Jump to content

  • 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):

Should I Have An Endoscopy?

nickadooski

Recommended Posts

nickadooski Newbie
nickadooski
Posted

HI!

Earlier this year my sister was diagnosed with Celiac after she presented with fairly typical symptoms (daily diarrhea, bloating, abdominal pain).

After her diagnoses I asked to be tested as well. I just found out today my blood test was positive and my physician told me that given my family history and the blood test she did not think a endoscopy/biopsy was necessary. However she didn't seem too knowledgeable about the condition because she said I would "probably benefit from going on a gluten free diet" whereas my research seems to indicate if you have Celiac, going gluten free is not optional.

I do have some atypical symptoms including missed menstruation (previously attributed to PCOS, although I am second guessing that diagnoses), constipation, occasional (but more than normal) abdominal pain (mild-moderate).

Bottom line: my parents think I should get the endoscopy like my sister did to confirm. Do you think this is necessary/advisable?

thanks!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Just want to say that missed periods/ infertility, constipation, abdominal pain are not atypical. They are very common.

I decided to get the endo and a colonoscopy at the same time to see how bad the damage was and make sure there wasn't any other issues I needed to deal with. To me, it was worth the piece of mind of knowing what was going on in there.

billybobhobw Newbie
billybobhobw
Posted

If you could beat it to the punch then it is worth the time. The endo is a quick and painless exam. I was diagnosed a week ago and am so happy to have an answer as to why I have been feeling so bad. It has been years of feeling like garbage while being misdiagnosed over and over. I have been gluten free for only a week and can tell so much already. If I could have known before the symptoms become present I would have saved myself a lot of pain.

nickadooski Newbie
nickadooski
Posted
  • Author

Thanks for your responses I appreciate them. I am planning to go gluten free either way I guess I was just wondering if a positive blood test and a family history was enough for a diagnosis.

1desperateladysaved Proficient
1desperateladysaved
Posted

I didn't opt for endoscopy.  My MD said it was not necessary for me.  I was diagnosed with symptoms (I looked 5 months pregnant) and had an overwhelmingly positive genetic test for celiac. I also had a positive response to the gluten free diet.   I have since realized I had intestinal damaged by use of nutrition evaluation.  This gave me the added plus of being able to see how well my supplements are working.  Sometimes I wonder what my intestine looked like, but I am satisfied by watching how well it absorbs  I am still hoping that it will show some improvement.  Thus far, my iron levels have dropped, but they are only borderline low.

nvsmom Community Regular
nvsmom
Posted

I skipped the endoscopy too. I had two very positive blood tests, a good response to the gluten-free diet, a family history of celiac disease, and other autoimmune disorders - that was enough for me to go gluten-free. I too sometimes wonder what my villi would have looked like but on the flip side, what if I was one of those patients who ended up more confused because my doctor missed biopsying the damaged villi? I am content with my decision.

Some doctors will diagnose without a biopsy and others won't .... I have no real idea why doctors love their gold standard biopsy so much. It can be very helpful but it is not the be all, end all of diagnostic tools that some doctors imply.... In my opinion.

Good luck with the diet, and welcome to the board. :)

taynichaf Contributor
taynichaf
Posted

HI!

Earlier this year my sister was diagnosed with Celiac after she presented with fairly typical symptoms (daily diarrhea, bloating, abdominal pain).

After her diagnoses I asked to be tested as well. I just found out today my blood test was positive and my physician told me that given my family history and the blood test she did not think a endoscopy/biopsy was necessary. However she didn't seem too knowledgeable about the condition because she said I would "probably benefit from going on a gluten free diet" whereas my research seems to indicate if you have Celiac, going gluten free is not optional.

I do have some atypical symptoms including missed menstruation (previously attributed to PCOS, although I am second guessing that diagnoses), constipation, occasional (but more than normal) abdominal pain (mild-moderate).

Bottom line: my parents think I should get the endoscopy like my sister did to confirm. Do you think this is necessary/advisable?

thanks!

Yes get one before you go gluten free. You are a celiac and that means gluten free for the rest of your life! And somewhere down the road you might run into a doctor that will not take positive blood results as a diagnoses or something... idk, doctors are kinda dumb :/ ha. So just do it now, and get it done with! Its good to also be able to see how damaged your body is.

 

Good luck! I too had missed menstrations but negative blood tests :( I'm now waiting on my endoscopy results... I'm praying that the biopsies are positive... PLEASE pray for me! <3

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

Celiac.com Sponsor (A8-M):


nosy parker Apprentice
nosy parker
Posted

I agree with kareng.  Celiac can cause extensive damage and I would want to know what my insides had suffered.  I assume some baseline might be useful if you want to establish how healing has progressed in the future. 

 

I'm actually quite surprised that doctors diagnose celiac and then don't do a thorough evaluation of a person's health inside and out, given the serious ramifications of this disease. 

nvsmom Community Regular
nvsmom
Posted

I'm actually quite surprised that doctors diagnose celiac and then don't do a thorough evaluation of a person's health inside and out, given the serious ramifications of this disease. 

 

My doctor asked if I wanted a biopsy and I said no. I aready knew that my intestine was damaged because of my high test scores, and because I have had symptoms my entire life. I did not want to risk sedation so the doctors' could rank my damage, or miss the damage and confuse my diagnosis. If there was something else wrong in there, I figured they could check it out later if my symptoms didn't resolve - they would probably see other problems better once celiac damage is healing/healed anyways. But this is just my personal opinion and may not apply to others at all.

 

I do think an endoscopic biopsy is a good idea for some situations like if:

  • blood work is negative but celiac is strongly suspected due to symptoms or family history.
  • blood work is barely positive and could be attributed to other health problems. ie. a barely positive tTG IgA caused by infection or thyroid problem.
  • the patient needs more incentive to go gluten-free because they can't accept the positive blood work.
  • an exploratory colonoscopy is being performed - they might as well scope both ends while at it.

Archived

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

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

  • Member Statistics

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442
    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...