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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.

How Long Does Blood Testing Take?
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10 posts in this topic

I had blood drawn two weeks ago today. No word yet from my doctor. How long do these tests take to come back with some kind of result? I sent one email two days ago asking for an update, but no response...

Darn it! I want to know!

The doc told me she thought we'd know something by the next week, but now it's been two weeks. I couldn't stand how I was feeling so I quit the gluten again. I won't go back on it. So if this is negative I can send off for some Enterolab testing, but it would sure be nice to know before I spend the money myself.

I had the TTg IgA done only. Now I know I should have gone in better informed and asked for at least a total IgA as well.

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I had blood drawn two weeks ago today. No word yet from my doctor. How long do these tests take to come back with some kind of result? I sent one email two days ago asking for an update, but no response...

Darn it! I want to know!

The doc told me she thought we'd know something by the next week, but now it's been two weeks. I couldn't stand how I was feeling so I quit the gluten again. I won't go back on it. So if this is negative I can send off for some Enterolab testing, but it would sure be nice to know before I spend the money myself.

I had the TTg IgA done only. Now I know I should have gone in better informed and asked for at least a total IgA as well.

It only took 3 days for my blood work to come back but my doctor rushed it because I was so sick. Different labs have different processing times but you should definitely have had results by now, especially since you have contacted them. I am afraid, though, that the one test they did is not going to be enough. A FULL Celiac panel needs to be done because sometimes one test will read normal and others will be off. You just cannot diagnose celiac disease with the tTg alone. Plus, an elevated tTg is indicative of other autoimmune problems so if the other tests in the panel are not done, and the tTg comes back elevated, it could be something else besides celiac disease, like Hashimoto's thyroiditis, for one. The other tests in the panel will show more specificity.

My husband's doctor is pulling the same crap with us and I am starting to become a jerk about it. It's pretty pathetic when you have to tell a doctor how to do his job correctly! :angry: If your tTg comes back in the normal range, your doctor will tell you that you don't have celiac disease and that may not be true.

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Yes, I requested a full celiac panel, but apparently this particular lab will run these tests individually, perhaps to keep costs down. So she ordered only the one test. She told me we'd run this one and see what the results are and go from there. I went in there asking for an endoscopy, and she didn't believe I knew what it entailed! I wanted a doctor's answer in order to convince the rest of my family. I already know I can't tolerate it anymore, and I couldn't keep poisoning myself waiting for test results which have taken a lot longer than I thought they would anyway.

I am much more well informed than I was when I went in two weeks ago. Yet even then I thought I knew more than this doctor when she said I would need to open my mind to considering that this could just be IBS. Now I know just how underinformed she is. Grrr.

I had terrible brain fog lately and have had anxiety my whole life, yet both of these mysteriously disappeared when I ditched the gluten. Hmmmm.... Yeah, just IBS. /sarcasm

No anxiety!!? I still can't get over it! *happy dance*

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Call the lab - they can fax it, mail it or tell you on the phone (get ranges). I cc myself on all my labs so they get mailed to my house...the quest near me say's I can stop in and pick up a copy of the report, but I haven't needed to do that.

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Call the lab - they can fax it, mail it or tell you on the phone (get ranges). I cc myself on all my labs so they get mailed to my house...the quest near me say's I can stop in and pick up a copy of the report, but I haven't needed to do that.

That is a good idea. I have coverage through Group Health Cooperative, so it may take some digging to find out who to contact. They want everyone to go through the proper channels of course.

Thank you!

I'll definitely post here when I know something more.

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I bugged the right person, and got my results back today. Finally. With an apology. "Well, it was negative, so no alert was issued..."

I had been inadvertantly gluten free for about a month when I reglutened myself with horrible consequences. With a little googling I found this site and many others that describe everything that was wrong with me, why the particular diet I was on had helped me, and why I felt so sh!tty now.

I immediately quit eating gluten, but then decided I needed some confirmation through testing so I went back on it. I got a surprisingly quick appointment for a blood draw and had only been back on gluten for two days when they took blood. I explained to the doctor that I expected a false negative, and she told me that was impossible. I already knew better, but she didn't want to hear it. An antibody is always there, so it won't go away if you quit eating a food, she says. We know better here, don't we?

Anyway, here's my results after being mostly gluten free for more than a month with two days of reexposure before blood draw:

TISSUE TRANSGLUTAMINASE, IGA

4.93 0 - 20 UNITS Fin

Comment:

Less than 20 units ..... NEGATIVE

20 - 30 units .......... Weak Positive

Greater than 30 units .. Moderate to Strong Posit

There we go. Now I've seen some people on some sites say that ANY reaction is a bad thing, so this confirms in my mind that I don't need the poison in my diet. Plus, my subjective experience on the diet is really all the confirmation I need.

Off to Enterolabs! I do still want something concrete to convince family members with similar symptoms. Because my subjective experience isn't good enough evidence for anyone else to quit eating "all those yummy foods. What a hassle that would be!"

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Presto,

While you're at it, I'd be looking for a new doctor. :blink:

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I explained to the doctor that I expected a false negative, and she told me that was impossible. I already knew better, but she didn't want to hear it. An antibody is always there, so it won't go away if you quit eating a food, she says. We know better here, don't we?

Anyway, here's my results after being mostly gluten free for more than a month with two days of reexposure before blood draw:

TISSUE TRANSGLUTAMINASE, IGA

4.93 0 - 20 UNITS Fin

We don't know if your IgA deficient, I have 5 IgA & still made 5 antibodies to tTg IgA. I know what all of them are up to...lol

You might have had a shot showing tTG IgG after a month, (it may be still high - idk), but IgA goes down real quick. It is very sad when the patient knows more then the dr. You should find a competent gastro, they can see other things (anemia, nutrient deficiencies) in your past labs. Get more tests if you need too.

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I explained to the doctor that I expected a false negative, and she told me that was impossible. I already knew better, but she didn't want to hear it. An antibody is always there, so it won't go away if you quit eating a food, she says. We know better here, don't we?

That's exactly what the PA that took my blood said. "We're checking for antibodies, they're always in your blood." How did I know my panel was going to be negative? B)

Despite that, I go to the same GP (NOT the PA) because I really like her. I just refuse to see the PA. But my GP sent me to a wonderful GI, and that has really made the difference.

And just to echo another poster: I am IgA deficient. Which is why my bloodwork showed up negative. And of course she didn't order the IgG version. It's not uncommon, and to be IgA deficient is no big deal. Unless you want to be tested for Celiac.

My GI ended up doing the gene test and using that with my dietary response to give me a dx. It may be worth checking into.

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It ever hurts to seek a second opinion, but asking for a referral to a GI doctor is always the best idea. GPs are just that: General Practitioners. A good one will refer you to a specialist for accurate diagnosis.

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    • 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
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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