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Emerisle <[log in to unmask]>
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Wed, 25 Oct 2006 17:10:10 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

-- I do understand what you're asking, but you'll probably get scolded none the less.  I've been GF for 6 years now and although I'm as careful as I can be and I do interrogate everyone, I do get glutenized every now and then which as you stated, is a risk when dining out.  I've also found that I'm MUCH more sensitive to gluten now and I believe it's because of the occasional contamination.  Other autoimmune issues seem to be popping up lately and I can't help but wonder, gee, if I had only been more careful.  But this is how I'm choosing to deal with food...We all have to live with this disease as best we can and still feel good about ourselves.  So will it shorten our lives or make us miserable?  That's the point.  We all react differently and one never knows.

-- I totally agree with your questions and concerns.  These are the same issues that plague me everytime I want to venture out.

-- My daughter is the celiac and just does her best when out but reads every inch of the label when at  home. Use common sense and ask questions about whether or not they mix pancake batter into the omelet to make it fluffy.  Mental health and physical health go hand and hand and you need to do what works for you.
 
-- Good point or question! I think many of us do the same as you.
 
-- Five years after biopsy diagnosis of advanced celiac (at age 45) & recognizing that I am not exquisitly sensitive from a couple of certain mishaps, I've developed an attitude of OCCASIONAL (not regular) calculated risk about  a pot-luck dish or a menu item's 
ingredients  or cross-contamination risk.  I know my way around both a home and restaurant kitchen, and I have done the back-of-the-envelope calculation about how many grains of wheat in a cup of, for instance, cooked lentils (not uncommon) would exceed the measurable ppm that risks a gut reaction of any sort, if consumed regularly.   I came up with about 2-3 grains of wheat/cup.  I figure if the total probable gluten in the questionable meal does not exceed this amount, and I do not make a habit of such 
calculations, I'll be OK.  My blood serum test this summer confirmed that - I was negative for the celiac indicators.
 
--  I think that you may be on the wrong track. Because you do not have an  immediate reaction doesnot mean that you have not ingested enough  gluten to cause a reaction internally.

One problem that you may not realize is that food prepared in  commercial kitchens may have ingredients that fulfill technical  functions that you may not think about using in your own kitchen. In  Chinese cooking flour is not used to thicken sauces because food is  
usually prepared and served immediately, so corn starch  can be  used.  However, If you keep corn starch hot for any length of time it will  separate and look terrible. Therefore many commercial kitchens will use  wheat flour.  One might look at books for restaurant cooking or speak  to the people at food service companies or food technologists.

My husband developed refractory sprue after  years of taking blood  pressure pills that contained pre-geletenized starch. He had been told  by the company that there was no gluten in them. However the starch was made from wheat.  One may not really know how  sensitive they are,  or will be over time. The body can change and the  rate of reactions are under controls which may change over time. (See  epigenetics)

If you use some fast food restaurant chains speak to the head office.   In a restaurant don't ask the server,  but ask to speak to a manager.  Many in many places they do know the ingredients or will show you the  package.

-- I am not going to lecture you.  My son is 11 and is Celiac.  We have known for a year now.  We never knowingly let him eat gluten, but with soccer and gymnastics for him and my daughter in college, we are on the road a lot.  So we try to make sensible choices and have been pretty succesful.  His first blood work after diagnosis showed him to be gluten free.  He also is not real sensitive and again I know the list would condem me becauase any gluten can hurt.  He spent 2 weeks this summer at gymnastics camp, and my wife and I brought lots of GF food and were very worried after talking to the kitchen staff.  But he did fine, I talked the nurse when picking him up and never had to go to her because of stomach problems.  My feeling is, it is part of our lives, but it should not control it. 

-- Most restaurants and fast-food need to have an ingredient listing handy so asking for a manger or chef is not unreasonable but in the middle on peak time it is.  Don't assume it's okay till you mention you have a few food issues that you hope can be overcome.  Taking the food on blind faith is hard but gluten free at mainstream eateries needs to be acknowledged by the eater and server to make the experience good.
Being Gluten Intolerant or full blown Celiac is one thing and you can also be Allergic to 
Wheat which will make a difference in reactions to wheat contamination or gluten contamination.  I have a wheat allergy and have different symptoms, I also have some in the house allergic to wheat and gluten intolerant.  Your Choice, Happy Eating.
 
-- I appreciate and share your common sense approach. There are times when we have to eat out, no matter how organised we are or how much we plan ahead, and the rebel in us is not willing to buy a piece of fruit in lieu of "real food".  I agree that there is no such thing as a totally gluten-free diet. Being really strict at home all the time seems to minimise my reaction to cross-contamination and accidental ingestion when I eat out.
 
-- I totally agree with your sentiment.  We do not live in a GF bubble.  There will always be issues of cross contamination and unintentional gluten ingestion.  My philosophy is to do your best to try and minimize/eliminate exposure as much as possible.  I do not have any issues asking questions. 
 
-- Also, if you eat out lots of places and are so inclined, I recommend a little black book. You can note down eating experiences in which you asked questions so you have some info to go off in future visits. Then you can remember which places flour dusts their cheese, has a GF sauce or has a dedicated fryer :)  Happy eating! 
 
-- Everyone has to do what they feel is right for them.  I do read labels on products but am rarely surprised.  I am not particularly sensitive but I don't want to damage my gut,  however, I do not want to restrict myself unnecessarily and I don't.
 
-- I am not sure how much difference individual sensitivity makes, when the issue is not so much immediate symptoms as it is the inflammation of the villi that is the crux of the autoimmune response. Subtle effects, like lessened energy, are (as I understand it) the 
by-product of that inflammation...and really, much worse and harder to cure than the temporary, albeit quite unpleasant, headaches, gastro symptoms and so forth that occur as a result of the body's manufacturing antibodies in response to a gluten hit.
 
-- GOOD questions!!!  Please summarize!!



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