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):

Prometheus Results In, Next Steps?


Imac

Recommended Posts

Imac Newbie

Hi all,

I've been reading avidly around here, what a wealth of resources this site has been!

I've been fighting constipation (my whole life) but with bouts of D, migraines, and recently an upsurge of fatigue, joint pain, brain fog, and bloating, waves of nausea and other GI issues.

My allergist (I've been doing immunotherapy for a few years for really bad pollen and environmental allergies) had me retested and the results came back I was moderately allergic to wheat, barley, rye, oats, rice and bananas. So he wanted me to cut it all out for 4 months and see how I did. As he explained, this only would explain an allergic reaction (hives, sneezing, rashes, etc) and not an intolerance. So I figure, time to see a GI and see if there's any connection there. My mom has her own undiagnosed GI issues and I have a cousin with crohns (same side of the family)

Fast forward through all the tests, and here' s what I know so far:

Endoscopy showed reddening of the stomach but biopsies were negative. Got put on GERD medicine but can't say I've seen much of a change.

CAT scan was normal

Prometheus testing shows "Celiac disease unlikely but does not preclude development of the disease"

I am in the 2x risk - moderate- category due to having dq8 heterozyguos gene.

My antibodies were all well within the limits, so it's not even borderline there.

My other blood tests run by my GP and a rheumatologist all are normal except I've now had a positive ANA 2 months in a row.

So my thought now is that we're probably kinda done with the celiac testing, so I'm thinking of finally going gluten free (essentially all the stuff the allergist told me to cut out has gluten in it anyways) and see if that improves my other symptoms. I am grateful that I am unlikely to have Celiac, but the search for answers has been long and frustrating.

To get to my main question. If I understand correctly, this does not eliminate gluten intolerance. Is the fact that my antibodies (IGG and IGA) are normal only related to Celiac, and not gluten in general?

Thanks for reading!


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Welcome to the board.

 

What celiac tests did they actually run? The tissue transglutaminase (tTG), deaminated gliadin peptides (DGP), and anti-endomysial antibodies (EMA) test for villi damage caused by celiac disease. The antigliadin antibodies are thought by some to show gliadin intolerance in celiac disease and non-celiac gluten intolerance (NCGI). NCGI has the same symptoms as celiac (more or less) and could be a factor for you.

 

Your symptoms also fit hypothyroidism. If you think it could be a factor for you, check your TSH (should be near a 1), free T4 and free T3 (should be in the 50-75% range of your lab's reference range), and TPO Ab. It can also account for a positive ANA.

Imac Newbie

Welcome to the board.

 

What celiac tests did they actually run? The tissue transglutaminase (tTG), deaminated gliadin peptides (DGP), and anti-endomysial antibodies (EMA) test for villi damage caused by celiac disease. The antigliadin antibodies are thought by some to show gliadin intolerance in celiac disease and non-celiac gluten intolerance (NCGI). NCGI has the same symptoms as celiac (more or less) and could be a factor for you.

Your symptoms also fit hypothyroidism. If you think it could be a factor for you, check your TSH (should be near a 1), free T4 and free T3 (should be in the 50-75% range of your lab's reference range), and TPO Ab. It can also account for a positive ANA.

 

thanks for the welcome! Prometheus ran the tTG, DGP and the EMA, and my IGA total serum was within normal range 301 in a range of 44-441.

I had a TSH in July when all my symptoms ramped up. It was a 2 (middle range by the lab normal range) and my free t4 was normal as well. I didn't see any t3 results in my lab though. Worth mentioning when I see my GP again.

The not knowing is the hardest part. Thanks for your pointers!

Archived

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

  • 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
      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
      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
      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
      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
      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...