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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.

Coping With Mis-diagnosis
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11 posts in this topic

I'm writing this because perhaps there is someone else who's hearing the same thing about those with a prior diagnosis that's being reversed.

I have a co-worker, with whom I happened to share the gluten-intolerance issue with who mentions to me that his mother was diagnosed with this about 15 years ago. (here I am thinking, wow...) Then for some strange reason a doctor tells her that she has never had this problem, she should never have gone gluten-free. So, guess what? She's now off the diet after all of those years. ok... :blink:

Then, my grandmother mentions that one of her friends had the same thing.. years and years on the diet, only for a doctor to reverse the diagnosis. She is now also off the gluten-free diet. ok... :blink:

Shame on me for not asking what the issue "really" was, but I didn't think about it until later. Here I am talking with my family and friends about the change in my life and I'm hearing all of this refuted information... that's why I put this in the "Coping" section rather than the "Doctors" section because they all make mistakes (they're human like us). Believe me, this by no means will deter me from going gluten-free and sticking strictly to it. I know I have a problem with gluten... there's no doubt in my mind.

I just had to get this off my chest, as I've heard this issue twice in the past month! I wonder if the 2nd doctors in these cases knew that if their patients were on a gluten-free diet, the blood & biopsy wouldn't show anything unusual. I wonder what led the 1st doctors to give the diagnosis in the first place (I'm assuming it was more difficult then to get a diagnosis than now) What are these doctors doing? Maybe this should be in the "Doctors" section after all... :blink:

Gretchen

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That's why they call it a medical 'practice'. They are all still practicing and WE are their guinea pigs. :lol: Maybe someday they will get it right. Sometimes practice makes perfect. But I'm not so sure with some doctors who are working with outdated celiac 'profiles' and other celiac myths and misinformation. <_<

Fortunately we know our own bodies better than any doctor can tell us with all their sophisticated tests. I still think reduction of symptoms following a gluten-free diet is a pretty good diagnostic test in itself. However, my second choice is Enterolab. :D

BURDEE

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I don't know what to think of that. It seems... backwards. Yet another sign that a lot more education is needed for doctors who are going to toy in this field. (Though, quite frankly, any doctor who's been through basic bio-chemistry ought to be able to deduce from first principles that your test will be negative if you haven't been eating gluten, so there's really no excuse, even with a lack of education on the specifics of the disease.)

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Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

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Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

You should try being dignosed over in Australia - only how many years behind? lol

A thought on the diagnosis reversal though... is it possible that because they have been gluten-free for so long that they no longer have the symptoms on being tested (fairly logical if gluten-free), but that if they return to eating gluten it'll have to be reversed again?

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That's what I'm thinking, Mydnyt. I don't know what upsets me more... the celiac diagnosis loss of credibility or the fact that these people might still be celiac and are now hurting their bodies.

As beautiful as Australia is, I sure glad I'm not there through the diagnosis.

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I'd just hope that they get themselves retested after being on gluten for a while and not wait for any serious symptoms.

Yeah, a bit behind everyone sometimes... but I've been lucky. Only 5 yrs before a new GP figured this out, and the only other prob I have my old GP picked up straight away :)

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I have had a diagnosis flip flop since 1989.

I was originally diagnosed with Celiac Disease back in 1989. After a year on the diet with no improvement, the dr. changed his diagnosis to Crohns. Well, 2 years ago, the bloodwork and biopsy confirmed Celiac Disease 100%. So I have been back and forth, back and forth.... Oh well, at least now I know 100% for sure what it is and just have to give it more time than 1 year (almost 2 yrs. on the diet and still no change in the diarrhea)......

Karen

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Karen, have you determined if you have other food intolerances that are contributing to the problem?

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Right now he has me on also a dairy free/sugar free/caffeine free/soy free diet along with the gluten free...... at least until I have the colonoscopy on September 28th. The results of the blood tests will tell us which way to go from here.... he is checking for numerous things, i.e. collagenous colitis....

I have to admit that since I have been dairy free, the gas and bloating have just about disappeared.... we just can't get rid of this darn diarrhea!!!!

Karen

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I'm right there with ya, Karen! I can't get rid of mine, either! Being gluten-free helped me gain all my weight back, and added a little energy, but nothing else has changed at all. My antibodies are still high and I still have lower back pain, abdominal bloating and pain, and a rapid heart rate. Being gluten-free wasn't the cure I was hoping for.

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    • 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? 
    • Confused
      I have not. I'll talk to my doctor about it
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