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

Had endoscopy today and extremely worried

Sabaarya
 Share

Recommended Posts

Sabaarya Community Regular
Sabaarya
Posted

Hi everyone,

I’ve had endoscopy this morning 16 month after initial diagnose and have been on gluten-free diet for a year and now I’m extremely worried what if it didn’t heal. I did ask doctor how was everything,he said that we need to wait for biopsy results. I’m kind of concerned that he didn’t mention anything about what did he see. I checked my last year pathology and it did state that duodenum mucosa shows partial blunting/atrophy with intraepithelial lypmphosities  and it’s suggestive with early or partially treated celiac Marsh 3A. Doctor said we have to wait for biopsy results because last year everything looked normal to him but it turned out celiac. Does everyone with Celiac usually wait for biopsy results even if it’s their repeat endoscopy after initial diagnose or do usually doctors say that everything looks normal and healed? My doctor said no worries let’s just wait for biopsies…

Thank you

Saba

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

Whether the doctor can see celiac damage or not during the endoscopy mainly depends on the magnification available with their endoscope.  My doctor was at a university with fancy equipment so she could see the villi.  Many doctors don’t have access to such equipment.

Sabaarya Community Regular
Sabaarya
Posted
  • Author

Interesting. My procedure was at Beverly Hills medical center I think they should have access to the newest equipments. I was also told when the damage is mild they won’t be able to differentiate whether it’s celiac or inflammation. I don’t know. Will see. Have you had repeat endoscopy after your initial diagnose?

RMJ Mentor
RMJ
Posted
28 minutes ago, Sabaarya said:

Interesting. My procedure was at Beverly Hills medical center I think they should have access to the newest equipments. I was also told when the damage is mild they won’t be able to differentiate whether it’s celiac or inflammation. I don’t know. Will see. Have you had repeat endoscopy after your initial diagnose?

I never had the initial endoscopy for reasons unrelated to celiac. I have a bleeding disorder and need to take medication prior to biopsies. I had a hematologist who didn’t believe I could have celiac without digestive symptoms and she wouldn’t prescribe the medication. My endoscopy was after I had a new hematologist and needed a colonoscopy anyway.  It was 4 years after I started a gluten free diet, but one of my antibody levels was still positive.  I still had “patchy mild increase in intraepitheliallymphocytes and focal mild villous blunting” consistent with partially treated celiac disease.  My antibody levels are now normal but my gastroenterologist hasn’t suggested a repeat endoscopy.  

Have you had repeat antibody tests?

Sabaarya Community Regular
Sabaarya
Posted
  • Author

My antibody tests were negative, I got diagnosed with positive biopsy. But I was checked only for 2 antibodies which were TISSUE TRANSGLUTAMINASE AB, IGA and IMMUNOGLOBULIN A. I know there is more l but I was checked for those 2 and negative, I believe thats the classic antibodies for celiac but anyways they were negative…

RMJ Mentor
RMJ
Posted
10 minutes ago, Sabaarya said:

My antibody tests were negative, I got diagnosed with positive biopsy. But I was checked only for 2 antibodies which were TISSUE TRANSGLUTAMINASE AB, IGA and IMMUNOGLOBULIN A. I know there is more l but I was checked for those 2 and negative, I believe thats the classic antibodies for celiac but anyways they were negative…

Immunoglogulin A is total IgA, and only run as a control to make sure you’re not deficient in IgA. If you were, the other IgA tests might not be accurate. So you were only checked for one celiac-specific antibody.  I was checked for 4 and they all were positive.  Deamidated gliadin peptide IgA is the one that took years to normalize.

Sabaarya Community Regular
Sabaarya
Posted
  • Author
1 hour ago, RMJ said:

Immunoglogulin A is total IgA, and only run as a control to make sure you’re not deficient in IgA. If you were, the other IgA tests might not be accurate. So you were only checked for one celiac-specific antibody.  I was checked for 4 and they all were positive.  Deamidated gliadin peptide IgA is the one that took years to normalize.

I’ll have my doctor to order those tests for me. After I got diagnosed I literally made my mom to have celiac panel test and she did it twice and every time her Gliadin IGA was positive,but other antibodies like andImmunoglobulin A Ab and tTG IgA were negative. I do tell her mom you have celiac and I probably got that from you but she refuses follow gluten-free diet,she says it doesn’t bother me,my blood levels are all normal my vitamins are normal and I’m 65 I don’t need it. I can’t understand her approach at all! So do you think she might have celiac with positive Gliadin IGA antibody? I had endoscopy last year because of anemia and occult blood in stool. I always had gastrities and acid reflux so it was not a surprise for me,but yeah that was how I diagnosed with celiac. After endoscopy last year he said you have red spots in your duodenum and he thought it was duodenitis,he actually was surprised that it turned out to be celiac. But my pathology stated that mucosa shows early celiac sprue. I really hope it got a lil bit better,my symptoms got improved I hope duodenum got better too…

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

Celiac.com Sponsor (A8-M):


yuluyouyue Contributor
yuluyouyue
Posted

It takes sometimes more than a year to heal so no need to panic if it turns out you are not there yet. Also, what  exactly do you mean by gliadin IGA? I thoguht that is supposed to be positive in order for antibody test to be valid and it is not a sign of celiac on its own. If so and if your Mom feels well there is really no need to put her through more testing. I also made my Mom get tested. Here we only do total IGA, which I suspect you mean by gliadin IGA, and ttg IGA. Her ttg was 0 point something, she has no symptoms and she is healthy. Of course, she could also request a full panel but I don't think there is any need. Let's not spread health anxiety to people who don't have it. Anyway, I think it's my Dad who has it but he will not do anything about it. He is an adult and it is his choice. 

