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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.

Decoding Celiac Results
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11 posts in this topic

Hello All!

So I am semi new to this community, and I was just looking for help in trying to figure out my blood test results. I've had digestive symptoms for years, and always just thought it was a "part of life" and delt with it. After a stressful move across country, July of 2010, my symptoms worsened. It was to the point where I wanted to boycott food altogether lol

Anyway it was about a year ago that someone suggested my symptoms could be Celiac, and It took me almost a year to get around to getting tested. I went gluten free for a month or so to see how I felt, but I had already scheduled a doctors appointment at the GI office....i started eating everything bread related for a couple weeks prior to the testing, including buying a loaf of disgusting wheat bread..and eating most of the loaf...gag. I literally felt like i was dying...brain fog...fatiuge ( i cant spell...haha), severe bloating and pain, sometimes "D"...i missed work...blah blah blah...anywhoooo

Got testing done through TriCore...and this is what was all in the "celiac panel"

IgA: Sufficient

Gliadin IgA Ab: 8 (ref range 0-19 Units)

Tis. Transglut Ab IgA: 15 (ref range 0-19 Units)

it seems like its negative...and after all the research i have done, i thought there would be more included in the testing...it was really really dirt cheap so I dont know....I hope someone can help me on this...should I get retested? I cant afford to get scoped (which I hear is the Gold Standard)...Cause I have no health insurance. :(

Thank you for the help....sorry for the long rant haha

~Angie

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Welcome Angie!

The tests you listed are negative. The tests could be negative because the length of your challenge was too short. It takes time to accumulate antibodies in your blood in reaction to gluten consumption. Most celiac centers recommend between 6 and 12 weeks for the tests to be most accurate. If you choose to have more testing, continue to eat gluten, there is no need to overdo - a slice of gluten containing bread per day is sufficient.

Should you wish to ask for more blood tests:

Tissue Transglutaminase IgG

Endomisial IgA

Gliadin IgG

Deamidated Gliadin Peptide IgA and IgG

Additionally, testing for vitamin/mineral deficiencies are useful for determining if you are not absorbing nutrients properly. Vitamin/Mineral supplementation is often needed while healing.

Whether you want to pursue more testing is up to you. With negative testing you have two choices. Endoscopy or removing ALL sources of gluten to monitor for symptom improvement. Elimination of gluten is often the best test for Celiac Disease and is the only test available for Non-Celiac Gluten Intolerance. NCGI has many symptoms similar to Celiac Disease - they both have the same treatment - live gluten-free.

Good luck to you :)

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Lisa gave you great advice. :) As long as you don't need that piece of paper saying you are celiac (which from what I heard can make it harder to get health insurance) you should probably just go back to eating gluten-free. It sounds like you didn't do well reintroducing it back into your life anyways... and I hope you recover quickly from your gluten challenge.

I think I would call yourself a celiac (or NCGI depending on what a situation demands) and get back to the diet. If you did it for a month, you can do it again. :) Best wishes to you!

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Lisa gave you great advice. :) As long as you don't need that piece of paper saying you are celiac (which from what I heard can make it harder to get health insurance)

Why would it make it harder? There's no medicine to be given out. Is it because if people don't comply with the diet they get sicker?

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Why would it make it harder? There's no medicine to be given out. Is it because if people don't comply with the diet they get sicker?

I'm Canadian, so I'm just repeating what I've seen said on the forum before....

I assume that part of it is that you could get sicker and have complications if you don't comply with the diet. Many health care professionals seem to think its a difficult and expensive diet to follow.

Also, Celiac is an autoimmune disease and AI diseases seem to run in clusters. It seems that a good number of middle aged celiac sufferers have a second, third or fourth AI disease as well. I imagine it would act like a red flag alerting them that we are at higher risk to more develop more illnesses.

Then again, I'm just restating what I've seen posted elsewhere without any proof to back it up... I probably should have "kept my mouth shut" and not typed without evidence. Sorry about that. :unsure:

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I'm Canadian, so I'm just repeating what I've seen said on the forum before....

I assume that part of it is that you could get sicker and have complications if you don't comply with the diet. Many health care professionals seem to think its a difficult and expensive diet to follow.

Also, Celiac is an autoimmune disease and AI diseases seem to run in clusters. It seems that a good number of middle aged celiac sufferers have a second, third or fourth AI disease as well. I imagine it would act like a red flag alerting them that we are at higher risk to more develop more illnesses.

Then again, I'm just restating what I've seen posted elsewhere without any proof to back it up... I probably should have "kept my mouth shut" and not typed without evidence. Sorry about that. :unsure:

No worries. I was just curious. I already have asthma and cannot get insurance on my own. I can only get it through a job where they have to take you.

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Why would it make it harder? There's no medicine to be given out. Is it because if people don't comply with the diet they get sicker?

Hey Nicole and Kiki-

I've seen these claims as well. I think it stems from the history of health insurance refusing people with pre-existing conditions. This was only a problem when applying for private insurance - not from your or your spouse's employer. The recent changes to health care laws in the US now prevent health insurance companies from refusing clients due to pre-existing conditions.

As far as I know there are no repercussions from obtaining a diagnosis.

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No worries. I was just curious. I already have asthma and cannot get insurance on my own. I can only get it through a job where they have to take you.

Wow...I thought this was no longer legal. Good to know.

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Wow...I thought this was no longer legal. Good to know.

I don't know if that part of Obamacare has kicked in yet -- if it has, then it is illegal. It was true several years ago when I was in between jobs.

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P.S. I would definitely prefer to know one way or the other. I already know I can't tolerate gluten, but I'd still like to know for sure.

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Hey all, thank you for the advice! I've been eating like crap agian and thus feeling just as bad. I'm trying to get back into eating gluten free agian, but its so hard sometimes when I stop over at a friends and what not, and they are eating pizza or cookies....and i love pizza and cookies...and everything in between. :blink: I didnt know that about the health care....thats interesting...

Anywho, take care, Ill update occasionally

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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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