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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Should I Have An Endoscopy?
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9 posts in this topic

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!

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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.

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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.

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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.

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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.

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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. :)

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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

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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. 

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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.
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