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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Should I Be Retested?
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5 posts in this topic

I had blood work done a year ago after a lot of things were going on and it came back like this:

 

 
Test Low Normal High Reference Range Units

 

Antigliadin Igg (Native)

    25 (H) 0-19

units

 

Note:   Cascade continues      

 

Atypical Panca

  Negative  

Negative

 

 

 

Saccharomyces Cerevisiae, Igg

  <20.0  

0.0-24.9

 

 

 

Ttg/Dgp Screen

  Negative  

Negative

 

The note said that it was "Suggestive of non-celiac gluten sensitivity. Patient may benefit from a gluten-free diet". 

 

I had the test done initially because I had a lot of symptoms around fatigue, grumpiness, mind-fog, muscle weakness/spasms, and a few other stomach issues. Since it wasn't far off and out of range, I really didn't pay attention and only tried to limit gluten.

 

A few months later, I learned that I was also very deficient in Vitamin D. I was put on a starter dose, rechecked, and then wasn't told to stay on a maintenance dose, so I thought everything was fine. Fast forward to last month. Extreme fatigue hit me hard. I was sleeping 12 hours a day, blood sugars COMPLETELY out of whack (I'm a type 1 diabetic, and I usually have very good control of my blood sugars). I was falling asleep at work, and taking a LOT more insulin than usual. I thought maybe I was fighting off a virus or something, but then it kept on. 

 

Last week, it hit me that a lot of how I felt was how I felt before the Vitamin D was introduced earlier in the year. So I started back on what my pharmacist recommended as a "maintenance" dose and I'm finding I have more energy, but it's still not as it was.

 

My question is, is it possible to have developed Celiac over time and I just didn't realize it? Or does gluten-sensitivity really effect someone that much? (Sorry if that sounds idiotic to ask... I'm really confused by all of this.) Should I be restested or just cut out gluten anyway?

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NCGI (non-celaic gluten intolerence) can effect a person much like celiac can (with the exception of the autoimmune response). I would look into it further and retest if you are still on the gluten diet.

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The antigliadin antibodies IgG (AGA IgG) was positive. That can mean you have EITHER celiac disease or non-celiac gluten intolerance (NCGI). I'm guessing the doctor said NCGI because your tTG/DGP screen was negative; the problem with that is that not all celiacs are positive in all tests. The tests used do not have 100% sensitivity (although the DGP IgG and EMA IgA are close). Really you could have either. I'm not a fan of the biopsy but in your case it's a shame it wasn't done because you might have know more definitively what type of gluten intolerance you have.

 

That all being said, you have a gluten intolerance and going gluten-free is the only treatment. Going gluten-lite won't help you enough to feel well (most likely). As a diabetic, it would be like having sugary foods only once or twice a week rather than every day or at most meals - it wouldn't be enough to make you well. KWIM?

 

Going 100% gluten-free would most likely help you feel better in the long term. Symptoms will wax and wane and will be hard to interpret but inflammation and other issues will be cropping up if you continue gluten-lite.  Diabetes is THE most commonly linked AI disease to celiac disease... I wouldn't be surprised if it's celiac disease. And yes, it can manifest at any time.  :(

 

If you want to test again before going gluten-free, you will probably have to increase your gluten content in your diet for a few weeks. Perhaps a biopsy could be ordered this time.

 

Best wishes.  :)

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While those of us with celiac are at about 1% of the population, people with type 1 diabetes run straight up to a 10% chance. http://www.cureceliacdisease.org/archives/faq/once-ive-been-diagnosed-with-celiac-disease-and-have-begun-a-gluten-free-diet-will-it-prevent-other-autoimmune-disease-such-as-diabetes  The issues of malabsorption when you have both and celiac is undiagnosed can cause your diabetes to become quite difficult to manage with both unexplained highs and lows.

 

Since it sounds like you are still eating gluten, I have to agree that getting tested is a good idea.

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