testing for myself. We all know that the health insurance industry’s primary concern is $, not health.”

“If you have not reported anything in writing, but only over the phone, your best bet might be to ask to speak to a supervisor and say that you were given erroneous information by the doctor’s office, which you then passed on to whomever you spoke to at the insurance company, and that [i]you do not in fact have celiac[/i], and that your medical records will support this.”

“Even if you did fill out and sign a form in writing, write another, and tell them that you just found out that you had been given wrong information by the doctor’s office, that they told you you had celiac so that you would stop eating wheat, which gives you problems, but that your bloodwork (attach a copy) was negative, so, by current medical standards, you don’t in fact have it.”

“Good luck, and please keep us posted!”  (Retrieved from http://www.celiac.com/gluten-free/index.php?showtopic=54362 , Jan. 14, 2009).

  Does anyone else see a pattern here? 

  I post this with respect and in fact, blanketed compassion for all of the bloggers I have quoted here.  I cannot blame them for their reactions, nor for the overwhelmingurge to wax like some lawyers with half-truths and non-disclosure tactics.

  Clearly, I am not the only one of us who gets an instant blood-boil upon hearing the words, : Celiac Disease & Health Insurance

  I guess I am somewhat desensitized as I have been hearingsuch cutting terms as “pre-existing” condition since my first Crohn’s surgery back in the very early 80’s.

  One of the reasons I studied Social Work was to learn ways of bringing change to a system that seems (to me at least) to be unfair.  And changes have come about over time.  But perhaps more change is needed…

  About a year ago, Nancy Lapid published an article asking: “Should Insurance Companies Have to Reimburse for the Extra Costs of Gluten-Free Food?”  (Retrieved from http://celiacdisease.about.com/b/2008/01/30/should-insurance-companies-have-to-reimburse-for-the-extra-cost-of-gluten-free-food.htm, on Jan. 14, 2009).  Naturally, this led to quite a spirited interaction of commenters at a special link: http://blogs.timesunion.com/readandreact/308/celiac-disease.

  One person even wrote… and you best prepare yourself for this one even though I would bet you already know it’s coming:

“Talk about people milking the system.
How dare these people think they are entitled to a payout for this.
This is why insurance rates are so high.

All they have to do is avoid certain foods. Yet, they are taking advantage of the system.

Comment by Alison – January 28th, 2008 @ 10:13 am” (Retrieved from http://blogs.timesunion.com/readandreact/308/celiac-disease, on Jan. 14, 2009).

   And then, of course, there are other angles, such as this which was submitted to the Lapid article’s comment thread at that time by a person who has her own Gluten-Free Blog at http://blogs.timesunion.com/glutenfree/.  She wrote:

As a person who lives a gluten-free lifestyle by medical necessity I would not expect my health insurance company to reimburse me for any portion of my food costs. I have a great relationship with my health insurer and they provide me with everything I want/need from them, namely: coverage for doctor visits, medical tests, lab work, medications (though I take none on a regular basis), and coverage for (heaven forbid!) emergencies, hospitalizations and surgeries. I am lucky and very grateful for the coverage that I have” (Retrieved from http://blogs.timesunion.com/readandreact/308/celiac-disease on Jan. 14, 2009).

  And finally, yet another whole side of this issue that really needs attention, but is often totally overlooked.  The headline from one month ago read: “I think my husband has Celiac’s disease, and we have no insurance. Can you offer me some advice?” and a pull quote that sums it up would be:

“i just feel so lost without the guidance of a doctor. i’m so upset that the economy is the way it is, and we can’t afford to see a doctor. but this is our situation. he and i rarely even get so much as the common cold, so i was surprised when he began developingthese symptoms. i wish i could get a professional in here to diagnose, but we won’t even be graduating for another 2 years. we’re just hopingeverything goes ok” (Retrieved from http://answers.yahoo.com/question/index?qid=20081210134024AAvQLnD, on Jan. 14, 2009).

  If one looks at the “Best Answer” posted below the above entry (which I will purposely NOT quote), one might see just how crazy this whole thing has become.

  According to another site (http://celiac-disease.com/have-celiac-disease-vote-for-barack-obama/) and blog (http://gluten-free-blog.blogspot.com/) Obama should have beenthe Presidential choice for all people with Celiac Disease because:

“If I had to choose just ONE issue that was important to anyone with Coeliac Disease, it would have to be that of Health Insurance and especially being able to obtain health insurance that includes mandatory and guaranteed Preexisting Conditions Coverage” (Retrieved from http://gluten-free-blog.blogspot.com/2008/11/obama-mccain-gluten-free-politics.html, on Jan. 14, 2009).

