Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Post Endoscopy, Awaiting Results And Confused

archaeo in FL

Recommended Posts

archaeo in FL Apprentice
archaeo in FL
Posted

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!

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

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 Enthusiast
MitziG
Posted

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 Mentor
ravenwoodglass
Posted

The blood tests are very, very accurate. Welcome!

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

archaeo in FL Apprentice
archaeo in FL
Posted
  • Author

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 Community Regular
sa1937
Posted

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 Enthusiast
Mnicole1981
Posted

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.

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

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

  • 3 weeks later...
archaeo in FL Apprentice
archaeo in FL
Posted
  • Author

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 Enthusiast
Takala
Posted

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. :ph34r:

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. B) 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.

Archived

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

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


  • Member Statistics

    • Total Members
      131,946
    • Most Online (within 30 mins)
      7,748
    Miva
    Newest Member
    Miva
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.