Endoscopy results

[Paula Davis]

In March I had severe stomach pain (my only symptom), so much so that I ended up in ER. I had an endoscopy (EGD) a few weeks later. When I called for the results, the nurse said I had mild inflammation in my esophagus and stomach and that my duodenum was normal. She said it indicated gluten intolerance, but there was no damage to my villi. I told her I still did not feel good, so she suggested either Prilosec once a day or a gluten free diet--each for 3 months. I am opting for the gluten free diet.

I requested a copy of the results, which seriously confused me after what the nurse said. The radiologist's final diagnosis said chronic gastritis and chronic duodenitis. It also said I had "partial villous atrophy, compatible with partially treated celiac sprue". (I did a gluten free diet last fall for two months because of an allergy test I had done which suggested gluten sensitivity. My only symptom at that time was a runny nose. When the gluten free diet didn't relieve the runny nose, I gave up on the diet.) Also, handwritten on the results was "could always do a blood test for celiac".

This sounds kind of funny to me, and I'm not sure what to think. Could I really have celiac that they're just not willing to pursue? Or am I just reading a lot into this?

[cyclinglady]

What? It looks like your GI does not want to diagnose you with celiac disease.  Not saying that you have celiac disease, but I suggest asking/insisting on a full celiac panel.  Learn more about the specific tests:

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So glad that you have copies of the pathologist's report!  You may have to consult with another GI. 

Some GI's are old school.  They picture a malnourished kid with a swollen abdomen.  Celiac disease can be systemic, have intestinal symptoms or not have any symptoms at all!  There are over 300 symptoms alone attributed to celiac disease.  Unfortunately they tend to overlap with other illnesses.  But the celiac blood panel helps make a diagnosis.  Intestinal villi damage can result from other things, but excluding celiac disease is an easy way to go.  

Do not go gluten free until all testing is complete.  With out gluten in your diet, the tests will not work.  I think you probably had just some partial damage found because you had healed somewhat on that previous gluten free diet.  

BTW.....you are not reading too much into this.  Today, you have to be your best health advocate.  Doctors are too busy and a few are most likely incompetent.  If you do look for another GI, find one who has some celiac patients.  

Good luck and keep us posted!  

[Victoria1234]

some celiac patients.  

or rather, has some patience with celiacs!

good luck! So glad you were able to read those results yourself. I recall 10 years ago being tested for lupus and ra and the doc saying we might follow up in aa few months looking at other issues.... and then he left the practice and never followed up. Always wondered if celiac would have shown up back then with the pain, etc symptoms I was having.

[ironictruth]

Get a second opinion if you need to. They actually have to keep the biopsy slides. So if you can find a celiac center that would be willing to look, you can have them sent. 

First, you might want to do the bloodwork for antibodies (TTG, DGP, EMA and overall IGA). Possibly, if the genetic testing is covered by insurance, do that as well. 

[plumbago]

1 hour ago, ironictruth said:

Get a second opinion if you need to. They actually have to keep the biopsy slides. So if you can find a celiac center that would be willing to look, you can have them sent. 

 

Usually the order of a celiac workup is blood tests then an endoscopy. You've had the endoscopy done, so might as well have the images sent elsewhere for another opinion. Did you get a copy of the report? I would get the report - a report includes images, procedure notes, and pathology report.

[Paula Davis]

Thank you all for the good advice!  I appreciate it!

 

[Victoria5289]

On 5/15/2017 at 1:51 PM, Paula Davis said:

In March I had severe stomach pain (my only symptom), so much so that I ended up in ER. I had an endoscopy (EGD) a few weeks later. When I called for the results, the nurse said I had mild inflammation in my esophagus and stomach and that my duodenum was normal. She said it indicated gluten intolerance, but there was no damage to my villi. I told her I still did not feel good, so she suggested either Prilosec once a day or a gluten free diet--each for 3 months. I am opting for the gluten free diet.

I requested a copy of the results, which seriously confused me after what the nurse said. The radiologist's final diagnosis said chronic gastritis and chronic duodenitis. It also said I had "partial villous atrophy, compatible with partially treated celiac sprue". (I did a gluten free diet last fall for two months because of an allergy test I had done which suggested gluten sensitivity. My only symptom at that time was a runny nose. When the gluten free diet didn't relieve the runny nose, I gave up on the diet.) Also, handwritten on the results was "could always do a blood test for celiac".

This sounds kind of funny to me, and I'm not sure what to think. Could I really have celiac that they're just not willing to pursue? Or am I just reading a lot into this?

Sounds like the nurse knew what this was you have the best team helping you lucky. It took over a year for me.

[Paula Davis]

I have an order for bloodwork being sent to me by the doctor's office.  I was off gluten for about a week and a half after my endoscopy, but when I requested the blood test on Friday, I went back on gluten.  How long is long enough to be back on gluten for the blood test, since I was only off of it for a week and a half?

[ironictruth]

You should be fine as long as you were eating it prior to that 10 days. 

