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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.

Confused About Testing & Diagnosis
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4 posts in this topic

Okay, I had blood tests for antibodies and small bowel biopsies done 8 years ago before I was gluten-free and they were negative. Recently I had the tests done again--still negative. But I was gluten-free at the time, so I'm not sure they were accurate. Now I've had HLA tests done, which I believe detect the gene for Celiac. Those were negative. So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease? Or is that impossible since the HLA tests were negative?

I find that doctors are not good at explaining any of this stuff, and I'm so confused. And I'm still sick much of the time. The doctors now just want to say it's IBS, but I feel like IBS is a symptom, not a diagnosis.

I'm considering the Enterolab tests, but I wondered if it's worth it based on my previous test results.

Any advice would be appreciated!!

Thanks,

Judith

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Yeah, I'd say Enterolab is worth it. My biopsy was negative. My blood was a maybe, but his tests came back saying yes. For the genes too.

You might want to check out this thread.

A quote from it:

Currently the only two genes that are being called Celiac Markers are the DQ2 & DQ8(or is it DQ3 subtype 8?). Anyhow, there may come a day when these other gluten intolerance genes are also recognised as Celiac markers.

Which basically, believe means.. that the genes your doctor tested for didn't show up, but there could be other genes that your doctor didn't check for, that Enterolab does, that could cause you to have problems with gluten.

Enterolab test for genes with a cheek sample. Also tests for anti-bodies in stool. Blood tests can't always pick up on the anti-bodies, if enough aren't in the blood.

The only problem you may run into, is how long have you been gluten-free? I believe someone said you could be up to a year gluten-free for the testing for Enterolab to work, but I might be wrong there. You could try emailing them, the address is on their website. So far every time I've sent them an email, got a response back the next day.

So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease?

Well I guess you could say you're not Celiac. Celiac if I'm right, means you have damage to your small intestines from gluten. But a gluten intolerance can easily develop into Celiac, and both are treated the same way. So some people consider them the same thing. Which in a sense they are.

But if you do feel better when not eating gluten, I'd say just say off gluten. Or if you want some testing done too, then contact Enterolab. They do also check for other food intelorances if you had other questions too.

Good luck! =)

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If you have been gluten-free for many years it would affect the results of stool testing through Enterolab (unless you were looking to check to make sure you are 100% gluten-free), but it would NOT affect the results of the gene test. For $150 you can find out if you have any of the lesser known gluten intolerance genes. You already know that you don't carry the two most common Celiac genes, but a doctor I trust very much once told me that there has not been enough genetic studies done for Celiac to know that they have found all of the genes responsible for the disease. so if you obviously react to gluten then I suggest you stick with the gluten-free diet. Maybe eventually they will come up with some tests that will give us straight answers without having to consume gluten (might as well be having us all drink poison, its about the same for us!).

God bless,

Mariann

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Oops, yeah.. being gluten-free has no effect on Gene testing. Guess I should been more specific there.. thanks Mariann. =)

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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