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):

Ttg Is Back Down- Question About My Story

KristinIrwin

Recommended Posts

KristinIrwin Apprentice
KristinIrwin
Posted

Okay so I feel like I am always posting on here but I have another question.

 

My doc ran a ttg on February 22nd. Mine was 7 with 4 being normal. I was advised to go gluten free, so I did for a little under a week. But then they called back and said to go back on gluten so I can get a biopsy.

So he did a biopsy on March 13th and my villi structure was normal but I had an increased number of Intraepithelial lymphocytes.

 I went off of gluten until my next appointment on April 5th. I did feel better. Not completely, bu definitely better. My doctor told me that I could have early stage or latent celiac, but that I could eat gluten if I wanted to (I know, what the hell.. I am just as confused as you probably are while reading that)

 

So on April 5th my doctor ran some of the Prometheus lab. He did the Crohns panel and the entire Celiac Panel (even though i told him I had been off of gluten for almost a month...)

 

I just got my results: Crohns tests normal and celiac tests normal (INCLUDING TTG). I do not have a copy of my exact results, but do plan to get them.

 

SO I am curious as to why my ttg went down.The nurse that gave me my results said that it could be from me going off of gluten but she wasn't sure. I have another appointment scheduled may 1st and she said to ask my doc then.

 

My feeling is that I do have early stage celiac and need to stop eating gluten, which I plan on doing. I just want to see if any of you know if my lowered ttg could be from being gluten free for a little while.

 

Is a little under a month of being gluten free enough to lower the TTG back to normal range?

 

Thank you!

Kristin

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Two weeks is generally considered to be the absolute cutoff for gluten free eating not potentially affecting test results (some would say one week)  -- in which case a gluten challenge needs to be done.  I would consider one month far too long for valid results.

 

An increased number of intraepithelial lymphocytes on biopsy is indicative of potential early celiac damage.

 

If you really want a diagnosis you will need to go back on gluten for (I would recommend) six weeks -- since it sounds like you are very early stages -- but if you feel strongly enough that gluten is not for you I would also be supportive of just going gluten free and being done with being messed around by doctors.

nvsmom Community Regular
nvsmom
Posted

It looks like you have celiac disease to me.  Your tTG test was almost double the lab's normal high limit - that's a significantly positive test. As Neroli said, your biopsy showed possible early stages of celiac and who knows, perhaps they didn't even biopsy the most damaged parts - the surface area of the small intestine is about the same as a tennis court and if the villi damage was not uniform, it wouldn't be too hard to miss it.

 

If you were doing a good job on the diet, and your body responded quickly, it is entirely possible that your tTG labs could fall to within normal that quickly. We're all different. Some will continue making autoantibodies for months or years, others will stop as soon as the gluten is gone from their system... you could be one of the lucky ones.

 

If you are starting to feel better on the gluten-free diet, you could consider that further confirmation that you have celiac disease. The only other option you have is to resume eating gluten for a month or so and then retest. If you do retest, you might want to have the doctor include the DGP, EMA and even AGA tests, as well as the total serum IgA test - if you are making yourself eat gluten, you might as well test the whole lot.  Good luck!

GottaSki Mentor
GottaSki
Posted

Okay so I feel like I am always posting on here but I have another question.

 

So he did a biopsy on March 13th and my villi structure was normal but I had an increased number of Intraepithelial lymphocytes.

 

Is a little under a month of being gluten free enough to lower the TTG back to normal range?

 

Never apologize for asking questions -- it is the only way you can figure this out.

 

My thought is these biopsies show just a glimpse of your villi and of the samples taken there was damage that can be attributed to the early stages of Celiac Disease -- it is possible there is more severe damage in places samples were not taken.

 

Maybe.

 

 

Sorry for the colorful answer...distracting myself from the news of the day.  For what it is worth - my gut says celiac disease.

dilettantesteph Collaborator
dilettantesteph
Posted

Look at this reference: Open Original Shared Link

 

It looks like increased lymphocytes indicate celiac disease.  I think that this would be especially the case since you had already started the gluten-free diet.

 

I would say that it is a very good sign that you blood levels were already down after a month.  It would seem to indicate that you are responding well to the diet.

Archived

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

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

  • Member Statistics

    • Total Members
      134,083
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    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...