Had endoscopy today and extremely worried

[Sabaarya]

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

[RMJ]

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]

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]

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]

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]

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]

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…

[yuluyouyue]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.