17 hours ago, Sabaarya said:

I’ll have my doctor to order those tests for me. After I got diagnosed I literally made my mom to have celiac panel test and she did it twice and every time her Gliadin IGA was positive,but other antibodies like andImmunoglobulin A Ab and tTG IgA were negative. I do tell her mom you have celiac and I probably got that from you but she refuses follow gluten-free diet,she says it doesn’t bother me,my blood levels are all normal my vitamins are normal and I’m 65 I don’t need it. I can’t understand her approach at all! So do you think she might have celiac with positive Gliadin IGA antibody? I had endoscopy last year because of anemia and occult blood in stool. I always had gastrities and acid reflux so it was not a surprise for me,but yeah that was how I diagnosed with celiac. After endoscopy last year he said you have red spots in your duodenum and he thought it was duodenitis,he actually was surprised that it turned out to be celiac. But my pathology stated that mucosa shows early celiac sprue. I really hope it got a lil bit better,my symptoms got improved I hope duodenum got better too…

Sabaarya Community Regular
Sabaarya
Posted
  • Author

Hi:). Well I was told that my celiac is so mild and healing should be in 3-6 months. I don’t know. Anyways I’m worried. What about you? Have you had repeat endoscopy after initial diagnose?

yuluyouyue Contributor
yuluyouyue
Posted
13 minutes ago, Sabaarya said:

Hi:). Well I was told that my celiac is so mild and healing should be in 3-6 months. I don’t know. Anyways I’m worried. What about you? Have you had repeat endoscopy after initial diagnose?

No I haven't. I will soon as it has been 2 years,  but I am not in a hurry as I don't think there is anything more I could do even if it hasnt healed completely yet. I mean I am already very careful with food and try to live healthy. I check my antibodies every 6 months. Always fine. I don't have any symptoms either.  So I don't want to make myself worry with a possible less than perfect endoscopy result just yet. 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
1 hour ago, yuluyouyue said:

No I haven't. I will soon as it has been 2 years,  but I am not in a hurry as I don't think there is anything more I could do even if it hasnt healed completely yet. I mean I am already very careful with food and try to live healthy. I check my antibodies every 6 months. Always fine. I don't have any symptoms either.  So I don't want to make myself worry with a possible less than perfect endoscopy result just yet. 

Just received my pathology report and it states that there is no evidence of celiac sprue,no blunting or atrophy and no intraepithelial lymphocytes . Yaaaaaayyyyy:))) So happy

RMJ Mentor
RMJ
Posted
1 hour ago, Sabaarya said:

Just received my pathology report and it states that there is no evidence of celiac sprue,no blunting or atrophy and no intraepithelial lymphocytes . Yaaaaaayyyyy:))) So happy

Congratulations!  You’re doing the gluten free diet right!  

icelandgirl Proficient
icelandgirl
Posted
20 hours ago, Sabaarya said:

Just received my pathology report and it states that there is no evidence of celiac sprue,no blunting or atrophy and no intraepithelial lymphocytes . Yaaaaaayyyyy:))) So happy

Congratulations and great job on your gluten free diet!!  It's so nice to hear such good news, isn't it?  Keep up the good work!

yuluyouyue Contributor
yuluyouyue
Posted
On 12/21/2022 at 6:12 AM, Sabaarya said:

I’ll have my doctor to order those tests for me. After I got diagnosed I literally made my mom to have celiac panel test and she did it twice and every time her Gliadin IGA was positive,but other antibodies like andImmunoglobulin A Ab and tTG IgA were negative. I do tell her mom you have celiac and I probably got that from you but she refuses follow gluten-free diet,she says it doesn’t bother me,my blood levels are all normal my vitamins are normal and I’m 65 I don’t need it. I can’t understand her approach at all! So do you think she might have celiac with positive Gliadin IGA antibody? I had endoscopy last year because of anemia and occult blood in stool. I always had gastrities and acid reflux so it was not a surprise for me,but yeah that was how I diagnosed with celiac. After endoscopy last year he said you have red spots in your duodenum and he thought it was duodenitis,he actually was surprised that it turned out to be celiac. But my pathology stated that mucosa shows early celiac sprue. I really hope it got a lil bit better,my symptoms got improved I hope duodenum got better too…

Sabaaraya, did you have to do a colonoscopy to check the cause of occult bleeding or did they explain it with gastritis? 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
2 hours ago, yuluyouyue said:

Sabaaraya, did you have to do a colonoscopy to check the cause of occult bleeding or did they explain it with gastritis? 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
2 hours ago, yuluyouyue said:

Sabaaraya, did you have to do a colonoscopy to check the cause of occult bleeding or did they explain it with gastritis? 

Yes I had colonoscopy. They always make you have colonoscopy and endoscopy if there is occult blood,especially colonoscopy.

 

Sabaarya Community Regular
Sabaarya
Posted
  • Author
11 minutes ago, Sabaarya said:

Yes I had colonoscopy. They always make you have colonoscopy and endoscopy if there is occult blood,especially colonoscopy.

 

And my doctor said that most probably it was false positive cause he couldn’t find anything,but it could be gastritis and even celiac

Darren Apprentice
Darren
Posted
On 12/22/2022 at 3:18 PM, icelandgirl said:

Congratulations and great job on your gluten free diet!!  It's so nice to hear such good news, isn't it?  Keep up the good work!

Good news! Stay strict with the diet and keep doing th 6 month bloodwork routine until you feel comfortable going to annual. All good well done. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. Scott Adams
      - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will...
    2. Jacki Espo
      - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure.
    3. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

      Hi Tiffany. Thank you for writing your dituation and circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines. Way back when I was in my 2...
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,953
    • Most Online (within 30 mins)
      7,748
    ramonaja
    Newest Member
    ramonaja
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.