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):

Recent Celiac Diagnosis And Questions

mfalbo

Recommended Posts

mfalbo Rookie
mfalbo
Posted

Hi All, I am new to this and I have some questions regarding my recent diagnosis of celiac disease.  I had to go to the doctor because I had been sick for 4-5 weeks with cold symptoms and my lymph nodes in my neck were huge and painful and after a long discussion and blood tests my doc asked if he could test me for celiacs. I said sure but I haven't had any stomach problems just some weight loss and my labs were off. And to my surprise it came back positive but I am just wondering what my results mean. These are my results

 

Endomysial Iga Ab screen -  positive titer 1:80 (standard range 0)

Gliadin AB Deamidated IGG - 53.5 (reference range for negative <20)

Gliadin AB Deamidated IGA - 130 (reference range for negative <20)

Reticulin IGA AB titer - Negative

 

It has been 2 weeks of trying to go gluten free and I have to say I do feel a bit better. 

Any info will be awesome! Thanks so much!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Here is a link to our newbie thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

My only symptom was anemia. I was shocked. But later found out that I had other issues like Osteoporosis. It seems like your doctor is willing to go with the blood test alone instead of doing a biopsy, but that is okay! Let us know if you have any questions!

SMRI Collaborator
SMRI
Posted

Hi All, I am new to this and I have some questions regarding my recent diagnosis of celiac disease.  I had to go to the doctor because I had been sick for 4-5 weeks with cold symptoms and my lymph nodes in my neck were huge and painful and after a long discussion and blood tests my doc asked if he could test me for celiacs. I said sure but I haven't had any stomach problems just some weight loss and my labs were off. And to my surprise it came back positive but I am just wondering what my results mean. These are my results

 

Endomysial Iga Ab screen -  positive titer 1:80 (standard range 0)

Gliadin AB Deamidated IGG - 53.5 (reference range for negative <20)

Gliadin AB Deamidated IGA - 130 (reference range for negative <20)

Reticulin IGA AB titer - Negative

 

It has been 2 weeks of trying to go gluten free and I have to say I do feel a bit better. 

Any info will be awesome! Thanks so much!

 

That is a pretty for sure positive.  I've recently been diagnosed as well and this board is very helpful.  Biggest thing is getting your house gluten-free or getting a zone in your kitchen gluten-free at least.  It's surprising how gluten hides in food and getting into the habit of reading every label takes a bit of work.  I'm on week 2 of being totally gluten-free but have reduced my consumption over the past month.  I'm noticing some improvements already.

GottaSki Mentor
GottaSki
Posted

Welcome!

Those tests are quite clear. The DGPs are extremely high and the endomysial titer indicates damage to the endomysial layer of the small intestine ... in simple terms - damage caused in Celiac Disease.

I am curious, did your doctor run:

Tissue Transglutaminase...also known as tTG (both IgA and IgG)?

Do read the Newbie Thread CyclingLady linked for you...it contains loads of fast forward info.

Let us know if you have any questions...the transition is not easy...but well worth the effort :)

mfalbo Rookie
mfalbo
Posted
  • Author

Welcome!

Here is a link to our newbie thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

My only symptom was anemia. I was shocked. But later found out that I had other issues like Osteoporosis. It seems like your doctor is willing to go with the blood test alone instead of doing a biopsy, but that is okay! Let us know if you have any questions!

it's so weird I would not have even thought I was also but yes things are making sense now. I've had anemia for years and I am showing some bone loss on my bone density scans.

Did you notice any deference with anything when started going gluten-free?

mfalbo Rookie
mfalbo
Posted
  • Author

That is a pretty for sure positive.  I've recently been diagnosed as well and this board is very helpful.  Biggest thing is getting your house gluten-free or getting a zone in your kitchen gluten-free at least.  It's surprising how gluten hides in food and getting into the habit of reading every label takes a bit of work.  I'm on week 2 of being totally gluten-free but have reduced my consumption over the past month.  I'm noticing some improvements already.

