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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Blood Test Came Back Positive, Now For The Biopsy
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I got my blood test back last week as a "positive" for Celiacs and have since cut out all gluten (obviously) besides a couple things with soy sauce before I knew that had wheat. I've been limiting gluten intake since 2010 when I got an IBS diagnosis and made the assumption that I was at least gluten sensitive.

 

But now I'm waiting for the referral from my university health center to go talk to a gastroenterologist about getting the biopsy done to confirm everything. I have a couple questions...

  1. Is the biopsy really necessary? I'm just super nervous about it and have a busy schedule due to being in college.
  2. What's the prep like? My mom has Chrons so I've grown up watching the yearly colonoscopy prep with years of not so fond memories of her crying through all the nasty stuff she had to drink.
  3. What's recovery like? 

As is probably obvious I'm super nervous as well as a bit frustrated with how long my university is taking to get me the referrals and information I need to get set up. Any answers or help is more than welcome. 

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I finally got an appointment to meet with a gastroenterologist next week to talk about getting my biopsy done. What are some questions I should ask? 

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Please do not stop eating gluten until all your testing is done!  If you stop eating before an endoscopy, you will start to heal and they won't see damage.  You will then be told you do NOT have celiac when in fact you likely do.

 

Others know more about the endoscopy, but you do need to ask how many samples they plan to take, and negotiate to make sure they take enough.  Sometimes doctors do only a very few...2 or 3...and that is NOT ENOUGH.  Hopefully others will be along who have more experience with that part of the testing.

 

Do you know which bloodwork they did?  It is very helpful if you can get copies of the results so you know exactly what was tested, and what your levels are.  That way, if they did skimpy testing, you can ask for a more complete panel.  Sometimes they only test one part of the celiac spectrum.

 

Oh...forgive my rudeness...welcome to the forum!  I love your avatar...is that you?  Where was it taken?

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Please do not stop eating gluten until all your testing is done!  If you stop eating before an endoscopy, you will start to heal and they won't see damage.  You will then be told you do NOT have celiac when in fact you likely do.

 

Others know more about the endoscopy, but you do need to ask how many samples they plan to take, and negotiate to make sure they take enough.  Sometimes doctors do only a very few...2 or 3...and that is NOT ENOUGH.  Hopefully others will be along who have more experience with that part of the testing.

 

Do you know which bloodwork they did?  It is very helpful if you can get copies of the results so you know exactly what was tested, and what your levels are.  That way, if they did skimpy testing, you can ask for a more complete panel.  Sometimes they only test one part of the celiac spectrum.

 

Oh...forgive my rudeness...welcome to the forum!  I love your avatar...is that you?  Where was it taken?

 

What's a "safe" amount to eat? I'm feeling so much better and don't want to hit the "skipping classes" level of pain that got me to get tested in the first place. Would a couple tortillas a day amount maintain the damage (gosh that sounds so wrong) or should I have one last month of just eating like I used to? 

 

As to the blood tests, I have no idea what level of testing they did. I just got an email saying "Your blood work came back positive. Stop eating gluten. I'll give you a referral if you want to get a biopsy" (somewhat paraphrased). 

 

For the picture: It's at Cheaha State Park in Alabama, at the highest point in the state. 

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I think "they" say that a slice or two of bread, or a good  serving of crackers a day would be sufficient. 

 

I know it's crazy to keep yourself sick in order to get answers, but unfortunately that's what it takes!

 

If you have the will to keep to a gluten free diet for life, you could accept the doctor's diagnosis from blood work (a lot of docs won't diagnose on blood work alone!) and skip the endoscopy.

 

You'll get mixed answers if you ask whether you should do the scope or not, some will say "yes" some will say "why bother".  In part, a positive scope can solidify your determination to be disciplined about gluten consumption...I would get a copy of my blood tests and see exactly what they tested.  If they did a full panel, and several tests were positive, that is a pretty strong indication that the celiac diagnosis is correct.

