Gluten-Free Simplicity

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Posts Tagged ‘Coeliac’

Way #40: Awareness of one’s Celiac-Related Painful Feelings might help one move toward Simplicity

Posted by nepeht on June 22, 2009

Way #40: Awareness of one’s Celiac-Related Painful Feelings might help one move toward Simplicity

  Life is not easy.  It is just that simple.  And for people with Celiac Disease, one could argue, that life is a bit more complicated, thus LESS easy that it is for many others.

  And I truly believe that not one of us deserves the Extra Pain that Celiac Disease provides for us.  I really do.

  With these assorted and abundant extra pains of ours naturally come emotions…  I mean it would be normal if we actually felt some emotions in their wake.  It is these emotions that I am writing about here.

  I get depressed, shamed, angry, wanna isolate, feel rage, serious bouts of loss, etc….. etc….. etc…..

  And that is probably a lot like many other people — with or without Celiac Disease.

  What is different though, is that we tend to get a whole lot of it and on a pretty consistent basis.  Sure, I find that the more I am able to live in a Gluten-Free way, the better I feel….  But there seems always to still be that train in that tunnel that is heading straight for me when ever I decide to acknowledge it.

  So I am just saying here that when we have such feelings, they tend to show on us… no matter what we do to hide them.  So then, rather than denying them, why not allow ourselves to feel them (within reason and safety limits)?

  FOr us with Celiac Disease, it seems these pains and their emotions are gonna come and go…. but probably come again, more often than any of our non-CD folks can really understand.

  So I am suggesting that the first step to dealing with all of that will be to accept them as part of our normal daily life… and then try to be aware of them as we learn more and more constructive ways of channelling the enormous bounty of energy they tend to generate into increasingly positive outcomes…

  Try it.  I am trying to try it… my self.

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Tonight’s Gluten-Free Menu Item Choice: Is It Celiac SAFE; or Is It Simply Gluten?

Posted by nepeht on May 8, 2009

By William T. Beverly, Ph.D., L.C.S.W.
This is the question that a typical person with Gluten intolerance is possibly asking her/his self from the time they know which restaurant they are going to be eating in tonight, to the time that they leave that establishment.

When a place has a “Gluten-Free Menu” or items that they advertise as “Gluten-Free”, a person with such a medical condition is still going to probably be a bit cautious. That is, until they know with whom they are dealing and just what they are getting.

With whom are you dealing?

Well, there are big chains that are beginning massive advertising campaigns claiming that they serve some “Gluten-Free items” and that is all well and good. At the same time, one can sometimes get a pretty scary feeling when entering such an establishment and asking a question about such an item, and the server is not at all versed on the terms “Gluten” or “Celiac”.

I guess in cases where the item is fully automated and totally hands off from the time it leaves the corporate big house to the time it is served to you, then perhaps it can be assumed to be truly “gluten-free”. But then who really wants to eat something that mechanized. I mean, even at the fastest, fast-food joints, the folks in the back at least bless your entree with a pickle or something prior to serving it.

And then there is the problem that one often encounters in massive chain operations where the consumer gets an item that is supposedly “Gluten-Free”, yet the item is served with a brand of ketchup or mayo or dressing that is known to contain gluten. Then one nudges up to the counter-server to ask about this and is met with an “I don’t know” or “If you cannot eat wheat, can you eat white bread instead?”

In fact I was at one of those “Have it your way” burger chains the other day and ordered a Double _____ “with everything except the bun”; and the counter guy, savvy as he was — and polite — whistled back, “One Double ______, Low Carb!” OK… so I didn’t say a word. I was delighted that at least he was trying…. but does “Low Carb” necessarily mean “Gluten-Free”… I don’t think soooooooooo.

Part II of With Whom are You Dealing?

OK, so then there are those wonderful mom-and-pop places that just seem to be perfect, and they are trying their best to serve their Gluten-Free-Needy customers a wonderful item and they do….. Except, they get a little touchy when one asks… nicely, “Hey, this steak is like…. mulllahhhh wonderful!!! But can you tell me…. is it marinated?” (yes)… “OK… and I love it tooo……. but how bout… , Does that marinate include any items that might contain gluten???”

