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

testing update

ironictruth

Recommended Posts

ironictruth Proficient
ironictruth
Posted

There were some folks who asked me for an updatE As they had similar Results.  I'm going to give the most recent update and history first and then the surprising Semi conclusi

I had my endoscopy in April with the celiac center.  it showed merely an increase in IEL, no villi blunting. 

DGP combined assay  was positive on more than one occasion but when separated out was negative including a month after the biopsy. 

My brother is seronegative celiac. 

 At the poor advice of my primary care I started a gluten-free diet a little over two years ago.  I then underwent a six-week gluten challenge with perfect endoscopy.  I went gluten-free after the challenge but admittedly was still going out to eat and Not watching cross-contamination. Several months later due to pain and nausea, they gave me another endoscopy which showed acute dUodenitis, just inflammation, no Villi blunting. 

 All sorts of weird s*** started happening toward the end and after the gluten challenge.  prior to this I have been to the doctor a couple of times for sinus infections and suddenly I found myself Visiting cardiologists, endocrinologist, switching Primary Care docs, getting a new GI.  I was lectured by multiple doctors on the fact that I did not have celiac disease and told that gluten free although Celiac is real, is also a big Fad.  I tried, to no avail, to explain to these doctors that there was definitely something wrong and it wasn't in my head. It either is celiac disease and we're missing it, or there is something else that they need to find.  I had no desire to become part of some gluten-free fad,  I was just trying to find a way to accurately and conclusively come up with a diagnosis for my symptoms so that I can move on with my life. 

 So, after the initial pathology report came back in April showing increase in IEL only,  which is fairly nonspecific, I continueD to feel frustrated but moved on.  at the very good advice of some of the folks on this Celiac Ford, I asked my local GI who can't stand me, to do a capsule endoscopy.  he told me it would not show anything. It did not show anything in the small intestine but it showed gastropathy in the stomach.

 However, and this is where it gets good, 2 days after the pillcam when I didn't have the results yet, I got a call from the Celiac Center. Apparently they had yet to do their interpretation of my biopsy from back in April. it was just the pathologist from the hospital Who had done the initial report. The center recut the sample and found increase in IEL, crypt hyperplasia and some normal Villi and some blunted Villi with a marsh score of 2 through 3A. 

 I have a follow-up with the GI who hates me in the middle of the month and with the Celiac specialist at the end of the month to discuss.

 I  have a lot of questions for the Celiac specialist because of course I am still terrified that we don't have this Answer yet.  but if I'm going to believe anyone, or anyone is going to put my mind at ease, it's going to be him and none of the doctors that I have met here locally.

 in the meantime, over the course of the last 6 months, I got off of all the stupid medications I was on and didn't need and started running.  I figure as long as I can run I know I'm not dying. There are days I feel so bad that I cannot but I can always usually get up within a couple of days and go for a run.  I am training for my first half marathon next month. I know I can do it because I've already done a couple 10 to 13 Mile runs.  And I've run three races, tWo 5 K's And one 10k and placed all three times in my age division!  running has been the best thing I can do for my mind during this time.  I also figured I oughta be doing pretty darn well I actually start feeling good.

 plus the pain in my legs distract me from the pain in my stomach. Unintended bonus! Lol!!!

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Are you kidding?  (Actually, I used different words that were not appropriate to publish).  

I do not have time to really respond, but kudos to you for running.  Heading over to the school to fit band uniforms.  

ironictruth Proficient
ironictruth
Posted
  • Author
30 minutes ago, cyclinglady said:

Are you kidding?  (Actually, I used different words that were not appropriate to publish).  

I do not have time to really respond, but kudos to you for running.  Heading over to the school to fit band uniforms.  

 Yeah, sometimes when I'm running I actually think of you cycling while you Were Anemic and I'm like, "I have got to be able to finish this".

 I should probably get my Ferritin checked again actually. it had dropped from the 70s to 20 and it's been a few months since I had it checked.  I am on iron daily now so that it doesn't drop anymore.

  the Celiac Center immediately Faxed me a report so that I Could see it in writing  because I was in disbelief.

Band uniforms Aye?  I guess I better get to clothing shopping for my first grader soon! Can't believe schools around the corner again.

Gemini Experienced
Gemini
Posted

 Do I understand correctly that you are still unsure on whether you have Celiac Disease?  The Celiac center nailed it, which is great because all those other docs failed you and did what they all do to most people who think they may have it.  Two things........

I love your sense of humor as in how you keep on referring to one of your docs as the"one who hates me".  I've had that experience, unfortunately.  Know how you feel.

Secondly, I love that you ditched your meds and started some serious exercise! Sometimes when you push yourself, everything gets better.  Sure, you'll have your down days but this is all good and I wish you the best of luck with running those half marathons.  You would be surprised at what you can do when you teeter on the brink of anemia. I look back and wonder how I did what I did.  Good for you and I hope it all gets better from here!  :)

ironictruth Proficient
ironictruth
Posted
  • Author

Yeah,  so after being so unsure in the last couple of years about the diagnosis, and being told it is not celiac, I'm still a little unclear.  it is always tricky for them when the TTG is not positive And the EMA is negative.  other things can cause your Villo Blunting. But, in my case I have a sibling with Celiac and also genetic predisposition so it is likely is celiac. I have Dr. Fasano as my Celiac specialist and I have a visit with him at the end of the month. So what he tells me I'm going with. But we have yet to discuss the Pathology that they faxed me the other day.

Yes,  I now absolutely love certified gluten free black bean pasta. chock-full of iron and protein and a great way to carb refuel.  I'm just glad that we caught this fairly early because if I started dropping weight while running I would have to give it up. 

 I will keep everyone posted on the off-chance they diagnose Me with some obscure parasitic disease related to monkeys.  Otherwise I will assume I will become one of the others who posts random questions about which foods from Trader Joe's I am allowed to eat  and if my sunscreen is suspect.

Gemini Experienced
Gemini
Posted
14 minutes ago, ironictruth said:

I will keep everyone posted on the off-chance they diagnose Me with some obscure parasitic disease related to monkeys.  Otherwise I will assume I will become one of the others who posts random questions about which foods from Trader Joe's I am allowed to eat  and if my sunscreen is suspect.

I wouldn't worry about that unless you start to really crave banana's.........:P

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. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.