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Welcome to the forum.  :) I like your avatar too. I'm from western Canada, and I've never thought about Alabama being hilly or mountainous... I have much to learn.  ;)

 

I am normally one of the peope who says "why bother" when it comes to a biopsy after positive blood work. If the doctor doesn't sample the affected/damaged areas then a celiac patient might be told it's not celiac and continue to eat gluten, so I always think it's best to run with the positive test and just start the gluten-free diet.

 

In your case though, because you have crohns in the family, it might be a good idea to check out your insides just to confirm it's not crohns. maybe get checked from both ends while your under...

 

If you are sure it's not crohns though, I would go back to my usual "why bother" stance.  :D

 

Good luck with whatever you decide.

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Welcome to the forum.  :) I like your avatar too. I'm from western Canada, and I've never thought about Alabama being hilly or mountainous... I have much to learn.  ;)

 

I am normally one of the peope who says "why bother" when it comes to a biopsy after positive blood work. If the doctor doesn't sample the affected/damaged areas then a celiac patient might be told it's not celiac and continue to eat gluten, so I always think it's best to run with the positive test and just start the gluten-free diet.

 

In your case though, because you have crohns in the family, it might be a good idea to check out your insides just to confirm it's not crohns. maybe get checked from both ends while your under...

 

If you are sure it's not crohns though, I would go back to my usual "why bother" stance.  :D

 

Thanks for the welcome. Alabama isn't really hilly, the highest point is just over 2400ft (730m).

 

I had a fluoroscopy for my colon spasms and to check for Crohns when I was diagnosed with IBS a few years ago, and that came out clear. Auto-immune disorders run rampant on my mom's side but we all have different ones, so mine is celiacs. 

 

As to "why bother," I got my blood testing done at the university health clinic where they're notorious for bad information, so I'd rather have everything double checked by a gastro. But thanks for your input! I'm just really nervous so I want to have all the answers now not after my appointment on Friday  :P

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You are already getting bad information - you should not have been told to stop eating gluten before the testing is done.  Even a couple of weeks gluten free is enough to allow thing to heal (in some people.)  Resuming a gluten filled diet may not cause any measurable damage for several months.

 

Certainly have it done (but start eating gluten again immediately!) and know that if it is negative, you still probably have celiac.  The blood tests are rarely falsely positive, but the biopsy is frequently falsely negative.  Hope that makes sense.

 

Once it is done, go gluten free (100%) and start feeling good again.

 

Best of luck to you.

 

Cara

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I just had an endoscopy and colonoscopy and let me tell you, the endo was a piece of cake (so to speak)! You don't have to do any of that awful prep like for a colonoscopy. I feel your mom's pain but don't worry,  the endo is nothing like that.

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To begin with, do not fear a endoscopy/biopsy at all. It is considered considerably more tolerable than a colonoscopy. When you think about it, it is natural for things to go down your throat into your stomach but not up your rectum. So naturally, an endoscopy is easier for the body to accept. I was so concerned over my endoscopy and even with my doctor spending his sweet time looking around and taking nearly a dozen biopsies I couldn't even remember it, when he took it out I remember muttering, is that it?

Now for the necessity of a biopsy,

"
Will the biopsy continue to be the gold standard for diagnosis?

It’s very likely that the biopsy will remain the gold standard for years to come; approximately 90% of new cases are diagnosed using an endoscopic biopsy as part of the diagnosis.

Only in rare cases is a diagnosis made without a biopsy as part of the diagnosis. In these rare cases a patient must have at least one of the genes for celiac disease, tTG and EMA elevated more than 10x normal, and a positive response to a gluten-free diet." - http://www.cureceliacdisease.org/archives/faq/will-the-biopsy-continue-to-be-the-gold-standard-for-diagnosis

In my opinion a biopsy is necessary for many reasons. Reason one is obviously being that, despite what Cara said, ruling out false positives and confirming Celiac. Celiac blood results require more interpretation than just saying "oh its positive, you have it!". To begin with, we don't even know what blood tests were run, what if it was the AGA IgG or IgA that was positive, and a slight one at that? Those tests are loaded with false positives and many labs have been slow to adapt to the more accurate DGP form. Also, depending on your own medical background some elevated tests can be due to something else, for example, the TTG IgA is believed to be falsely positive 1-3 percent of the time in healthy populations while in people with type 1 diabetes it will provide false positives about 20 percent of the time:


 

"Is it possible to have a positive blood test, but not have celiac disease?

