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Endoscopy/colonoscopy

ksymonds84

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ksymonds84 Enthusiast
ksymonds84
Posted

When I first thought I had a problem I went gluten free first then did the blood test which was negative. I didn't do an endoscopy because well to be honest I was a big chicken! I settled for the gluten intolerance based on dietary response diagnoses. As some may remember, I started doubting my diagnoses because I still wasn't completely better by last spring after being over a year gluten free. I tried gluten challenging May and June but had to stop in July because I couldn't handle the discomfort any longer. I forked out money for Enterolab which was positive for gluten intolerance and showed I carried both main celiac genes so feel that it was worth it. I still felt like something else could be wrong so I saw a GI who specializes in celiac and he convinced me to do the colonoscopy and endoscopy together. I was a nervous wreck but had it done yesterday. Let me tell you, other than the prep the day before, it was a piece of cake! I don't remember a thing about it! I don't even remember the Dr. coming into my room to discuss his findings! My husband had to tell me everything he said. My colonoscopy was clean as a whistle (I had a fear of polyps ect). My endoscopy showed patches of redness and inflammation that he did a biopsy but told my husband was celiac related but no real damage or suspicions of cancer etc. So I've been worrying over nothing and wish I would have just done the tests in the beginning. If I would have been alert I would have asked him if the inflammation could have been caused by the two month gluten challenge or if I am just slow healing since I discovered this in my 40's. I am gluten free over 1 1/2 years minus the two month challenge. If anyone has opinions on this please let me know. The only side effects that I am experiencing is that my throat seems tender but not painful. Also thought I would share for those that fear these procedures like I did.

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zero Newbie
zero
Posted

For my endoscopy/colonoscopy the doctor noted inflammation in the stomach. He said that this can be caused by all of the laxatives taken to prep for the colonoscopy. My experience was similar to yours -- it was just about the easiest medical test I have ever had.

ksymonds84 Enthusiast
ksymonds84
Posted
  • Author
For my endoscopy/colonoscopy the doctor noted inflammation in the stomach. He said that this can be caused by all of the laxatives taken to prep for the colonoscopy. My experience was similar to yours -- it was just about the easiest medical test I have ever had.

yes, I too had infammation in my stomach as well as several patches in my upper intestine. I'm sure the laxatives did a number on my stomach. I don't see myself drinking orange gaterade any time in the near future ;)

ang1e0251 Contributor
ang1e0251
Posted

Since you didn't mention the inflammation was in your stomach I will assume it was small intestine. Yes, it is from your challenge. That's exactly why the doc's want you to challenge before a procedure. Luckily you still showed damage for you test even though you stopped your challenge. That also shows you that you are a slow healer so it's no surprise it took you so long to feel better. You could still have other food sensitivities as you noted yourself but now you know the good news of what you don't have. Now you can refine your diet to feel great!

ksymonds84 Enthusiast
ksymonds84
Posted
  • Author
Since you didn't mention the inflammation was in your stomach I will assume it was small intestine. Yes, it is from your challenge. That's exactly why the doc's want you to challenge before a procedure. Luckily you still showed damage for you test even though you stopped your challenge. That also shows you that you are a slow healer so it's no surprise it took you so long to feel better. You could still have other food sensitivities as you noted yourself but now you know the good news of what you don't have. Now you can refine your diet to feel great!

Thank you for responding. I did have inflammation in my stomach but also in various patches in my upper small intestines. He showed my husband pics of where he took biopsies (he showed me as well but don't remember!). I think you are right and I am a slow healer! I wish I would have known about Celiac 20 years ago but feeling better everyday now.

lonewolf Collaborator
lonewolf
Posted
As some may remember, I started doubting my diagnoses because I still wasn't completely better by last spring after being over a year gluten free.

Just something to keep in mind - if you're still not getting better with gluten-free alone, you might want to consider trying the Specific Carbohydrate Diet. It's a bit more challenging, but it's also not necessarily for life - just until all the symptoms are gone for a while.

grainfree Newbie
grainfree
Posted
When I first thought I had a problem I went gluten free first then did the blood test which was negative. I didn't do an endoscopy because well to be honest I was a big chicken! I settled for the gluten intolerance based on dietary response diagnoses. As some may remember, I started doubting my diagnoses because I still wasn't completely better by last spring after being over a year gluten free. I tried gluten challenging May and June but had to stop in July because I couldn't handle the discomfort any longer. I forked out money for Enterolab which was positive for gluten intolerance and showed I carried both main celiac genes so feel that it was worth it. I still felt like something else could be wrong so I saw a GI who specializes in celiac and he convinced me to do the colonoscopy and endoscopy together. I was a nervous wreck but had it done yesterday. Let me tell you, other than the prep the day before, it was a piece of cake! I don't remember a thing about it! I don't even remember the Dr. coming into my room to discuss his findings! My husband had to tell me everything he said. My colonoscopy was clean as a whistle (I had a fear of polyps ect). My endoscopy showed patches of redness and inflammation that he did a biopsy but told my husband was celiac related but no real damage or suspicions of cancer etc. So I've been worrying over nothing and wish I would have just done the tests in the beginning. If I would have been alert I would have asked him if the inflammation could have been caused by the two month gluten challenge or if I am just slow healing since I discovered this in my 40's. I am gluten free over 1 1/2 years minus the two month challenge. If anyone has opinions on this please let me know. The only side effects that I am experiencing is that my throat seems tender but not painful. Also thought I would share for those that fear these procedures like I did.

Thanks for the post. I fear the endoscopy procedure less than the preparation needed for it - gluten-inclusion diet. To cut through the myriad unknowns of what to eat I am seeking a diagnosis. The symptoms are wreaking havoc and a medical diagnosis will hopefully ease worries. Seems like an eternity away from today but. There you go.

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      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 😅
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      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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