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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.

:( Doubtful Now...
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2 posts in this topic

I have a question...

I was reading a thread and it was mentioned that the definitive test for celiac disease is the endo down the throat...I've had that and it was negative. I am going to double check that with the GI doc tomorrow when he's in, but I just know mine was negative...so why, then, would the allergy doc think I was intolerant to wheat/gluten? I didn't test allergic to wheat...

My main complaints were: diahreea (which most of my family gets from time to time anyway), and ocassional tummy aches. Mostly my diaherre came after the first big meal of the day. While I have been trying to be gluten-free, I have found things that *don't* bother me over the last few weeks (though I don't have those now since I am supposed ot be gluten-free). Now, for the most part, yeah, I do feel better on the gluten-free diet, but I still have lose/soft stools, diahreea, ect. Could the allergy doc have been wrong?

I should also clarify that I hve an ovarian cyst, if that effects anything...

-Kel

confused as hell...:(

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Hi Kel,

The endoscopy is the medical fields choice of test for diagnosing Celiac, but it is not fool proof. I also had a negative biopsy. I am not even going to have my kids biopsied at all. They all tested inconclusive on the bloodtests (positive IgG, negative on tall the IgA tests). I had a lot of similar symptoms to you and more, yet I tested negative on the blood test as well.

The problem is that the blood test will only show positive if you have damage to the intestines bad enough for the antibodies to "leak" out into the bloodstream. The biopsy depends on the skill of the doctor who does the biopsy and if they hit the right spot, since damage can be patchy. It also depends on the skill of the lab techs and doctors examining the specimen. If they are looking for worst case scenario Celiac then they will often say negative when their is minimal damage. But damage is damage. It is like the difference between a broken leg and a compound fractured broken leg. They are both going to hurt like crazy and take time to heal. One is not as bad as the other, but they are both bad. Doctor's just haven't caight up with the latest research, that shows the biopsy is not the best test.

I opted(after hitting a wall in regards to all my doctors) for testing through Enterolab. They use the latest technology in Celiac/Gluten intolerance testing. It ends up that I have the celiac gene and a gluten intolerance gene. My daughter has the same, my sons both have the gluten intolerance gene (one has two copies,and one has another type of autoimmune disorder gene that can also cause gluten intolerance). We are all producing antibodies to gluten and to dairy in our intestines, but so far the damage to the intestines is minimal in a few of us and borderline bad in one of my sons. So I am glad I know now and can help us all avoid further damage.

You can be gluten intolerant without being celiac, and you can also have either (or both) with negative blood/endoscopic biopsy tests. Please listen to your body, and not your doctor when it comes to this. If you feel you need further testing to reassure yourself (as I did) then you may want to check out Enterolab for their testing. Most US doctors are behind the times. Doctors in Italy are now doing the stool testing too, as they realise it is much better at diagnosing gluten intolerance even in its early stages.

As to why somethings bother you and others don't (I assume you are talking about gluten foods?) I read recently in a book about allergies/intolerances (from 1974, but has some quite good info, way ahead of it's time!) that for some people even a speck of the offending food will cause a reaction but for others it may take a larger amount, but the reaction will still happen eventually. I really feel this is true. Of course I am not saying it is okay to have just a little bit of gluten. It may take a larger serving for you to notice the symptoms, but with just a little bit the symptoms may be too subtle for you to notice. The damage is still being done though, so it is best to avoid as much as possible.

God bless,

Mariann

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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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