Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Should I Be Retested?

SarahKaye

Recommended Posts

SarahKaye Newbie
SarahKaye
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

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.

nvsmom Community Regular
nvsmom
Posted

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.  :)

IrishHeart Veteran
IrishHeart
Posted

If you are still consuming gluten on a regular basis, I'd say get tested for celiac right away.

Type 1 diabetes and celiac often go hand-in-hand.

 

Open Original Shared Link

Adalaide Mentor
Adalaide
Posted

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. Open Original Shared Link  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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,080
    • Most Online (within 30 mins)
      10,442
    AdrianJ
    Newest Member
    AdrianJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...