Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,870
    • Most Online (within 30 mins)
      7,748
    KRISTENE
    Newest Member
    KRISTENE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.