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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Sensitive Is It Possible To Be?
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9 posts in this topic

I've been gluten free for 3 months, and after having my blood sugar go insane for the first 2 months, I am finally healing and feeling good. A friend stayed with me for 3 days recently and only ate gluten containing foods twice, a sandwich and a hamburger bun. She was really careful to clean up afterward and not share utensils or double-dip into the peanut butter jar. We also ate at the mall food court (but packed our own lunches, my friend eating her wheat bread sandwich across from me. I did touch her ziploc bag briefly), then took a trip to Whole Foods. At the end of the shopping trip I began experiencing some mild gluten symptoms which have continued for 2 days so far. Is it possible for me to be that sensitive to a bread crumb? Could I have touched something at Whole Foods? Was the table at the food court contaminated? I'm new to this gluten free diet, live alone, and have not dared to eat out yet, so I'm not sure how sensitive a person can be or if maybe I did accidentally eat something (but I can't think of anything I ate that was new). Does anyone else react to such minute things?

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It could be anything, so don't worry if you don't figure out every source.  If I eat in public, I try to wash my hands first and rinse them really well if I have been touching a lot of stuff before sitting down.  And my dear spouse will get extra paper napkins for me to lay out so nothing touches the table, even if it has been cleaned recently.   But you could have been reacting to something you ate at home, also.  It takes a while to figure out all the possible vectors that gluten can sneak in on. 

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Thanks. The napkins are a good idea. I didn't want to go overboard, but maybe it's worth it if it will keep me from reacting.

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It is possible to be that sensitive.  It can take awhile to figure out your level of sensitivity.  Don't assume the worst.  It is possible to get a crumb somewhere but not see it.  Many celiacs find that they need a gluten free household to avoid accidental gluten contamination, so that could be it.  Or, the table could easily have not been cleaned, or not cleaned well at the food court, and an unseen crumb could have gotten in your food somehow.  We always uses utensils (our own) when eating in public.  Even if you can get your hands well washed, you end up having to touch other things like the door and the chair before you get to touching your food.  

 

I hope that you feel better soon and can avoid this in the future.

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Thank you. I try and be very mindful, but I can always do better. I have to eat at a restaurant tomorrow for my sister's bachelorette party. I was already planning on bringing my own spices but now I'll bring my own silverware too.

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I have been gluten free for almost 3 years now and still get symptoms occasionally.  My boyfriend and I have a gluten free house hold but, as a grad student, I sometimes have to eat at school or pass out from lack of food.  Today I have been feeling awful! Distended belly, anxiety, exhaustion, blurred vision, foggy, bloated, faint, sad, etc.  I am always careful about the food I eat but, I guess I am more sensitive than I thought.  

 

How have people figured out their sensitivity level?  I thought I was ok as long as I didn't eat it directly but, who knows now.... 

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I have been gluten free for almost 3 years now and still get symptoms occasionally.  My boyfriend and I have a gluten free house hold but, as a grad student, I sometimes have to eat at school or pass out from lack of food.  Today I have been feeling awful! Distended belly, anxiety, exhaustion, blurred vision, foggy, bloated, faint, sad, etc.  I am always careful about the food I eat but, I guess I am more sensitive than I thought.  

 

How have people figured out their sensitivity level?  I thought I was ok as long as I didn't eat it directly but, who knows now.... 

I think most of the Super Sensitives would never eat at a school cafeteria/ food court.

I'm not extra sensitive, but I always make sure I have some safe food with me - a packet of nuts, or pack a lunch

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One way I knew I was extremely sensitive was when I ate a tiny bite of a gluten-free cookie, just to taste it.  It was from a company that is very responsible, has gluten-free facilities and tests to make sure that their food is under 20 ppm.  That tiny bite made me sick.  That way I knew that if I wanted to eat a whole cookie, it needed to be far under 20 ppm.  I have had this sort of experience many times.

 

I don't think that you need to be all that sensitive to get sick from a food court.  The people working there won't necessarily have good training in food preparation for people with allergies.  From what I have read, you do better at higher end restaurants.  I personally gave up on such things fairly early on due to too many bad experiences.  You would probably be wise to follow Kareng's and carry food with you, or go to carefully vetted places. 

 

I hope you feel better soon.

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I am pondering carrying my own table and chair.  Then I could avoid using picnic tables, but have a nicer place to eat over the summertime.  I have been told by a doctor to eat at home.  My body is being very touchy on me.  Thank God for my car oven and supply of paper utensils in the car and ready!  I bring the food, or shop at the coop for it when I go out.

 

Diana

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