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

Can Endoscopy Miss Celiac?

klo289

Recommended Posts

klo289 Newbie
klo289
Posted

I am currently diagnosed as having IBS. I saw an interview with a celiac a few months back and it struck up an interest in me. I have some of the symptoms and have always thought that IBS seemed like a blanket diagnosis but felt like there had to be something more to link all of my other symptoms together. I did have an endoscopy about 5 years ago, but the doctor did not say anything about villi or celiac. My stomach was inflamed due to h-pylori bacteria and a biopsy was taken. I was also told that I have a hiatal hernia and acid reflux. I was treated for that and when many of my symptoms did not improve, I was told that I also had IBS. Is it possible that the doctor did not test for celiac or that it was missed due to the bacteria? I am considering calling my doctor to ask about being tested, but don't want him to think I'm crazy since I've had endoscopy before.

My symptoms include: diarrhea, constipation, bloating, extremely gassy, headaches, acid reflux, depression, lathargic, generally not "feeling well", asthma, and skin rashes that have been labeled as eczema but do not respond to the many ointments and creams that have been prescribed. I also had excessive bleeding during menstrual periods (for about 2-3 weeks out of the month) until I had an ablation to remove the lining of my uterus.

I also have rectal bleeding during most bm. My GI did not find any hemmorhoids but did find an anal fissure. They treated me for that and although I usually do not have extreme pain from it any longer, I still bleed frequently. They did do a flexible sigmoidoscopy but didn't find anything.

I don't have weight loss but have struggled with losing weight due to extreme hunger. I often feel the need to eat constantly...it is usually just one food that I keep going back for, like breads or other carbs...it is like an uncontrollable urge at times. In reading and researching online, I have found that some celiacs have struggled with this.

My youngest daughter has most of the same symptoms as me. She has even complained many times about her stomach hurting after eating small certain foods such as cereal or sandwiches.

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

Celiac.com Sponsor (A8-M):


Looking for answers Contributor
Looking for answers
Posted

They call endoscopies the "gold standard" of diagnosis, but that doesn't mean something hasn't developed since then or that you have non-celiac gluten intolerance. Also, h-pylori can cause many of these symptoms...the bacteria affects everyone differently, probably based on your immune system. I have all of the same symptoms you describe and I also have hpylori, hiatal hernia and gastristis. I also have two non celiac gluten intolerance genes.

I'm currently working with a holitic doctor to get rid of the bacteria...it does a lot more harm than the Western doctors let on.

klo289 Newbie
klo289
Posted
  • Author

They call endoscopies the "gold standard" of diagnosis, but that doesn't mean something hasn't developed since then or that you have non-celiac gluten intolerance. Also, h-pylori can cause many of these symptoms...the bacteria affects everyone differently, probably based on your immune system. I have all of the same symptoms you describe and I also have hpylori, hiatal hernia and gastristis. I also have two non celiac gluten intolerance genes.

I'm currently working with a holitic doctor to get rid of the bacteria...it does a lot more harm than the Western doctors let on.

I was tested after treatment for hpylori and they said that it was gone. I am not sure if they even checked for celiac when the endoscopy was done....I'm not sure if it is standard procedure to screen for that. I called my GI today and my endoscopy was in 2004. I am going to pick up copies of the results today so maybe it will say on there if they checked for celiac.

nora-n Rookie
nora-n
Posted

yes it is quite possible they did not check for celiac.

I ahve read postings by others, someone very symptomatic but on steroids because of symptoms, had villous blunting, and the doctors did not notice what that meant. She read her biopsy results a couple of years later and ntoiced the villous blunting and said, hey, that's celiac. I think she wven had gon gluten free all by herself after the biopsy.

Yes, sometimes they do not look for celiac or they read the report and if it says villous blunting they do not make the connection.....even increased intraepithelial lymphocytes means celiac but they often do not report them or count them, or make the connection.

(steroids cause normal biopsies even in severe celiac)

jerseyangel Proficient
jerseyangel
Posted

I was tested after treatment for hpylori and they said that it was gone. I am not sure if they even checked for celiac when the endoscopy was done....I'm not sure if it is standard procedure to screen for that. I called my GI today and my endoscopy was in 2004. I am going to pick up copies of the results today so maybe it will say on there if they checked for celiac.

See if they took samples of the lining of your small intestine and biopsied them. Keep in mind that it's best to take several samples--8-10--and that the small intestine is over 20 feet long and even though biopsy is still considered by most as the Gold Standard (but that is slowly changing), it can and does miss damage sometimes due to the patchy nature of the damage.

klo289 Newbie
klo289
Posted
  • Author

See if they took samples of the lining of your small intestine and biopsied them. Keep in mind that it's best to take several samples--8-10--and that the small intestine is over 20 feet long and even though biopsy is still considered by most as the Gold Standard (but that is slowly changing), it can and does miss damage sometimes due to the patchy nature of the damage.

Well, it appears that they only took 2 biopsies. One labeled "small bowel" and one "antrum." The report says something about the first biopsy rules out sprue, so I guess they tested for it. It said that I had a preserved villous pattern and that the crypt to villous ratio is 0.3. It mentions a few polymorphonuclear leukocytes, paneth cells, and some lymphoid deposits present. I'm not really sure what any of this means but maybe someone on here does. I'm not really sure where to proceed from here since it appears they looked for celiac.

psawyer Proficient
psawyer
Posted

Taking only one sample is not enough. Damage can be patchy. False negatives are common, especially when a small number of samples are taken or they are all taken very close together.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Well, it appears that they only took 2 biopsies. One labeled "small bowel" and one "antrum." The report says something about the first biopsy rules out sprue, so I guess they tested for it. It said that I had a preserved villous pattern and that the crypt to villous ratio is 0.3. It mentions a few polymorphonuclear leukocytes, paneth cells, and some lymphoid deposits present. I'm not really sure what any of this means but maybe someone on here does. I'm not really sure where to proceed from here since it appears they looked for celiac.

Where you go from here is a strict trial of the diet. Go with whole unprocessed foods at first to avoid CC issues.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,718
    • Most Online (within 30 mins)
      7,748
    naez0923
    Newest Member
    naez0923
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
    • Wends
      Inconclusive results

      By Wends · Posted

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
×
×
  • 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.