Yes, blood work can be falsely positive, as can any test in medicine, especially at low titers. However, it may be that the biopsy was done or read incorrectly or that there’s not yet enough damage in the small intestine to diagnose celiac disease. A second opinion at a celiac center can help clarify a diagnosis.

False positives vary between the tests and also between the populations considered. For instance, tTG is falsely positive in about 1-3% of people in general, but in about 20% of those with Type 1 Diabetes or other autoimmune conditions. EMA, on the other hand, has basicallyno false positives.

You could consider a genetic and EMA test to assist with your diagnosis. In certain cases these can provide a strong enough indication to diagnose the disease when in conjunction with a positive response to a gluten-free diet." http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-a-positive-blood-test-but-not-have-celiac-disease

 

"In blood tests, are false positives less common than false negatives?

Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac) and, although less commonly, falsely negative 1-2% of the time (i.e., being normal when a person actually has celiac)." http://www.cureceliacdisease.org/archives/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives

Another reason for biopsy, noting damage to have a baseline in case problems arise in the future. There is something called refractory Celiac, and despite being rare, can still happen. In this condition the intestine never fully heals despite being on a strict gluten free diet. Also the endoscopy can look for other issues, like acid reflux and other possible intestinal issues that can go along with Celiac. A lot of people want that added comfort of truly knowing what is going on and never having to second guess anything.

At this point, I would recommend getting a copy of your blood results and posting them here for further interpretation. Good luck and I hope you start to feel better soon! P.s- I am in University too so I truly know that feel of the added stress. What are you taking? You can always private message me if you need some support, it always helps to have someone going through a similar situation as you.

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Thanks for all your responses!

I'm going to add gluten back in at breakfast (my body used to handle that better than later in the day) in the form of the neglected rice krispies still in my pantry and slowly finishing off the Girl Scout cookies my mom sent me two days before my blood test came back positive. 

I'm also going to go by the health center and see if I can convince them to give me my lab results and the like so I can 1) post it here for the more experienced of you to help me interpret and 2) so I can take them to my gastro appointment on Friday along with my long list of questions. 

 

I got CC glutened this weekend and it did not end well so I'm a bit nervous about going back on but I've been thoroughly convinced that I have to so my tests are more accurate. I'm a lot calmer about the whole process than when I first began this thread, so again thank you so much for all your help! I did still have a breakdown in the middle of the dining hall when they told me that all I could eat there that day was hamburgers with the rock hard gluten-free buns, but the survey they've been pushing got a scathing review of what they do for gluten intolerance. 

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Be sure to let your doctor know your reaction to the challenge if your reaction is severe. Some wise doctors will diagnose based on positive bloods and a severe reaction to adding gluten back in. There are some of us who will have a really bad reaction even if we have only been gluten-free for a short time. Not saying that will happen to you but if it does call the doctor's office immediately as some will tell you to stop the challenge at that point.

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I got a copy of my blood tests today! From what I can tell I'm a strong positive. But I was also right in that my university health center was not super thorough, so I'm glad I've got the gastro appointment set up for Friday. I'm going to try to copy it here as precisely as possible

 

Test name ----------- Results --- Units ----- Range

Tissue Transglut, IGA -- 90.8 ------ AB/Units -- 0.0-19.9

Notes:                                              AB/Units

          Negative                                  < 20.0

          Weak Positive                        20.0-30.0

          Moderate to strong positive    > 30.0

IGA ----------------------- 114 ---------mg/dL------70-400

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That is a very high result. Keep in mind TTG can also be elevated in Crohn's, which your mother had. Along with the biopsy it will probably be worth your while to get the Deamidated Gliadin IgA/IgG tests along with the endomysial. That will help isolate the potential causes.

