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):

Testing Question After Gf

barbiannc

Recommended Posts

barbiannc Newbie
barbiannc
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

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

Celiac.com Sponsor (A8-M):


NanaV Rookie
NanaV
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

I'm curious, too. I had an endo biopsy years ago, and the docs never told me that being gluten-free for a year would make any difference at all. Grrrr.

 

I think they're wrong. Uninformed. And it leaves us gluten-free but undiagnosed.

cyclinglady Grand Master
cyclinglady
Posted

Your doctors are wrong!  You must be eating gluten to get an accurate result.  Check out this link to the University of Chicago's Celiac Center regarding this issue:

 

Open Original Shared Link

nvsmom Community Regular
nvsmom
Posted

The longer you are gluten-free, the higher the chances that any celiac test will yield a (false) negative result.  It IS possible to still have positive autoantibodies after 5 months gluten-free but I would say it's more likely that they will be negative. I personally still had a weak positive tTG IgA result after about 15 months gluten-free (it had fallen dramatically), but I know that my EMA IgA test became negative sometime before I was a year gluten-free.

 

After being gluten-free for 5 months you will need to complete a gluten challenge of about 2 slices of wheat bread per day for approximately 2 months before you will have accurate results.  :( It might be simpler to stay gluten-free.

 

And I agree, with a history of Hashi's, it's probably celiac disease.

 

Welcome to the board.  :)

WinterSong Community Regular
WinterSong
Posted

Flat out, your doctors are idiots. A friend of mine had a doctor who said the same thing, even after she had been gluten free for two years. Stupid doctors....

 

My blood tests were so positive they were off the charts, and it took me about a year and a half to get them down to normal, but even being gluten free for a few weeks can yield a false negative. 

 

Welcome to the board!

kareng Grand Master
kareng
Posted

While it sometimes takes a few months for antibodies to go down, That is usually people with sky-high antibody numbers.  Not everyone is that bad off.

 

Open Original Shared Link

barbiannc Newbie
barbiannc
Posted
  • Author

Thanks, everyone! Exactly what I thought. It makes me absolutely crazy that so many doctors are so misinformed. It is such a HUGE problem and so prevalent that I should think they would know the basics of it. So now the question remains......do I go through with the gluten challenge for several months to be retested or just remain gluten-free?? I guess I would like to know for sure so that I don't have to be quite as diligent in my gluten avoidance. I still don't eat it, but I'm probably not as careful as I should be in regards to ingredients that are not obviously gluten. So another question....I am due soon to have a routine colonoscopy (it's been several years since my last one). Is it feasible to ask them to do a biopsy then and if so, would this be diagnostic or do I again need to be eating gluten for it to be positive? Thanks so much for everyone's help. This is all so overwhelming and confusing.

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

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

 

Just wanted to add that another option for you would be to get the gene testing.  If you're negative for the Celiac gene, then you cannot have Celiac - you most likely have gluten sensitivity.  No need to do the gluten challenge.  That said, I agree with the others that 1) your doctor is an idiot and/or ignorant and 2) you'd have to do a gluten challenge to get a reliable Celiac test at this point.

NanaV Rookie
NanaV
Posted

I've read that one can be tested for celiac via a stool sample, EVEN if one has been gluten-free for a while. Can this really be true?

GF Lover Rising Star
GF Lover
Posted

Celiac Disease CANNOT be diagnosed by a stool sample.  I wish is was that easy. 

 

Colleen

frieze Community Regular
frieze
Posted

Just wanted to add that another option for you would be to get the gene testing.  If you're negative for the Celiac gene, then you cannot have Celiac - you most likely have gluten sensitivity.  No need to do the gluten challenge.  That said, I agree with the others that 1) your doctor is an idiot and/or ignorant and 2) you'd have to do a gluten challenge to get a reliable Celiac test at this point.

FYI, we have more than one biopsy proven celiac that does don't have those genes that post on this board.

Archived

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

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

  • Member Statistics

    • Total Members
      134,079
    • Most Online (within 30 mins)
      10,442
    jchamp080
    Newest Member
    jchamp080
    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)

  • 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...