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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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?  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
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karat514

Please Shed Some Insight On This Blood Test

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Hello all: Could you please shed some insight on this blood test.  I have the results in hand and was told things are in normal range.  It reads as follows:

 

 

Test                                                                         

 

Tissue Transglutaminase IGA

>          Transglutaminase AB (IGA)                           Flag Reference

 

                             <1  (my result)                               <4 U/ML        | CPF

 

(that is exactly how it reads.  No more no less.)

 

 

Other than being told this was normal, I have no idea if this a pretty good indicator that I DO NOT have Celiac. 

 

Thank you in advance from someone who is frustrated 

 

 

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I share your frustration that they ran only this one test :(   They did not even run the total serum IgA which would tell us if you make normal quantities of IgA and that therefore IgA testing can be relied upon.  Doctors are in love with the tTG but it can be negative in people who will test positive on other celiac blood tests like the DGP (a newer test, and more sensitive and more specific for the development of celiac, i.e., shows results earlier and damage less likely to be caused by something else if positive).  The EMA is also a very specific test for celiac but they don't normally run this unless the tTG is positive.  But your tTG IgA will not be positive if you do not produce normal quantities of IgA - so it's Catch 22.  Is there any chance of talking whoever ordered your test to also order:

 

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

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I share your frustration that they ran only this one test :(   They did not even run the total serum IgA which would tell us if you make normal quantities of IgA and that therefore IgA testing can be relied upon.  Doctors are in love with the tTG but it can be negative in people who will test positive on other celiac blood tests like the DGP (a newer test, and more sensitive and more specific for the development of celiac, i.e., shows results earlier and damage less likely to be caused by something else if positive).  The EMA is also a very specific test for celiac but they don't normally run this unless the tTG is positive.  But your tTG IgA will not be positive if you do not produce normal quantities of IgA - so it's Catch 22.  Is there any chance of talking whoever ordered your test to also order:

 

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Yes, I follow up on March 12 because on Feb. 18 I had a colonoscopy.  The reason being, Dr. leaning toward IBS but wanted to rule out other things before putting me on meds.  Said that I am at an age where things could go wrong (I'm 45).  Again, just to be on safe side. 

 

After colonoscopy when Dr was speaking with my husband, he told my hubby that test went well however, he did remove a polyp and took a few biopsies but didn't expect them to be a problem.  Therefore, he handed my husband a script for Levsin for me to take. 

 

I have not started meds.  I really do not want to take it if i can improve things with my diet.  With that being said, I have been wheat/gluten free for only one week now and compared to the way I was feeling, I feel amazing!  Still not 100% but feel very healthy like. 

 

A brief history- I was told I cried the first 2 years of my life because I had colic (was born in 67).  Always very sickly and skinny.  My mom said it wasn't until I had my appendix out (via emergency surgery at the age of 8) that I started to "fill out".  Therefore, she thought I must have been born with a bad appendix.

 

In 2003 I had my gallbladder removed so, all my bowel issues over the years, I blamed it on not having a GB.  Said "issues" mostly happens right after eating, sometimes, I haven't even finished eating and I'd be running to the bathroom.  Also, first thing in the morning as soon as my feet hit the floor i'd be running to the bathroom as well. 

 

Not to mention the bloating and gas so bad I looked pregnant and it hurt to touch as well.  And the exhaustion so bad that I would ask myself "am I really that lazy?"  I forced myself to get through days.  I'd go to bed tired and I'd wake up tired no matter how much I slept. 

 

Anyway, back to the blood test.  I'm no expert, but just from what I posted above...I'm NOT impressed! 

 

Love this site!   And have a great day!

K

Edited by karat514

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Welcome to the board. That you feel much better after being on the diet a week is a good sign that you are someone who needs to be gluten free. Now on to the bad news.... If you are going to have any more testing done for celiac you need to get back on gluten. Otherwise you risk a false negative. Too bad your GI didn't do an endo at the same time he did the other scope. That is what you need for celiac diagnosis. If when you add gluten back in your body reacts badly you do have the answer no matter what the tests results.

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IBS is a symptom not a diagnosis, aka we have no idea what is going on with your gut.

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IBS is a symptom not a diagnosis, aka we have no idea what is going on with your gut.

Agreed.  Hence the reason why I haven't been so quick to take the meds. 

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Welcome to the board. That you feel much better after being on the diet a week is a good sign that you are someone who needs to be gluten free. Now on to the bad news.... If you are going to have any more testing done for celiac you need to get back on gluten. Otherwise you risk a false negative. Too bad your GI didn't do an endo at the same time he did the other scope. That is what you need for celiac diagnosis. If when you add gluten back in your body reacts badly you do have the answer no matter what the tests results.

Thank you.  I figured I'd just try gluten free on my own and until my follow up on the 12th.  I have to admit I feel so much better that I am not looking forward to going back to gluten even short term, but I will if I must.  Both tests done at once would have been ideal but, it is what it is. 

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If you have been gluten free for only one week, it is not too late to get back on gluten right away.  That way you will not have to do a full challenge.  If you wait until the 12th, you will probably have to eat it for an additional six weeks, which will not seem very short term to you after having experienced the benefits of being gluten free (we always feel worse when we resume eating it :( )  As a matter of fact, depending on the relationship you have with the doctor, you can even call and ask him to mail you a blood slip for the other necessary tests or just stop by his office and pick it up and have the blood drawn right now; but do get back on gluten before it's too late. :unsure:    You can tell the doctor how much better you are feeling already!

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If you have been gluten free for only one week, it is not too late to get back on gluten right away.  That way you will not have to do a full challenge.  If you wait until the 12th, you will probably have to eat it for an additional six weeks, which will not seem very short term to you after having experienced the benefits of being gluten free (we always feel worse when we resume eating it :( )  As a matter of fact, depending on the relationship you have with the doctor, you can even call and ask him to mail you a blood slip for the other necessary tests or just stop by his office and pick it up and have the blood drawn right now; but do get back on gluten before it's too late. :unsure:    You can tell the doctor how much better you are feeling already!

Oh thank you but that is not what I wanted to hear.  Lol.  I just assumed feeling better after only one week was not enough time to know for sure before I reintroduce gluten.  But if this is a gluten thing then six weeks eating gluten sounds worse.   Do I have to go crazy with the gluten or can I just have small amounts here and there? I guessing if this is a gluten issue even small amounts will make me feel like crap again. 

 

Thanks,

K

Edited by karat514

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I would eat quite a bit the first day to make up for the days you haven't been eating it, but then just the equivalent of a slice or two of bread, or a few crackers or whatever.  No need to kill yourself :D   You just have to give the antibody factory enough raw material to work with :lol:   And yes, I'm sorry, it probably will make you feel like crap - or even worse.

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    admin
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    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
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    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
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    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com