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      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Used to be super sensitive- and now not?
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Hey everyone! New poster here (have been stalking the forum for years!)

I was diagnosed 6 years ago. Back then I was super sensitive.  I would react from most restaurants and eating at other people's home. I had to get new pots/pans etc. So needless to say for the first 3-4 years I ate almost exclusively at home because I lived in fear. But as you all know, life changes. I got divorced. I started dating. I went on my first date in YEARS and we went out to a restaurant I knew and could eat at (he was totally clueless to that fact). After dinner we went to a bar ... and he ordered french fries. Normally I wouldn't eat anything from a shared fryer, but I felt pressure to be "normal" and so I ate those fries, knowing I would probably get sick. But the weird thing is- I didn't. It has been about year of me eating at places I wouldn't even dream of years ago- and I haven't gotten sick nearly as many times I used to. Now I know, I shouldn't be eating these things and I do keep a limit on it. I am not outright eating anything with gluten in the ingredients but I am eating at places I would think have high cross contamination risks. 

 

 Just wondering- has anyone else gone from super sensitive to not as sensitive? Or have experienced a lessening in their symptoms with their gluten attacks? I used to have attacks that would last almost an entire day accompanied by a whole week worth of various symptoms. Now its just as if I ate something that didn't agree with me and feeling a little under the weather after wards. 

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1 hour ago, Carah said:

Hey everyone! New poster here (have been stalking the forum for years!)

I was diagnosed 6 years ago. Back then I was super sensitive.  I would react from most restaurants and eating at other people's home. I had to get new pots/pans etc. So needless to say for the first 3-4 years I ate almost exclusively at home because I lived in fear. But as you all know, life changes. I got divorced. I started dating. I went on my first date in YEARS and we went out to a restaurant I knew and could eat at (he was totally clueless to that fact). After dinner we went to a bar ... and he ordered french fries. Normally I wouldn't eat anything from a shared fryer, but I felt pressure to be "normal" and so I ate those fries, knowing I would probably get sick. But the weird thing is- I didn't. It has been about year of me eating at places I wouldn't even dream of years ago- and I haven't gotten sick nearly as many times I used to. Now I know, I shouldn't be eating these things and I do keep a limit on it. I am not outright eating anything with gluten in the ingredients but I am eating at places I would think have high cross contamination risks. 

 

 Just wondering- has anyone else gone from super sensitive to not as sensitive? Or have experienced a lessening in their symptoms with their gluten attacks? I used to have attacks that would last almost an entire day accompanied by a whole week worth of various symptoms. Now its just as if I ate something that didn't agree with me and feeling a little under the weather after wards. 

Carah,

I think I am in that category.

see my blog post where I discuss my experience and asked the same question "It has been 4 years is it now safe to eat gluten again"

I think our stomach acid protects us against many of the foods/proteins we eat and when it is too low our autoimmune system gets activated.  70% of our immune is in the small intestine so it makes sense this is where we would first react to proteins/virus especially if our defenses are low.

There is a great discussion today about new research that indicates that possibly a virus could of triggered our immune response first to react to gluten then after that our bodies constantly react to gluten but this give us hope that someday celiac's might be able to eat gluten if we can reset our immune system.

I am glad to see your reactions are only minor in nature now but know you might be in the silent phase of the disease. 

You may be in the NCGS phase.

This article explains well (I think) what the differences are between what it means to be an NCGS candidate or a Celiac disease candidate.

http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html

but simply stated your immune response is triggered in the NCGS phase until the Villi becomes flattened in the formal Celiac disease diagnosis stage but they really are the same disease in different stages/phase triggered by the the body mistakenly attacking the gluten for a virus.

It sounds like you might be in the NCGS phase now. . . because as the article notes the treatment for each NCGS or Celiac disease is the same and both disease/phases get better/improve after 6 months of being gluten free.

More study is needed on this topic but in theory if your immune system resets itself  after a certain period of time say 6 months as this article notes who knows someday they might be able give us a vaccine for gluten.

quoting

"The new study also found that it took about six months of a completely gluten-free diet for symptoms to subside." and sounds like what you might be noticing/describing.

I would also recommend this thread where some of these same issues are discussed.

****this is not medical advice

 I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. 

posterboy,

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Posted (edited)

Here is my take.  First, were you correctly diagnosed?  Do you have all the lab results?  Second, celiac disease issues can wax and wane.  I have had two glutenings since my diagnosis four years ago.  Each time was so different that I had to ask my GI to check my antibodies to confirm.  The only consistent thing was the long recovery.  Did I mention that I was accidentally diagnosed by my GI during a consult for a routine colonoscopy?  At the time I had no GI symptoms.  I was very anemic, but I was going through menopause and I already had a genetic anemia.  My GI suspected celiac disease and he was right.   Third, when was your last antibodies test?  This should be done annually.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

You might just have just evolved into a silent celiac.  

I hope you figure it out!  

Edited by cyclinglady
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Celiac disease does not go away.  Once you are healed, there are a lot of reasons why your reactions may be lighter or appear non-existent.  

- it may take multiple exposures for your body  to produce enough antibodies to start a reaction

- a healed gut may be able to handle a small amount of antibody "attack"

-some people have a higher tolerance for pain/symptoms

-you may not recognize something as a result of gluten - for example a headache/migraine

 

Continued exposures to gluten will result in damage, even if you think you are not feeling it.

 

NOw if you don't actually have Celiac - you may have fixed whatever the issue was or its a FODMAPS issue and, as long as your total FODMAP is low, a small amount of a high FODMAP food (wheat) is fine.

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