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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Many Questions - Feedback Appreciated
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Hello, I am a female in her early 50's. 8 years ago I was diagnosed with IBS. My major symptoms were diarrhea, bloating and cramps. I could go months without having any issues and then would have an outbreak. These outbreaks started getting closer and closer together, and the symptoms worse until I was pretty much in pain all the time and was afraid to go anywhere

About two months ago, after 3 particularly bad episodes with watery diarrhea (which I had never really had before) I realize that right before each one (for lunch, and the symptoms would start late in the evening) I had eaten something on a large bun (sub sandwiches & Carl's Jr. hamburger)

I had just seen something on Celiac disease, and I thought "no, couldn't be - the symptoms started so gradually, and then all of a sudden to have them all the time?" But I gave it a shot (as I had with lactose, chocolate and some other items I thought might be the issue in the past) and decided to try a gluten free diet.

After about 3 days the diarrhea cleared up. After 2 to 3 weeks, so did the cramping pain.

I then began to test myself by eating something with a tiny amount of gluten in it (like soy sauce on my rice for example) and like clockwork, in the late evening I would start cramping, and have diarrhea in the middle of the night. I did this test about 4 times, and had the same reaction each time, with the symptoms clearing up 2 or 3 days later after consuming no more gluten.

I have not seen my doctor yet for any testing, but have an appointment scheduled for the beginning of January. I know the biopsy test will not work correctly unless you have been eating gluten, but frankly, I am so uncomfortable that I am actually scared of eating it now.

So - my questions

1) Can you become sensitive to gluten so late in life?

2) Is it possible to have been able to tolerate some gluten and then suddenly be able to tolerate none?

3) Is it possible to have had only sporadic outbreaks which progressively worsened and got closer together until I was having symptoms all the time?

4) Any other advice, hints, words of wisdom are appreciated.

Thank You so much for reading this - tried to make it as short as possible :) - Dana

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1. Yes. Anytime.

2. Yes.

3. Yes.

4. Try to eat a little bit of gluten each day before any tests, if possible. (Beginning of January? 2 months? R-U-KidN-Me ? Any primary care doctor can request a celiac blood panel. Draw blood, send to lab, tah- dah. No need to wait that long, esp. if you have debilitating symptoms.) Then, no matter what the outcome, go on a gluten free diet and stick with it, as celiac tests miss a percentage of people with it, and there is currently no standard "test" for gluten intolerance.

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Yes to all.

I would have terrible "D" after eating pasta or burgers when we would go out to eat. I lived with it. The moment i went off of all gluten all my issues at the time ("D" and vomiting mainly) stopped.

I should note that i delt with this for about 9 years. I can remember the first incident of it happening. And if i didn't get "D" i'd get a bad bellyache. But it just had to be IBS right? Stupid catch all term.

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Just saw this on Facebook on The University of Chicago's page and thought of you.

"Approximately 20% of patients are older than 55 years when diagnosed with celiac disease. How old were you at diagnosis?"

You might want to look at the Celiac Center website for lots of info:

http://www.curecelia...ow-does-it-work

"I’ve heard that I don’t necessarily have to endure 12 weeks of eating gluten if I have a severe reaction. Is that true? How does it work?

The gut needs time to mount an antibody response that can be measured in the blood, which is why we recommend 12 weeks of eating gluten. If you experience symptoms immediately, it’s likely that the gut itself has quickly become damaged. In these cases, you and your medical professional could consider a shorter gluten challenge (3-4 days) and then have a biopsy.

Diagnosis is not an exact science, each person responds differently to the presence of gluten in the small intestine and the amount of time it has been there. Be sure to work with your medical professional to adjust your diet, if needed, during your gluten challenge."

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Thank You all for your responses. I was able to schedule the blood tests for the week after Thanksgiving. It sounds like that is the best place to start. Then will discuss the findings with my doctor in January.

Still doing very well on the gluten free diet with my intestinal pain completely gone. So I am sure that no matter what any test show or don't show, I will continue being gluten-free as it makes me feel so much better :)

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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