  Oh, I could go on and on with this, but I am not sure if I go any further at this point if it would really make a difference.  I can say that like many of us, I do hope that this politician is able to find his way through the murky waters of the D.C. Beltway in order to make at least this one very important campaign promise come true.

  I imagine if there really is a sincere push legislatively to get this done and if it ever looks like it can be successful, we will then hear policy statements and proposals Ad nauseam from the varous insuance companies telling us how they just love people with Celiac Disease…. and on and on and on and on and on….

  Perhaps you wish to make a difference regarding this issue.  One way to start could be to look up the Celiac Disease Center at the University of Chicago:    http://www.celiacdisease.net/advocacy .  They probably have some ideas.  And there are likely to be many other such resources around for those who are interested.

  Are you interested?  I mean, if nothing else, perhaps some day we could view those words: Celiac Disease & Health Insurance … in a nice shade of soothing Blue, instead of red.  Wouldn’t that be nice?  I don’t know, whatdaYouthink?

Posted in Celiac Disease, G-F Lifestyle | Tagged: , , , , , , | 2 Comments »

Celiac Symptom Differentiation: Malabsorption versus Malnutrition

Posted by nepeht on January 13, 2009

  I thought this was very interesting as a way of differentiating the various symptoms I might have due to Celiac Disease.  I found this on WebMD today.

  Celiac Symptoms: Mal–absorption versus Malnutrition

From WebMD about symptoms of Celiac Disease:

“Depending on the degree of malabsorption, the signs and symptoms of celiac disease vary among individuals, ranging from no symptoms, few or mild signs and symptoms, to many or severe signs and symptoms. There are two categories of signs and symptoms: 1) signs and symptoms due to malabsorption, and 2) signs and symptoms due to malnutrition including vitamin and mineral deficiencies.”

  For me, this is another way of helping me better understand and hopefully address my symptoms.

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Basic Introduction to Celiac Disease and Gluten-Sensitivity Slideshow

Posted by nepeht on December 16, 2008

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Gluten-Free Energy Diet (part 2): Energy Levels with Celiac Disease and Its Partner, Gluten-Sensitivity (Part 2)

Posted by nepeht on December 11, 2008

  OK, I’m back.  I have a little more energy now.

  One can roll around the Internet and find others talking about this issue.  At Celiac.com there has been a discussion about whether or not Energy Drinks are Gluten-Free. At the same site in a different space is a discussion about how in adjusting to the Gluten-Free diet requirements, one person finds his/her self eating Gluten-Free Cookie Dough, thus lacking energy. Meanwhile, in response, others are suggesting they eat more protein etc..

Where to go from here? (c.2008, WTB)

Where to go from here? (c.2008, WTB)

  It really seems that this is an important topic for us.  I ran across a study about Body Composition and Dietary Intakes for persons with Celiac Disease.  One of the authors’ recomendations is,

“Strict follow-up and dietary advice in terms of the choice and composition of foods seem necessary to prevent malnutrition.”

  I know that even though I have had Celiac Disease for almost 10 years and Crohn’s Disease for almost 30 years, I still have a whole lot to learn about things like nutrition among other things.  For instance, I recall the “food pyramid” from elementary school, but lets face it: (1) That was in the last century (almost midway); and (2) A lot has changed both in foods as well as in my body.  But just in case you need a primer (as do I), here is a slideshow about it.

  I was reading last night in that book, “Gluten-Free for Dummies” and I was able to put together the basic sugar/insulin/low energy versus protein/high energy concepts.  Please excuse my ignorance here.  I also discovered that one probably cannot fully discuss this topic without at least a mention of the link between Celiac Disease and Diabetes

  You see, we really are talking about the body’s primary source of energy (sugar), and how the body handles it.  Then cross this up with the idea of sugar-carrying proteins for this body being significantly altered as one attempts to achieve and maintain a gluten-free diet.  In summary about proteins,

“Protein is an essential nutrient that is important to your health. Protein consists of chains of amino acids that are used by our bodies to grow muscles, hair, nails, skin and internal organs.

Diets rich in high protein foods are often recommended for athletes and body builders. In addition, many weight loss diets such as the Atkins diet prescribe a high protein, low carb diet.

Although protein is an essential nutrient, some research suggests that too much protein can increase the risk of developing heart disease, stroke, kidney stones and osteoporosis” Quoted from HighProteinFoods.net.

