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Colonoscopy - What To Ask And What To Expect

Pegleg84

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Pegleg84 Collaborator
Pegleg84
Posted

Hello all

so, I finally saw my GP today to get a referral to a gastroenterologist. I've been gluten free for 3.5 years, and still haven't seen a GI!

I've been having a lot of stomach pain and (likely) non-gluten related symptoms lately, so want to see if something else is wrong, or if I need to cut more out of my diet. (I have told my Dr flat-out that I'm not willing to do a gluten challenge for an endoscopy/official diagnosis. As far as my genetics and symptoms say, I have Celiac.)

Anyway, she is sending me for a colonoscopy first, then will see a GI (in hopefully not too many months). I have a consultation appointment next week, where I'm sure I'll get the low-down on the whole procedure.

For you professionals, any advice on what to ask at the consultation? And what to prepare for with the procedure?

This is necessary, but I'm not exactly excited, so the more info the better.

Thanks!

Peg

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kareng Grand Master
kareng
Posted

GI docs do the colonoscopy so I think you would see one before the procedure. While they are doing the colonoscopy, they can do an endo, too. Get both ends at once.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree get both procedures done at the same time. They won't be able to diagnose celiac if you have been gluten free for years but they can rule out other problems like ulcers and make sure your villi are fully healed and that you are not dealing with refractory celiac.

Pegleg84 Collaborator
Pegleg84
Posted
  • Author

Thanks guys

I'll be sure to ask about getting an endoscopy done as well. Get all the pain over at once.

(part of the reason why i've never been officially diagnosed was not wanting to suffer any longer to wait and get a biopsy done. Also, having things down my throat/up my arse not exactly on my to-do list...)

love2travel Mentor
love2travel
Posted

The procedures themselves are easy peasy. You are given a memory-erasing drug so it is as though you are knocked out the entire time. The colonoscopy prep isn't the most fun thing in the world (you drink a lot of liquid in a certain timeframe that causes serious diarrhea) but it is really not that bad. I had zero pain before, during or after both procedures. The last thing I remember is talking to my surgeon about cooking then suddenly I was in the recovery room, with my blurry husband holding my hand. My gut felt ever-so-slightly odd for two days but it was negligible. Two hours after the procedure I ate a full dinner with no problems.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
      Finding gluten free ingredients

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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