Their first defense (and unfortunately it is often a defense — which it does not need to be) is. “Well that’s Jenny’s Secret Recipe and I cannot divulge…” So you explain to the waiter about the Gluten-Free thingee, while at the same time, he is wondering why his establishment actually cares about such “food preferences” and he goes back to consult with the Chef… Jenny…. or Jenny’s daughter or somebody close enough to know the secret.

Of course she gives him a list of the ingredients in the marinate because as the Chef, she is somewhat aware that the Gluten thing is in her face more and more every day now…

The Waiter returns to the table and says, “The ingredients are some herbs and spices, vinegar, mayo, beer (cannot tell you what kind), sugar, a (not-to-be-named) steak sauce, an anonymous fruit juice, and tomato paste.” “Nope, nothing in there could contain Gluten.. so, you are home free.”

“Now can you please cut into your steak and tell me if it is done to your liking?”

At this point, it is kind of hard to tell the guy……. the waiter about how almost every ingredient he mentioned could contain gluten, depending on which brand they use etc… (e.g., Gluten can be in some brands of vinegar, mayo, beer, confectioners sugar, some steak sauces, some fruit juices, and in tomato paste).

I’m Backing Off Now…

So with tons of years in food service under my belt, I say with some firmness that in every establishment, there should be at least one person who cares about this “Gluten issue”. Food service people are people too and they are typically underpaid, overworked and they have to deal constantly with social situations where they clothes smell more like their fryer grease than like the cologne that they splashed on this morning. This is a hard life. So some slack is warranted.

At the same time, as an over-educated person with years of Celiac Disease under my belt (literally un-der my-belt), I can say that this life too is difficult and unfair and some slack is definitely warranted.

So How can We Meet In the Middle?

I am not sure what the solution is going to be.

I am certain that there are two things that cannot be helpful:

  1. I do not think that half-hearted “Gluten-Free” menu and advertising overhauls in corporate America are going to do anything but aggravate the situation UNLESS… and I said, “UNLESS!!!”, those same corporate bosses are willing to also act consistently in terms of training ALL involved staff and also sincerely analyzing recipes and inventoried product brands to see that only “Gluten-Free” product makes its way to the consumer’s table. This is an expensive undertaking and I would be surprised if even the majority of those touting “Our New Gluten-Free Menu” are taking it as seriously as all this.
  2. and, at the same time: I am certain that nothing really gets solved when a person in need of a Gluten-Free meal gets visibly angry about what she/he is served and then takes out 100% of that anger on the extremely low-level staff-person who served it to them. Yes, I think ALL staff are or should be responsible in such cases, but if a person is a teenager making minimum wage and has not ever even been reasonably briefed on the “New Gluten-Free Items” thingee… then I think it is management who is in the wrong; not the line worker.

So this morning, I was going to write up a list of what kinds of dishes on restaurant menus that say they are “Gluten-Free” are likely to be safe, versus which ones are probably not. I could not write that yet because I think these types of problems — as listed above — are much grander and much more significant at this time.

Surely, I will put together a list of “probably safe” and “possibly not” Gluten-Free “safe” menu items soon. And I will publish it. But for now, I think the “Safe” thing to do would be for America’s Corporate Bosses to wax sincerely about the “Gluten-Free” issue or NOT wax at all. And I think that those of us who sometimes have emotional rants in our empty dining enjoyment quests that sometimes lead to “Gluten-Free” starvation — oh… and I have been there many times too.. — should also think next time before we blast an unsuspecting cashier the local “Minute Burger Joint”.

What do you think?

 

Read what others have said about this issue:

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Way #37: Soul Searching About Long-Term Effects of Gluten Relapse Might Help Point Toward Gluten-Free Simplicity

Posted by nepeht on January 5, 2009

Way #37: Soul Searching About Long Term Effects of Gluten Relapse Might Help Point Toward Gluten-Free Simplicity.

  In the short-term, exposure to Gluten or Gluten-Relapse for those attempting to live Gluten-Free, has varying effects on different people.  This can run from headaches, gas, other gastro problems, skin irritation, moodiness etc… to fatigue, histamine reactions and body pains.

  In the long-term, the effects of Gluten-Relapse are not 100% clear to the Scientific Community. 

  But don’t go into Denial just yet. 

