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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.

Endoscopy Question
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7 posts in this topic

Hello,

I have barrett's esophagus. My dr wants me to get scoped in January for it. During my consult I mentioned that going gluten free seemed to help my GI related issues. He said that celiac is very under diagnosed in this country (he said that Europe is catching on quicker than the US) and that he will biopsy me for celiac while he is doing the scope. I mentioned that I have been trying to go gluten free for about a month now and have heard that you need to continue to eat gluten for your test to be positive if you have celiac. His response was that blood tests are more sensitive to staying on the gluten diet while being tested and that not eating gluten for a couple months before the test would not interfere with the results, as reversal of celiac related symptoms takes quite awhile.

He said I was more than welcome to "gluten up" if I wanted to, but there was no need to since I have only been gluten free for about 2 months by the time I am tested.

I just wanted to get others opinions on it, as I don't plan on having another endoscopy for many years, so I want to do the test as accurate as I can.

Thanks,

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Do not listen to your doctor. ( Website sources at the end of this post. )

I experienced the same thing with mine and my nurse.

As for an "official" reason... Check out the National Institutes of Health's site on Celiac (.GOV)

It says that for all tests to be done accurately that a person cannot be gluten free before the tests are conducted. This is for all tests whether blood or scope.

I was gluten free for a week, and in the months prior to that I had tried being vegetarian and following a pescatarian diet. My symptoms had improved with these obviously.

I read that your body can start healing your intestine within 2 weeks.

After being gluten free, "glutening up" doesn't have much affect as the blood test is testing antibodies. These antibodies are built up over time by your body and subside if they are not needed.

I suggest a new doctor. I followed through with my endoscopy with my current doctor merely because we had met our deductible for the year and if it comes back positive well that was a cheap way to find out. I have another appointment with a doctor the celiac foundation recommended after the first of the year.

With all of that said, then another site says if you have been gluten free for a while and are doing fine, it probably isn't the best idea to reintroduce it to your system.

http://www.celiac.com/articles/22446/1/Do-I-have-to-Re-introduce-Gluten-in-Order-to-have-an-Accurate-Gluten-Sensitivity-Test-Done/Page1.html

NIH:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

"Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present."

This website:

http://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.html

"First, and this applies to any of the blood tests, you must currently be on a gluten containing diet for the tests to be accurate. antibodies are produced by the immune system in response to substances that the body perceives as threatening. The immune response that your body produces is its response to being exposed to gluten in the diet and its subsequent effect on the intestinal mucosa. If there is no gluten in the diet, then there is no response that we can measure. A brief change in diet will not have a noticeable effect. If you have been gluten free for a week or so, it will not make any great difference. The response might be marginally less but the difference is insignificant because the body has not had time to respond to the change. Conversely, if you have been gluten free for a protracted period of time and decide to be tested, a brief challenge of a couple of weeks is not enough to elicit a response and get an accurate test. "

Blood testing not very accurate:

http://www.celiac.com/articles/22310/1/Blood-Testing-for-Celiac-Disease-Isnt-Very-Accurate/Page1.html

At the end of it all. I would at least get a second opinion and perhaps contact the Celiac Foundation and ask them for their recommended doctors.

Celiac Foundation:

http://www.celiac.org/

( I'm not a doctor and my response shouldn't be taken as a medically certified expert advice. )

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I'll follow up with some endoscopy related reference materials:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/diagnosis-and-testing/

http://www.mayoclinic.com/health/celiac-disease/DS00319

http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-exams-and-tests

"If you have already started a gluten-free diet before these tests are done, the doctor may suggest you or your child eat a certain amount of gluten before the tests."

"How Long Does it Take to Heal After Removing Gluten?"

http://glutendoctors.blogspot.com/2010/04/healing-time-after-removing-gluten.html

( I'm not a doctor and my response shouldn't be taken as a medically certified expert advice. )

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yes , get some gluten down you . :blink: .Your gut will react if you have coeliacs and the Dr will be able to tell from the flattened Villi..

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Prior to my endescope I was advised that the minimum amount of time that you have to go back on gluten is 6 weeks but the general consensus on this forum seems to be 2 to 3 months. I know that it's a thought to go back on gluten but if you don't you could get a false negative.

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Prior to my endescope I was advised that the minimum amount of time that you have to go back on gluten is 6 weeks but the general consensus on this forum seems to be 2 to 3 months. I know that it's a thought to go back on gluten but if you don't you could get a false negative.

My daughter was glutened for only three weeks prior to her scope. Her doctor brought the pictures out to me and said, "yep, she's got it. I'll go ahead and test the biopsy but it's pretty much just a formality." I think it depends on the person's sensitivity?

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Yes, you're right thatwe're all different and respond in different ways. My daughter went gluten free following her positive blood test and when she went for her endescope they weren't happy that she'd been gluten free for a few weeks. However she was also told immediately that she had coeliac disease.

I think that all sort of factors might come into play - length of time undiagnosed, level of damage, amount of time gluten free and amount of time back on gluten etc.

My daughter had been at GPs, emergemcy rooms and hospital consultants 20 years. She was finally so ill that she was admitted to hospital where they ran 3 or 4 tests daily. On the seventh day one of these was for coeliac. I think in her case the damage was to such an extent that a couple of weeks gluten free still revealed damage.

I was 53 at diagnosis and it appears that I've been getting misdiagnosed since I was a school child. I went back on gluten, as requested by the GI,for seven weeks before endescopy. Although it was difficult and I couldn't have done it if I'd been working at the time, I thought it was worth doing it to lessen my chance of getting a false negative. I'll never know if I would've got a positive result if I'd remained gluten free.

At the end of day, I feel that it's a personal choice to be made by weighing up all the factors.

Hope that your daughter is improving now she's gluten free.

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  • Forum Statistics

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • 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!    
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