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Can You "see Celiac" Via Endoscopy?

JenPen

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JenPen Newbie
JenPen
Posted

Hello-

I'd like to let everyone know that I have really appreciated all the info I have found so far in this forum. Thanks to everyone for all the help you give to the members here!

Some background on my questions:

I had an endoscopy on Monday. My husband and I were told that the doctor saw "slightly flattened villi" and that this looked like Celiac Disease. When the biopsy results came in yesterday, we were told the bowel biopsies were normal so it is not Celiac. Instead they said the stomach biopsies showed reactive gastropathy. When I asked the nurse about what the doctor originally told me, I couldn't get a straight answer. My questions are this:

1) Is it possible to "see" flattened villi via endoscopy?

2) If it wasn't damage, then what WAS the doctor seeing?

3) Has anyone else had this happen?

4) Could the stomach "irritation" aka gastropathy, be caused by gluten? I'd rather not take the drugs they prescribed for it if I don't have to

If it helps, here is a little background:

About January I started having diarrhea, abdominal pain, "bubbly intestines" etc and began waking up multiple times every night. I was tired all the time and sometimes weak

The beginning of April I tested negative for TTG IgA and my total IgA was normal. No other Celiac tests were performed

My brother had high TTG IgA scores and an inconclusive biopsy so has not been diagnosed as Celiac. He has been on a gluten-free diet for about a year and a half and the response has been incredible

I received my Enterolab results today (didn't think the GI doc was going to do an endoscopy):

21 Antigliadin IgA

20 Antitissue Transglutminase IgA

HLA-DQ 2,3 (Subtype 2,7)

Thanks in advance 8^)

Jennifer

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Guest j_mommy
Guest j_mommy
Posted

Endo's are the gold standard for diagnosing Celiac...they look for villi damage by doing a biopsy.

Your symptoms sound correct for celiac.

About the meds....if you have celiac then the treatment is teh gluten-free diet. Make sure any meds the prescribe you are gluten free...they will not automatically prescribe you gluten-free meds...you have to do the checking!

Did they take biopsy's?

ravenwoodglass Mentor
ravenwoodglass
Posted
Hello-

I'd like to let everyone know that I have really appreciated all the info I have found so far in this forum. Thanks to everyone for all the help you give to the members here!

Some background on my questions:

I had an endoscopy on Monday. My husband and I were told that the doctor saw "slightly flattened villi" and that this looked like Celiac Disease. When the biopsy results came in yesterday, we were told the bowel biopsies were normal so it is not Celiac. Instead they said the stomach biopsies showed reactive gastropathy. When I asked the nurse about what the doctor originally told me, I couldn't get a straight answer. My questions are this:

1) Is it possible to "see" flattened villi via endoscopy?

2) If it wasn't damage, then what WAS the doctor seeing?

3) Has anyone else had this happen?

4) Could the stomach "irritation" aka gastropathy, be caused by gluten? I'd rather not take the drugs they prescribed for it if I don't have to

If it helps, here is a little background:

About January I started having diarrhea, abdominal pain, "bubbly intestines" etc and began waking up multiple times every night. I was tired all the time and sometimes weak

The beginning of April I tested negative for TTG IgA and my total IgA was normal. No other Celiac tests were performed

My brother had high TTG IgA scores and an inconclusive biopsy so has not been diagnosed as Celiac. He has been on a gluten-free diet for about a year and a half and the response has been incredible

I received my Enterolab results today (didn't think the GI doc was going to do an endoscopy):

21 Antigliadin IgA

20 Antitissue Transglutminase IgA

HLA-DQ 2,3 (Subtype 2,7)

Thanks in advance 8^)

Jennifer

Your results from enterolab show a clear antibody reaction to gluten plus a celiac gene. The term reactive gastropathy means that your GI system is reacting to something that is destroying it. In light of the fact that he was able to see visible damage I would go under the assumption that the biopsy was a false negative. With your enterolab results, the flattened villi and a brother who has responded well to the diet now is the time for you to get on it. I would give the diet a good go before I started the meds, perhaps you could use pepto for stomach discomfort until it ends. Going on the gluten free diet is not going to effect the results of any other testing you need to have done if it does not resolve your problems and you don't need your doctors permission to try it.

JenPen Newbie
JenPen
Posted
  • Author

Hi j_mommy,

Thanks for the tip on checking the meds for gluten! They did take a biopsy in the small bowel. I forgot to ask how many though. It's on my list of follow-up questions for when I see the doctor again in December.

Jennifer

JenPen Newbie
JenPen
Posted
  • Author
Your results from enterolab show a clear antibody reaction to gluten plus a celiac gene. The term reactive gastropathy means that your GI system is reacting to something that is destroying it. In light of the fact that he was able to see visible damage I would go under the assumption that the biopsy was a false negative. With your enterolab results, the flattened villi and a brother who has responded well to the diet now is the time for you to get on it. I would give the diet a good go before I started the meds, perhaps you could use pepto for stomach discomfort until it ends. Going on the gluten free diet is not going to effect the results of any other testing you need to have done if it does not resolve your problems and you don't need your doctors permission to try it.

Hello-

I'm with you on the meds! In this case, I kind of feel like they're trying to fix a symptom instead of the cause. It's nice to hear someone else thinks similarly.

I had decided to base my next steps on the Enterolab results, so I've already started back on the gluten free diet. I've actually tried it several times. The first two times I became even sicker. Once I realized that I couldn't tolerate soy or dairy, I tried again sans gluten-free snacks that had soy flour or dairy. That time things worked out much better. I actually slept straight through a couple of nights! I think it's the soy that really gets my digestive tract (enterolab came back 52 soy and 18 casein). Unfortunately I only had a couple of weeks to try the diet before going back on wheat because I didn't want to mess up any testing the GI doc would do

Anyway, thanks for basically verifying my impressions on this!

Jennifer

Guest j_mommy
Guest j_mommy
Posted

JenPen,

Just wanted to let you know that for some it takes awhile to see results on the diet! Give it time to work.

Also you shouldn't have to wait for biopsy results until dec.....they usually have them back within a week....call and get your results!!!!!

Good Luck, Jess

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      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
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    • cristiana
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      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
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      By CC90 · Posted

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    • Wheatwacked
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      By Wheatwacked · Posted

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