Post Endoscopy, Awaiting Results And Confused

[archaeo in FL]

Hello all,

I am new and am awaiting biopsy results from my upper endoscopy, done yesterday. My GI sent me back for more bloodwork (I had only had TTG IgA before, scored over 100 with anything over 8 said to be positive on reference sheet; this morning I had a huge list of things she wanted checked, and left quite a few vials of blood at the lab!). The GI doc said the endoscopy results were "boring," but she did take biopsies. When I wasn't as loopy from sedation, I looked at the sheet she gave me afterward, and though my esophagus looked normal, she noted "gastritis, duodenitis, and congested duodenal mucosa," all of which were biopsied.

Do I understand correctly that some other condition may cause elevated TTG IgA, and that if I do not have Celiac I should continue looking for what is caused those elevated levels? Something must be causing inflammation of my internal organs, right?

What sent me looking in the first place was a great GP. I've been having trouble with my bladder and lower pelvic area, but with no diagnosis of anything in particular. Then the fatigue set in, and she found that I had quite a few vitamin deficiencies (am now taking lots of supplements, which helped for a while but I'm still really tired). I've had bowel issues for years, but after seeing some very-not-helpful docs I stopped bringing those issues up. I once had one of them give me a bulking laxative when I complained of constant diarrhea - no kidding.

Even if the biopsies come back negative, I'll try going gluten free for a while to see if that helps.

Anyone able to provide feedback on similar preliminary endoscopy results? I know that ultimately I just need to wait for biopsy and bloodwork results, but I'm also frustrated that the GI doc said she's see me "in 3 months." Really? A surgery follow up in three months?

Any help appreciated!

[sa1937]

Welcome to the forum!

When I had my endoscopy/biopsy, I also had gastritis and duodenitis, which is just other words for inflammation. My tTG was also >100 with >8 being positive although my doctor ordered the complete celiac panel, not just a single test. Depending on how many biopsies the dr. took, hopefully they'll be revealing. It's possible it may come back negative as damage can be patchy but that doesn't mean you don't have celiac.

If you've had all your celiac tests done, there's no reason for you to wait to go gluten-free pending the pathology report, which might take a week or two. Make sure you pick up a copy of it and any other tests she ordered. I don't understand why you wouldn't have a follow-up with her as soon as the other test results are in. Doesn't make sense to me...but then I know a lot of things don't make sense regarding celiac testing and diagnosis.

[MitziG]

You have celiac disease. The blood tests are very, very accurate. Now that you had the biopsy done to "confirm" what the blood test already said (I think the whole endoscopy thing is primarily about generating $) you need to go gluten free. Your life and your health will change.

If by chance your biopsy is negative, disregard it. Biopsies frequently miss celiac. Damage is often patchy, and doctors frequently do not take enough samples, or sample from the right spot, so it is missed.

Search around this forum- you will learn more here than any doctor will tell you.

Welcome!

[ravenwoodglass]

The blood tests are very, very accurate. Welcome!

This only applies when they are positive. False negatives are fairly common.

[archaeo in FL]

Thanks, everyone!

I really appreciate the responses!

I'm hoping the tests come back soon, and are definitive. I've already had friends saying things like "ok, but if you eat a cookie it's not going to kill you, right?" I think in some way they're just trying to understand but it'll be so much easier to explain to people if I have a full-blown "problem" and not something that's more difficult to explain like borderline results.

I've been eating wheat in some form at nearly every meal for the past few weeks and I feel so bloated and gross, I'll be happy to stop. I do feel like it'll take some test results for me to be as stringent as maybe I should be (especially when eating out).

Did anyone find out they also have a problem with dairy? I've known that it makes me gassy and bloated but I've been consuming it too. I went for a while without it, but I really missed yogurt, and it was a slippery slope after I reintroduced that... There is a great ice cream shop near me, though, that makes homemade vegan ice cream, so in addition to avoiding dairy I know I can find out all of the ingredients if I need to avoid gluten!

[sa1937]

Thanks, everyone!

I really appreciate the responses!

I'm hoping the tests come back soon, and are definitive. I've already had friends saying things like "ok, but if you eat a cookie it's not going to kill you, right?" I think in some way they're just trying to understand but it'll be so much easier to explain to people if I have a full-blown "problem" and not something that's more difficult to explain like borderline results.