Sometimes Gluten-Denial can set in like sky hooks of light (c.2009, WTB)

Sometimes Gluten-Denial can set in like sky hooks of light (c.2009, WTB)

 Let me put it this way.  In 2001, a research article reported:

“There are no conclusive data on the threshold of gluten sensitivity of coeliac patients. Information as to the long-term risk to coeliac patients exposed to small doses of gliadin is lacking. Therefore, every effort should be made to keep the diet of coeliac patients as gluten-free as possible” http://www.eurojgh.com/pt/re/ejgh/abstract.00042737-200106000-00023.htm;jsessionid=Jp5R7Tlp4q2LwvfC00j6JYyZDhvXQP1LdRJfzS4d1vhDyTlW7QfG!-482373940!181195629!8091!-1.

  One needs to first understand that the act of Science is careful, logical, deliberate and very slow.  This is OK.  If we hurried it up too much then scientific findings would be even less valid and reliable than they sometimes are.

  In a study of long-term follow-up of Celiac patients on a Gluten-Free Diet, researchers in 2002 reported,

“Celiac disease is often poorly controlled in the majority of patients on long-term treatment with a gluten-free diet as demonstrated by intestinal biopsy. Lack of adherence to strict gluten-free diet is the main reason of poorly controlled disease in adults” http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=000066757&Ausgabe=228780&ProduktNr=223838.

  In short, these articles and additional information tell us that:

  1. For a person with Celiac Disease, no amount of Gluten is known to be safe, and
  2. In the long-term, persons with Celiac Disease, even persons who are reportedly on a Gluten-Free diet, have a difficult time keeping the Celiac Disease under control.
  3. “The only treatment for celiac disease is a gluten-free diet. Doctors may ask a newly diagnosed person to work with a dietitian on a gluten-free diet plan.” http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm. “To stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating even a small amount of gluten can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person’s age at diagnosis, some problems will not improve, such as short stature and dental enamel defects”  http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm.

  Meanwhile, if not able to become and stay Gluten-Free, it is back to:

“abdominal bloating and pain
chronic diarrhea
vomiting
constipation
pale, foul-smelling, or fatty stool
weight loss
unexplained iron-deficiency anemia
fatigue
bone or joint pain
arthritis
bone loss or osteoporosis
depression or anxiety
tingling numbness in the hands and feet
seizures
missed menstrual periods
infertility or recurrent miscarriage
canker sores inside the mouth
an itchy skin rash called dermatitis herpetiformis” (http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm).

Also, consider:

There is also an increased mortality rate in celiac disease that is about two to four times that of the general population. The increased mortality is mainly due to malignancies. The increased mortality returns to that of the general population after about 5 years on a gluten-free diet. This is the main reason that patients are advised to remain on a strict gluten-free diet”  http://www.celiacdiseasecenter.columbia.edu/A_Patients/A03-WhatAre.htm.

  Back to the original idea of a Soul-Search.  Does anyone really want to live with these symptoms?  Is a trade of an occasional piece of pizza or birthday cake really worth it?

  These are questions that only a person can answer for themselves.

  Now on the other hand, in the long run, I would guess that the long-term effects of Celiac Disease and the effects of these symptoms over time would ware any normal person down.  Thus perhaps create additional problems that become not only the concern of the afflicted, but also the concern of those who have to care for this person.  Then I think, would I want to be a burden to anyone else?  No, not really.

  So it comes down to the facts that Relapses with Gluten can lead to lots of pain for me as well as pain for others.  Totally uncool!  I don’t wan to hurt myself.  And I don’t want for anyone else to hurt because of me.  Surely, the fact that I have CD is not my fault.  And shame is probably NOT an effective way to prevent Gluten-Relapse.  But with the long-term as it appears to be and with clear choices that can certainly effect the present and probably the future.  I think I can choose to remain Gluten-Free.

  As for you or anyone else, I cannot say what they “SHOULD” do.  That’s why I suggest Soul-Searching.  According to WikiAnswers, “Soul Searching” is “The act of facing one’s inmost self with courage, determined to bring every ulterior thought, emotion, and motive to light”  (http://wiki.answers.com/Q/What_does_soul_searching_mean). 

  I figure you can take it from here and do what is best.  As for me, I will try and try again.

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