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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.

Is A Biopsy Really Necessary?
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8 posts in this topic

I have done some research and was wondering if a biopsy is really necessary for either of my boys.  They are 3 and 6 and we do have a family history of Celiac.  Here are their blood test results.  

Alex

Deam Iga Index 212.3

Gliadin IgA postive

Glia IgG Index 137.9

Gliadin IgG positive

TTG IgA index greater than 100

TTG IgA AB positive

Robert

Deam Iga Index 115.5

Gliadin IgA postive

Glia IgG Index 60.1

Gliadin IgG positive

TTG IgA index greater than 100

TTG IgA AB positive

 

I found this in a chat room and it got me thinking...

"With Celiac, something like 98% of people who test positive for the TTG will indeed have a positive biopsy. In this study http://cat.inist.fr/?aModele=afficheN&cpsidt=16733112 , 48 out of 49 people with TTG > 100 had a positive celiac biopsy. This implies that there is no point doing the biopsy when TTG is > 100. For moderate TTG levels (between 20 and 100), 50% had positive biopsies, and were recommended to "continue to undergo biopsies" until diagnosed" .

 

I would LOVE to hear your opinions.

 

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Family history and that blood test alone is enough i think for a diagnosis.

 

However, that being said, the TTG doesn't always mean that the biopsy will come back positive. Often times celiac causes patchy damage or damage that is not visible to the eye. Potential areas can be missed.

 

Mine was at a 37 (with anything 1-19 normal, 20-29 low positive, 30+ strong positive). I also had some really bad symptoms that resolved once i went gluten free and a positive test for both genes (DQ8 and DQ2).

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I opted out of the endo and biopsy. The bloodwork was enough for me, and the fact that once I went gluten free I started to feel MUCH better.

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I didn't get the endo and biopsy. My blood test results were enough for me. Sometime I wonder exactly how much damage there is in there..but I do not wonder enough to get the endo done lol

It is up to you. Chances are, if their blood test results were positive, they have celiac. ESPECIALLY since you have a family history

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Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

 

I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

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Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

 

I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

thanks for your response....we are going to get the biopsy, largely in part of school requirements. 

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I didn't do the biopsy.  To gage my amount of damage and healing, I did nutrient tests last November.  In theory,since my nutrient levels were poor,  by now they should have gone up.  In reality, they have! 

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Just be aware that if the damage to the intestines is patchy, it is very possible for the damage villi to be missed. that has happened to a few around here: positive tests and negative biopsy... or positive biopsy and negative blood work.  If that happens, please assume they are celiac even if the doctors don't sign off on the celiac disease diagnosis. I think it's better safe that sorry.

 

Best wishes.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • 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
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