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):

Tested positive for Celiac with no traditional symptons

DianeWayans13

Recommended Posts

DianeWayans13 Newbie
DianeWayans13
Posted

I went in to an ear, nose and throat doc after months of dealing with swelling in my throat which had landed me in the ER a few times. They initially thought it was an allergic reaction but I don't respond to typical allergy treatments so suggested an ent. This doctor ordered a number of blood tests and one came back positive for possible celiac disease. He put me on a gluten free diet which I've been on now for a month but haven't noticed any change. My throat still swells out of nowhere and then subsides as it had been doing. 

I will stay on the diet for the 3 months per his instructions to see if it ends up having an effect but it doesn't seem to be doing anything so far. I have no other symptons aside from gerd from time to time when I eat too many sweets. 

Has anyone else had something similar happen to them?

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi Diane,

There is a condition called eosinophilic esophagitis that might fit you.

Open Original Shared Link

ironictruth Proficient
ironictruth
Posted

 what blood test was positive?

PinkyGurl Explorer
PinkyGurl
Posted

Sadly he should NOT have told you to go gluten free tell you see a GI doctor and have an endoscopy to get a actual diagnosis!  IMO you should get back on gluten immediately and see a GI specialist for end and biopsy.

erinmichelle Newbie
erinmichelle
Posted

What you are describing was my husband's main symptom for years before he was diagnosed.  His entire face would swell along with his throat.  Since being gluten free for over two years now, he has not had the face swelling but does feel throat tightness on occasion.  

DianeWayans13 Newbie
DianeWayans13
Posted
  • Author

Gliad (deamidated) Ab, IgG  blood test was the one I had a positive result with. 

I will ask the dr when I return in a couple months but am curious if this test would be positive without actually having a food sensitivity.

GFinDC Veteran
GFinDC
Posted
9 hours ago, DianeWayans13 said:

Gliad (deamidated) Ab, IgG  blood test was the one I had a positive result with. 

I will ask the dr when I return in a couple months but am curious if this test would be positive without actually having a food sensitivity.

Hi Diane,

The DGP IgG is very specific to celiac disease reactions.  So it wouldn't be positive for another condition.  Symptoms are not a perfectly dependable way to diagnose celiac disease.  Many people have no GI system symptoms but still have celiac disease.  They may no have symptoms at all (called silent celiac) or they may have symptoms in other body organs.  Skin, nerves, muscles, liver, brain etc can all be affected.

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

Celiac.com Sponsor (A8-M):


ironictruth Proficient
ironictruth
Posted

I was told by Celiac Disease Center at Mass General that they do not put emphasis on DGP tests as they had some trouble with them. Too many kids testing positive with negative biopsies. Interestingly, those kids were coming to the center for a reason. 

The center in Chicago informed me that at the very least DGP IGG is more reliable then IGA and weak positive IGA's can be disregarded. 

I have found studies linking DGP IGA to liver issues absent a known celiac gene or any gut damage. A further study was published on kids with elevated DGP which went negative on a normal diet. I have tested moderate positive to a combined DGP IGA/IGG test one day, but negative to separated IGA and IGG tests literally within a day or so. 

This goes against everything you will find online about the deamidated tests. You will read that they are extremely accurate. But they are still in their infancy so there is a learning curve here.

Sadly, I agree with the above folks. You should still be on gluten and get the biopsy. It sounds like you should be seeing a GI doc regardless of celiac. 

I have spent the last 18 months of my life, off gluten, on gluten, off gluten, getting scoped twice (once on gluten and once if) and trying to figure out the whole DGP thing in light of non specific inflammation that was found in my recent scope. All this, only to be told I may need to reintroduce gluten yet again.

I have been sick ever since getting back on gluten the first time. And I had a doc who literally forgot to draw the labs while I was eating it. Now we have no idea why I am still sick and it is scary. 

So find the best GI you can and start getting some testing. Keep us all posted.  

artsunshine Apprentice
artsunshine
Posted

Hi, i never had typical symptoms and i have celiac. My only symptom was horrible bone pain, and I also thought that positive celiac test is some kind of mistake. Many people dont have symptoms at all. Good luck!

cyclinglady Grand Master
cyclinglady
Posted

Diane, have you researched Mast Cell Activation Syndrome?  It is like an allergy, but not.  It is a relatively "new" disorder, but one of our old members, Jebby, has it and she is a premie baby doctor, so it is real!  

Open Original Shared Link

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...