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

Question About Gastritis

Smarts

Recommended Posts

Smarts Rookie
Smarts
Posted

Okay I've posted a few times and have sort of considered myself diagnosed because of a lifetime's worth of Celiac disease symptoms, positive gene test with DQ2 (despite gastroenterologist telling me it was negative), seeing my 'allegedly' positive capsule endoscopy showing villous atrophy - which the gastroenterologist later verbally retracted as a mistaken diagnosis!!!! So I live in a twilight world where my body (and that of one of my daughter's) seems a lot happier since adopting a gluten free diet - but the BIG SHOT doc (who I don't see anymore) claimed I am anything but Celiac. Now, 9 months on, my own GP, who is sitting on the fence, wants me to see his new in house dietician. I'm guessing if I can convince her, maybe he will be convinced too.

So this is my question, that just occurred to me the other day. About 20 years ago when I was in my early 20's, my health went through about one of my worst episodes. I couldn't keep food down, I was dizzy, brain fog, depressed, migraines, stomach cramps, extreme boring hunger pains, nausea and reflux, +++ - the works. I grew up in UK (I now live in Australia) and i was living in London at the time. My GP (who was not the nicest man, but anyway) finally sent me for a barium meal. The results showed extreme inflammation of the duodenum. I was told that this was the worst case of inflammation that they had seen without the presence of an ulcer. I was sent home with Zantac and a diagnosis of gastritis and told to quit complaining, despite my health not getting any better, and that was that (it's very hard to get heard on the NHS system).

Could inflammation of the duodenum be a sign of villous atrophy? Can I use this as an argument in my defence?

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

I had an UGI series about 6 months after my symptoms started in 2006. My "barium meal" showed prominant gastric folds of unkown significance (probably gastritis). I was told at the time by my primary care physician my UGI was normal. Fast forward to 2008 I had a positive blood test and showed esophagatis, duodenitis and scalloped duodenal folds on my scope. My biopsy was positive. I had a repeat EGD in 2010 due to recurring symptoms and it again showed esophagitis, gastritis, gastric ulcer and duodenitis. Biopsy was negative though this time. About 4 months later I discovered I was getting cc'd from Bob's Red Mill products from the gluten free oats. I can't tolerate gluten free oats at all, but until then never gave the cc thing a consideration. I truely believe that oats cause the same damage internally for me as gluten. So my point is that yes inflammation can be caused by gluten and can be seen with or without villous atrophy (at least in my case).

Smarts Rookie
Smarts
Posted
  • Author

I had an UGI series about 6 months after my symptoms started in 2006. My "barium meal" showed prominant gastric folds of unkown significance (probably gastritis). I was told at the time by my primary care physician my UGI was normal. So my point is that yes inflammation can be caused by gluten and can be seen with or without villous atrophy (at least in my case).

Thankyou Roda - this was really helpful and insightful for me.

I went to see my GP's in house dietician today. I was really not looking forward to it - I couldn't handle having somebody looking for more things wrong with me and not listening to me, so I wrote a long report of my entire family history and a detailed account about how the gastroenterologist had taken me for such a ride. Didn't need to worry, she didn't even have to look at my report, she was so open to hearing what is going on. Finally that gastro has sent all my test results to my GP, so they are on file (finally). Dietician's conclusion is that as far as she is concerned I have a big gluten problem and so has my daughter. She also accepts that I have a problem with corn, and pointed out that my hiatus hernia is probably giving me issues too. (The gastro-enterologist dismissed his findings of reflux and a hiatus hernia as irrelevant). I do still get a bit burpy after drinking coffee, wine and eating chocolate! What she would like to know is if what I have is coeliac disease, pre-coeliac disease or gluten intolerance. So she wants me to get a second opinion from another gastro and she recommended a lady doctor who is interested in coeliac disease, is situated locally and is quite holistic in her approach. The dietician said that if I enjoy my coffee, wine and chocolate and the burps don't bother me too much, just enjoy away, in moderation!! The dietician feels that my lifelong issues of iron deficiency and also the gastritis are signs of something serious going on. She can't believe doctors have dismissed my problems for so long. So I will make an appointment with the lady gastro.

Incidentally, my biggest issue was that the gastroenterologist had shown me villous atrophy on my capsule endoscopy back in May. He wouldn't give anyone the report and when my GP phoned him he had said that he had made a mistake and that there was nothing there. So with bated breath I read the capsule endoscopy report that is on my file (for the first time) - this is how it reads (not including the findings etc.)

"INDICATION - Suspected occult blood loss

CONCLUSION - No source of occult blood loss seen in small bowel. No evidence of lymphoma or carcinoma. Mucosal changes upper early duodenum".

As the dietician said - what are those mucosal changes?

In the findings the doctors refers to the mucosal changes and says that they will need to be correlated histologically. Does anyone know what that means?

Roda Rising Star
Roda
Posted

Thankyou Roda - this was really helpful and insightful for me.

"INDICATION - Suspected occult blood loss

CONCLUSION - No source of occult blood loss seen in small bowel. No evidence of lymphoma or carcinoma. Mucosal changes upper early duodenum".

As the dietician said - what are those mucosal changes?

In the findings the doctors refers to the mucosal changes and says that they will need to be correlated histologically. Does anyone know what that means?

Your welcome! To correlate histologically means that they need to look at the tissue at the cellular level under a microscope, I think.

Smarts Rookie
Smarts
Posted
  • Author
https://www.celiac.com/public/style_emoticons/default/rolleyes.gif

Your welcome! To correlate histologically means that they need to look at the tissue at the cellular level under a microscope, I think.

Thanks - well obviously he never bothered to correlate it histologically then!! :rolleyes: So moving on to the next doctor... next installment to follow...

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks - well obviously he never bothered to correlate it histologically then!! :rolleyes: So moving on to the next doctor... next installment to follow...

You mention you have been gluten free for 9 months, if I read that right, please be aware that you would need to do a gluten challenge for 2 to 3 months to redamage yourself before testing can have any chance of being accurate.

Smarts Rookie
Smarts
Posted
  • Author

You mention you have been gluten free for 9 months, if I read that right, please be aware that you would need to do a gluten challenge for 2 to 3 months to redamage yourself before testing can have any chance of being accurate.

:( Yes I'm aware of that. The wonderful dietician did say that if this new doctor wants me to do the gluten challenge, then she will support me and advise me every step of the way. It's taken me 9 months to decide to go back to mainstream medics, if not for me, then I feel that I have to do this for my daughters. I was just getting on with my life and not eating any gluten, but I get so many questions from family and friends, and there are plenty of cynics amongst them! I just want us to be believed.

I was driving my daughter and her friends the other day. One of them piped up in a condescending voice "so does she have a 'real' problem with gluten or doesn't she?". I wanted to give that 10 yr old madam a piece of my mind, but the reality is that this is what we will have to go through until somebody with lots of letters after their name declares us one thing or another.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

I was driving my daughter and her friends the other day. One of them piped up in a condescending voice "so does she have a 'real' problem with gluten or doesn't she?". I wanted to give that 10 yr old madam a piece of my mind, but the reality is that this is what we will have to go through until somebody with lots of letters after their name declares us one thing or another.

I'm sure the 10 year old is hearing this from somewhere. Most of the time kids pick things up at home. <_< Hope whatever you decide I hope it goes well and you get the answers you need. Just know that you don't have anything to "prove" to anyone. The only one you need to be comfortable with is yourself.

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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.