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

Endoscopy results

Paula Davis

Recommended Posts

Paula Davis Rookie
Paula Davis
Posted

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?

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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:

Open Original Shared Link

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 Experienced
Victoria1234
Posted

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 Proficient
ironictruth
Posted

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 Experienced
plumbago
Posted
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 Rookie
Paula Davis
Posted
  • Author

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

 

Victoria5289 Apprentice
Victoria5289
Posted
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.

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

Celiac.com Sponsor (A8-M):


Paula Davis Rookie
Paula Davis
Posted
  • Author

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 Proficient
ironictruth
Posted

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

plumbago Experienced
plumbago
Posted
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 Rookie
Paula Davis
Posted
  • Author

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. 

  • 2 weeks later...
Paula Davis Rookie
Paula Davis
Posted
  • Author

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 Grand Master
cyclinglady
Posted
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:

Open Original Shared Link

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 Rookie
Paula Davis
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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 Rookie
Paula Davis
Posted
  • Author

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

  • 4 weeks later...
Paula Davis Rookie
Paula Davis
Posted
  • Author

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 Veteran
squirmingitch
Posted

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

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 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,695
    • Most Online (within 30 mins)
      7,748
    Aanhmcbride
    Newest Member
    Aanhmcbride
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.