I've been eating wheat in some form at nearly every meal for the past few weeks and I feel so bloated and gross, I'll be happy to stop. I do feel like it'll take some test results for me to be as stringent as maybe I should be (especially when eating out).

Did anyone find out they also have a problem with dairy? I've known that it makes me gassy and bloated but I've been consuming it too. I went for a while without it, but I really missed yogurt, and it was a slippery slope after I reintroduced that... There is a great ice cream shop near me, though, that makes homemade vegan ice cream, so in addition to avoiding dairy I know I can find out all of the ingredients if I need to avoid gluten!

Really, if all your celiac testing is done, you can go gluten-free right now. Why wait? And if the dr. wants to do more diagnostic testing down the road, a gluten-free diet isn't going to interfere with other tests.

I think we've all heard "a little bit isn't going to hurt you...after all, so-and-so did". So that's a time to educate and hope they listen. I had no problems with my friends or family although I heard "the little bit" from friends. It's just easy for me to say no and mean it. And my family saw me at my worse so that was a no-brainer. There's nothing quite so sweet as feeling well.

A lot of us did have problems with dairy and I really craved it, especially cheese. Giving up gluten was easy but dairy was tough. I pretty well avoided it for almost 9 months except I did buy Lactaid milk. Now I do eat dairy products with no problem (not everyone can, of course).

[Mnicole1981]

Thanks, everyone!

I really appreciate the responses!

I'm hoping the tests come back soon, and are definitive. I've already had friends saying things like "ok, but if you eat a cookie it's not going to kill you, right?" I think in some way they're just trying to understand but it'll be so much easier to explain to people if I have a full-blown "problem" and not something that's more difficult to explain like borderline results.

I've been eating wheat in some form at nearly every meal for the past few weeks and I feel so bloated and gross, I'll be happy to stop. I do feel like it'll take some test results for me to be as stringent as maybe I should be (especially when eating out).

Did anyone find out they also have a problem with dairy? I've known that it makes me gassy and bloated but I've been consuming it too. I went for a while without it, but I really missed yogurt, and it was a slippery slope after I reintroduced that... There is a great ice cream shop near me, though, that makes homemade vegan ice cream, so in addition to avoiding dairy I know I can find out all of the ingredients if I need to avoid gluten!

I realize I had a huge problem with dairy about 4 or 5 years ago, when I would have the foulest gas after eating cereal with skim milk. Recently, I have had gas after eating Greek yogurt. That did not seem normal to me.

[MitziG]

Ravenwoodglass- oops! I apologize for not making that clear. That is what I meant!

[archaeo in FL]

Thanks again, everyone. I heard back from my GI's nurse last week, the biopsies came back positive for celiac. After a couple of attempts, I have been gluten-free for about a week, and I've seen some positive changes, but some surprising not-so-good ones too, which I assume will resolve themselves. I am still awaiting the results of the extensive blood tests she ordered, which I'm really curious about.

My follow-up appointment isn't scheduled until August - apparently she takes the summer off. I'm thinking of calling my GP to see if there is a nutritionist or dietician she recommends for Celiacs - I'm not concerned about eating healthy (I eat mostly fruit and vegetables, with PB, tamari, brown rice, some corn - giving up dairy has been harder than gluten, just like for you, sa1937!) but working with someone to monitor my vitamins and to see if any modifications to what I'm doing would be suggested. My past experience with nutritionists/dieticians is not so positive, though - I had borderline high cholesterol when I left college (eating about two blocks of cheese a week will do that to you!), but other than cutting back on the cheese the nutritionist had absolutely no suggestions for my diet, and I had to pay for it out of pocket. Turned out, too, that my cholesterol was in the high range of normal, not actually high.

Anyway, I'm excited to continue down the path and see where it goes... hopefully to feeling better!

[Takala]

Well, that was kind of the nurse from the GI's office to bother to call you with a positive biopsy report, since you're paying for their summer vacation.

Now, go to the nice office and get hard copies of the test results (somebody has them...... ) and copy those, keeping a set for yourself, and schlepp the things over to your General Practitioner. Even if they don't have a nutritionist to recommend, you can tell them you're all excited about starting your new gluten free life and getting healthier.

And you will need a new toaster, cutting board, wooden kitchen utensils, colander...... and check for anything that goes into your mouth, such as over the counter or prescription medications, toothpaste, etc, to have gluten free status.