Question About Gastritis

[Smarts]

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?

[Roda]

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]

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]

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]

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!! So moving on to the next doctor... next installment to follow...

[ravenwoodglass]

Thanks - well obviously he never bothered to correlate it histologically then!! 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]

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.

[Roda]

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.