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Can Endoscopy Miss Celiac?

klo289

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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.

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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.

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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.

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