  Let me remind you, I am nota Dietitian.  But some things are starting to make sense to me.  It seems one of the smart moves at this point would be to learn about which foods are both Gluten-Free and also contain proteins.  

  And this is going to be a challenge.  For instance, one can look at this website’s listing of High Protein Fast Foods, and one will immediately notice how few of them are Gluten-Free.  Bummer!!!

  OK… let’s keep looking.  So here’s a list of Fruits and if one clicks on a given fruit, one can get the reported protein value.  And here are the Veggies and their values.  And nuts & seeds etc…  You can follow that lead from here.

  How much protein do we need each day?  That is a good question.  I quote:

“Our protein needs depend on our age, size, and activity level. The standard method used by nutritionists to estimate our minimum daily protein requirement is to multiply the body weight in kilograms by .8, or weight in pounds by .37. This is the number of grams of protein that should be the daily minimum. According to this method, a person weighing 150 lbs. should eat 55 grams of protein per day, a 200-pound person should get 74 grams, and a 250-pound person, 92 grams.”  From a Low Carb Diet Website.

  What I am getting thus far is that in order to have better energy, I need to start the day differently.  More protein.  Then follow throughout the day, trying to substitute more proteins for fewer carbohydrates and fats.  Maybe I can also lower my caffeine intake and just plain out sugerrrrry stuff.

  I am not necessarily recommending a “Low-Carb” diet.  I really cannot recommend anything as far as Diet goes with good conscience.  I am just learning.  But I am going to try and apply some of this and then move on.

  More later.

Posted in Celiac Disease, G-F Cooking, G-F Diet Tips, G-F Lifestyle | Tagged: , , | Leave a Comment »

Gluten-Free Energy Diet (part 1): Energy Levels with Celiac Disease and Its Partner, Gluten-Sensitivity

Posted by nepeht on December 9, 2008

  How is your energy level these days? If you are like me then you are possibly looking for various ways to boost your energy because Celiac Disease (CD) and its Gluten-Sensitive (G-S)partner tend to take just about all I got sometimes. 

   There are always the standard recommendations for boosting energy such as eating right (woopssss!!! right there…. bang bang bang bang… “problem sir”!!!!).. 

Good, Smart, Dependable Info Does NOT Make Energy By Itself (c.2008, WTB)

Good, Smart, Dependable Info Does NOT Make Energy By Itself (c.2008, WTB)

  Even with the best information in the world, it can be difficult to “eat right” when one has CD or G-S.  First of all, the energy to follow such advice is already lacking from the start.  Then, there are other issues such as adverse cravings etc…

  I am not meaning to poo poo it all.  Just to be realistic… at least being true to my reality.

  OK… wait a minute.  I am NOT trying to bring you down.  I’m just trying relate ya see???

 I remember hearing about an early French scientist who proposed the idea that energy never really goes away, it just changes form or phase.  Well, if that is so, then where does it come from one has CD and/or a G-S problem?  Perhaps supplements could help kind of like little pieces of kindling for a fire.

  Then there is the idea of getting plenty of sleep… man sleeping is also irregular (at best) these days.

  But no kidding, I do try to eat enough veggies, fruits, proteins, dairy etc…, but it never seems to be enough to boost my energy level.  I even take B-12 injections sometimes.

  I have been curious about supplements.  I found a site that gives some specific recommendations about CD and Vitamin supplements.  Exploring this can help clue one into the various related vitamins if nothing else.  But first I need to quote from the site:

“Claims made on line about specific vitamins formulas or individual health supplements on or through this site have not been evaluated by the FDA and Vitamins on line custom vitamins, custom multivitamins, herbal supplements and health supplements are not approved to diagnose, treat, cure or prevent disease.”

  Now, I can say that this site is at http://www.mitamins.com/formulation/showFormulaDetail.do?AT=showOutDetail&actionType=formulator&dformulaID=966&diseaseName=Celiac .

  It is interesting to see the various vitamins that a person with CD or G-S might need as a supplement to her/his diet.

  I am not recommending that anyone try this.  But it is food for thought.  And I hope it is food that gives energy instead of that which taketh away.

  To be Continued … as soon as I get the energy.

 

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Discuss Celiac Disease with Doctors at Delphi Forum

Posted by nepeht on November 9, 2008

http://www.glutenfreeforum.com/index.php?showforum=6.

Website offers opportunity to discuss (online) ones Celiac Disease with a Doctor.

Posted in Celiac Disease, G-F Sites | 4 Comments »