That's great that you are noticing improvements. What kind of things are you noticing that are improving?

mfalbo Rookie
mfalbo
Posted
  • Author

Welcome!

Those tests are quite clear. The DGPs are extremely high and the endomysial titer indicates damage to the endomysial layer of the small intestine ... in simple terms - damage caused in Celiac Disease.

I am curious, did your doctor run:

Tissue Transglutaminase...also known as tTG (both IgA and IgG)?

Do read the Newbie Thread CyclingLady linked for you...it contains loads of fast forward info.

Let us know if you have any questions...the transition is not easy...but well worth the effort :)

Hi there! No my doc did not order the tTG, what does that test look for?
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Hi there! No my doc did not order the tTG, what does that test look for?

The tTG Iga is very similar to the EMA IgA in that it would indicate damage to the intestinal damage.  The EMA IgA tends to show more advanced damage than the tTG IgA. I have rarely seen a positive EMA IgA without a positive tTG IgA.  Gottaski was probably wondering because many doctors won't even run the EMA IgA until AFTER you have had a positive tTG IgA.

 

The deaminated gliadin peptide tests (DGP IgA and DGP IgG) show an extreme intolerance to gluten (gliadin). So you've got intestinal damage and a gluten intolerance.  That is definitely celiac disease.

 

The reticulin IgA titre is quite an old test and rarely used anymore because it is not as reliable as the newer tests, meaning it can miss celiacs - it looks like it missed you.

 

This report has some more info on the tests on pages 10-12: Open Original Shared Link

 

Welcome to the board and good luck with the gluten-free diet.  :)

GottaSki Mentor
GottaSki
Posted

yep, what Nicole said!

mfalbo Rookie
mfalbo
Posted
  • Author

The tTG Iga is very similar to the EMA IgA in that it would indicate damage to the intestinal damage.  The EMA IgA tends to show more advanced damage than the tTG IgA. I have rarely seen a positive EMA IgA without a positive tTG IgA.  Gottaski was probably wondering because many doctors won't even run the EMA IgA until AFTER you have had a positive tTG IgA.

 

The deaminated gliadin peptide tests (DGP IgA and DGP IgG) show an extreme intolerance to gluten (gliadin). So you've got intestinal damage and a gluten intolerance.  That is definitely celiac disease.

 

The reticulin IgA titre is quite an old test and rarely used anymore because it is not as reliable as the newer tests, meaning it can miss celiacs - it looks like it missed you.

 

This report has some more info on the tests on pages 10-12: Open Original Shared Link

 

Welcome to the board and good luck with the gluten-free diet.   :)

Thank you so much for the info! I am so glad I found this because I have no idea what to do.  It's just hard to find out how sensitive I am because I don't have much stomach problems with it. 

cyclinglady Grand Master
cyclinglady
Posted

it's so weird I would not have even thought I was also but yes things are making sense now. I've had anemia for years and I am showing some bone loss on my bone density scans.

Did you notice any deference with anything when started going gluten-free?

The anemia resolved in six months. I will not get another bone scan until July 2015. I am on HRT, calcium, vit. D, Magnesium and exercise to build bone. My ribs and hips no longer ache when sleeping on my side, so I think I am building bone!

SMRI Collaborator
SMRI
Posted

That's great that you are noticing improvements. What kind of things are you noticing that are improving?

 

I've mainly noticed more firm stools, still not totally firm, but not D either.  I also have way less gas production :D.  I'm not AS tired but I also have some heart thing going on so it might be more of the cause of that.  Brain fog is still there but I'm rolling my eyes at myself much less :D.  I really didn't have any symptoms that I noticed except the D--was being tested for other things and they put the Celiac test in the just because of the D.  Oh, and after 15 months, my period decided to come back....I could have done with not having that come back :D.

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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...