[plumbago]

20 hours ago, Paula Davis said:

I have an order for bloodwork being sent to me by the doctor's office.  I was off gluten for about a week and a half after my endoscopy, but when I requested the blood test on Friday, I went back on gluten.  How long is long enough to be back on gluten for the blood test, since I was only off of it for a week and a half?

You can always check to see how long the lab order lasts, if you'd like to continue eating gluten longer.

[Paula Davis]

I really don't prefer to eat gluten longer.  Every time I eat it, I think, "I'm destroying my villi with every bite".  I'd like to eat it as a little as possible before the blood test.  I received the order for the test in the mail today, so I can that at any time now. 

[Paula Davis]

So my test results came back negative. I do NOT have celiac disease. Aside from about a week and a half of eating gluten before my blood test, I have been gluten free for about a month. It will be two weeks on Saturday since I had gluten.  How long does it take to become pain free?  Last Thursday, I had what I would call an "attack" of very uncomfortable pain all day from morning until night. Around 11:00 it went away.  It was much like my original one on March 5th.  And why would I have something like that happen after being off of gluten?

[cyclinglady]

32 minutes ago, Paula Davis said:

So my test results came back negative. I do NOT have celiac disease. Aside from about a week and a half of eating gluten before my blood test, I have been gluten free for about a month. It will be two weeks on Saturday since I had gluten.  How long does it take to become pain free?  Last Thursday, I had what I would call an "attack" of very uncomfortable pain all day from morning until night. Around 11:00 it went away.  It was much like my original one on March 5th.  And why would I have something like that happen after being off of gluten?

Why would you say you do not have celiac disease?  Did your doctor tell you this?  I ask because 10% of celiacs are seronegative meaning they produce no antibodies to gluten.  You had villi damage, right?  And then the tests.  Did you get a full panel?  TTG, DGP, EMA?  I personally test positive to only one (DGP IgA) on the complete panel.  If my doctor had not ordered the entire panel, I would not have received a firm diagnosis. I am concerned that you had been gluten free for a week and a half prior to the blood test.  celiac disease experts have said that antibodies in some could come down in as little as two weeks (google it).  

What is the plan?  Did your GI recommend a gluten-free diet for six months?  If symptoms resolve then, he might give you a celiac disease diagnosis?  If not, what has damaged your intestinal villi?  Other things can damage villi:

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Finally, assuming you have celiac disease or Non-celiac Gluten Intolerance, expect healing to take months or YEARS to heal.  One month is nothing.....really....in terms of healing.  Remember, celiac disease is autoimmune.  Gluten just happens to be the trigger.  One tiny exposure can set off an autoimmune flare up (antibodies go crazy) and that (depending on the person) can last for weeks or months. That is not counting the actual damage that can occur beyond the gut.    Newbies make mistakes too.   The diet has a steep learning curve.  

I just read some information about celiac disease and NCGI.  Some folks who have villi damage can have or might not have severe GI symptoms.  Others who have suspected NCGI have severe GI symptoms, but no intestinal damage.  The problem is that that researchers do not have concrete answers for this.   There is so much to learn about the GI tract.  

I hope you figure it out.  

[Paula Davis]

Thank you for the response.

Yes, the doctor's office (my GP) said that I do not have it. I had the HLA-DA2&8, TTG IGA AB, Anti-Gliadin IgA and Endomysial IgA--all negative. They are saying gluten intolerance. The plan is to do a gluten free diet for 3 months then add things gradually, but I doubt I will go back to gluten. Every time I think about eating it, I think about how it could damage my villi.

So, are you saying that the villous atrophy is what is causing the stomach pain and that it will have to heal for the pain to go away?  That's good to know. The gastroenterologist's nurse told me that I "don't have damage", even though my report said partial villous atrophy.  Hmmmm....

This is all very frustrating for me, but I guess ultimately, if I stay on the gluten free diet, it won't matter if I have celiac disease or not. If I behave as if I have it, then the diagnosis is secondary.

[cyclinglady]

I am sorry that your case is not clear.  I hope the diet helps, if there is not improvement, find out the cause of your villi damage (like Crohn's).   A follow-up endoscopy would be prudent.  celiac disease can affect the stomach...it can affect any area of the body.  

Personally, I would seek a second opinion even if I had to pay cash.  

[Paula Davis]

If I don't get satisfactory answers at my appointment next week, I will probably get a second opinion. 

[Paula Davis]

Today I had a second opinion/consultation with a different gastroenterologist.  This was a very positive appointment. He was confused about the answers I got from the previous doctor's office.  We started from the beginning, and he looked at the results from my endoscopy.  He believes I have two different things going on. He believes my stomach pains are caused by spasms and has prescribed a medicine for me.  Also, he assured me that it is NOT definitive that I don't have celiac. With the partial villous atrophy that is present, he believes a continued gluten free diet and another scope in October will be very helpful in in determining if I have it.  Thanks to several of you for encouraging me to keep on this.

[squirmingitch]

Thanks for updating us! I'm so glad you've finally gotten a doc who seems to be paying attention.