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So I messed up. I was finally sold on the "eat gluten beforehand" and ready to go in and get all my testing finished two Fridays ago. 

 

And then I got sick. Not glutened sick but flu sick and decided in my 102 fevered state that it would be better for me to heal if I took gluten back out. I was also stuck in my gluten-free apartment for days and as a result of only eating gluten-free grains and fruit for a few days I passed out twice on the morning of my appointment with the gastro. I had to call and say I couldn't make it because my vision was spotty and I was still not able to sit up without severe dizziness when I was supposed to drive to the appointment. I got it rescheduled for this coming Friday so that's back on track. The only issue is that when I was home for spring break last week, I got slightly cross contaminated either from the 20+ year old waffle iron at home or a local ice cream shop (though they took all necessary precautions for me). This was after a week and a half of being totally gluten free. My reaction was bad enough, coupled with the flu recovery, that my parents were close to buying an extra ticket and flying with me back to school. I looked awful, was completely nauseous and had the normal bowel movement issues (not full D but close). 

 

So here's what I'm worried about now. I had such a bad reaction to being cross contaminated, not even eating straight gluten. If the Dr. says I should still do the biopsy and that I need to go back on gluten, I'm at the point in my semester where I can't handle having the brain fog (I'm still in a fog from the flu) and needing to stay that close to a bathroom all the time. I have no idea how I lived like that before though I think I caught the full blown celiac's pretty soon after that switch got flipped.

What do I do? Going back on gluten could jeopardize my grades with the extra time I have to spend resting and recovering and the brain fog kills my response time (I have timed oral drills in Russian). I'm also in the last planning and organizing stages for my dance performance in a few weeks which increases my stress levels to the point that eating any gluten or junk in general also makes my IBS act up, which renders me unable to move: not so good for the dancing. 

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So I messed up. I was finally sold on the "eat gluten beforehand" and ready to go in and get all my testing finished two Fridays ago. 

 

And then I got sick. Not glutened sick but flu sick and decided in my 102 fevered state that it would be better for me to heal if I took gluten back out. I was also stuck in my gluten-free apartment for days and as a result of only eating gluten-free grains and fruit for a few days I passed out twice on the morning of my appointment with the gastro. I had to call and say I couldn't make it because my vision was spotty and I was still not able to sit up without severe dizziness when I was supposed to drive to the appointment. I got it rescheduled for this coming Friday so that's back on track. The only issue is that when I was home for spring break last week, I got slightly cross contaminated either from the 20+ year old waffle iron at home or a local ice cream shop (though they took all necessary precautions for me). This was after a week and a half of being totally gluten free. My reaction was bad enough, coupled with the flu recovery, that my parents were close to buying an extra ticket and flying with me back to school. I looked awful, was completely nauseous and had the normal bowel movement issues (not full D but close). 

 

So here's what I'm worried about now. I had such a bad reaction to being cross contaminated, not even eating straight gluten. If the Dr. says I should still do the biopsy and that I need to go back on gluten, I'm at the point in my semester where I can't handle having the brain fog (I'm still in a fog from the flu) and needing to stay that close to a bathroom all the time. I have no idea how I lived like that before though I think I caught the full blown celiac's pretty soon after that switch got flipped.

What do I do? Going back on gluten could jeopardize my grades with the extra time I have to spend resting and recovering and the brain fog kills my response time (I have timed oral drills in Russian). I'm also in the last planning and organizing stages for my dance performance in a few weeks which increases my stress levels to the point that eating any gluten or junk in general also makes my IBS act up, which renders me unable to move: not so good for the dancing. 

 

I generally say stay on gluten until the endoscopy is complete.  In this case I think you need to do what is best for you...if you are having horrid reactions to CC I would not intentionally eat gluten again.  I would have the endoscopy done.  While remaining on gluten gives the best possible chance of accurate biopsy -- it is still completely possible to have visual damage, positive biopsy or other evidence in the digestive system of celiac disease.

 

Don't put your whole semester in jeopardy for the possibility of a better endoscopic result -- at least this is what I would advise my own college aged children.

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