Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Pre-Endo Freak Out


mbadger2

Recommended Posts

mbadger2 Newbie

I am going in for an endoscopy first thing tomorrow and my nerves have grown arms...lots of them. I am nervous about the procedure but I am sure it will be fine. The nurse called today and said I would be "absolutely comfortable." I am afraid that the blood test will be confirmed but I am equally scared that it won't. I am scared that they will find something that we aren't even looking for (maybe the watermelon tree mom always said would grow if I ate the seeds?). Anyway, maybe I should have let the positive blood test be enough (tTG IgA was 133 with >19 positive). My thinking is that I should know if there is damage and my hope is that, if I get a confirmed diagnosis, my kids can be screened and diagnosed by blood, saving them from the endoscopy.

On a side note, I am walking around my kitchen eating some of all the food I love (literally ALL of it) that I may not be able to have again. I am so totally uncomfortable and my stomach feels like it has pop rocks in it. Necessary? No. Justified? I think so. :)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.

Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.

mbadger2 Newbie

The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.

Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.

The endoscopy was a total breeze. I was OUT like a light and don't remember a thing. The doctor said that he did not see any obvious damage but will know more once the samples are looked at. He did says that, based on my blood work, he feels stronly that this is celiac and I should remove gluten. This doctor was great. He said his dad has celiac and this makes me think that he is more aware than others (like every other doctor I have ever had). I feel lucky to have found him and my PCP. For my entire adult life my doctors have told me that I am stressed and depressed and need to be medicated. Every symptom I have was blamed on depression. I started saying no to medication years ago because it never really helped. I finally found a doctor that listens and here we are. There are good ones out there, you just have to keep looking!

Angel M Rookie

So glad your EGD went well. I cried like a baby when they took me back. It really wasn't bad at all, but I was terrified since I've never had any kind of procedure done. My doctor diagnosed me based on a blood test as well. The only damage found in me was inflammation. The doctors don't always find damage with a biopsy. You'll likely feel a lot better once you start gluten free. It can be very difficult at times, but I also find it to be quite fun when I try new recipes that taste fantastic or when I find something new at the grocery store!

beachbirdie Contributor

The endoscopy was a total breeze.

So glad everything went smoothly. Sounds like you have an amazing doctor as well. I think people get really good care from docs that have a personal stake in a condition! How rare to find one with celiac in his family. :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    2. - Scott Adams replied to DMCeliac's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Canned tomato sauce, ricotta?

    3. - PlanetJanet replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    4. - PlanetJanet replied to PlanetJanet's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Modified Food Starch

    5. - PlanetJanet replied to PlanetJanet's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Modified Food Starch


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,715
    • Most Online (within 30 mins)
      7,748

    Delores M Harris
    Newest Member
    Delores M Harris
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @PlanetJanet, Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try. Here are articles on these vitamins and pain relief... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ And... Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review https://pubmed.ncbi.nlm.nih.gov/33865694/
    • Scott Adams
      Here is the info from their website. If you don't trust them, you may find products that are labelled "gluten-free," but I don't see any reason to believe there is any gluten in them. Hunt's Tomato Paste: https://www.hunts.com/tomato-sauce-paste/tomato-paste   Hunt's Tomato Sauce: https://www.hunts.com/tomato-sauce-and-paste/tomato-sauce  
    • PlanetJanet
      Hi, trents, Thanks for responding! One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants.  My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy. Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury. I feel so alone.
    • PlanetJanet
      They say maltodextrin is gluten-free, even if it's made from wheat, because the gluten is processed away.  It makes no difference to my body.  I still get uncontrollable flatulence and leakage.  Happens every time, even if I refuse to believe it will happen.  Once I was taking Gas-X chewables to hang around with people I was visiting and staying with, to make sure I would feel safer and more comfortable.  WRONG.  I forgot to read the label. I didn't realize it till after I left and went home--MALTODEXTRIN.  I was miserable the whole time. The second gastroenterologist I saw made the tentative diagnosis of microscopic colitis.  Usually occurs in women over 60, I was 59, had been in a crash, (2020) was taking alot of NSAIDS, muscle relaxants.  Had constant diarrhea, gas, leaking.  Unbearable, and I didn't know it was NSAIDS.  I was scheduled for two-way endoscopy, mouth to butt, but they wanted $2,000 up front.  Finally, had a colonoscopy in 2022, 10 biopsies, didn't find a thing!  MC can go into remission, which I was, of course, desperate to do.  No more NSAIDS, tried to cut down on all the other pain killers, everything, chemicals that I knew triggered me.  So, no, they didn't find anything.  So sad that we have to make ourselves sicker and more injured to get a proper diagnosis! Microscopic colitis is being seen concurrently with gluten problems.  MC can be triggered by NSAIDS, SSRI's, all kinds of things. https://my.clevelandclinic.org/health/diseases/17227-microscopic-colitis Some links for maltodextrin health effects: https://pmc.ncbi.nlm.nih.gov/articles/PMC6409436/#:~:text=Altogether%2C these findings show that,the development of intestinal inflammation. https://www.mdedge.com/internalmedicine/article/193956/gastroenterology/maltodextrin-may-increase-colitis-risk  
    • PlanetJanet
      Titanium dioxide is that chemical in vitamins, toothpaste, and processed white foods that is the whitener for the pill coloring.  It is inflammatory for me.  I have an intestinal reaction to it, every time. https://www.webmd.com/diet/titanium-dioxide-in-food https://pmc.ncbi.nlm.nih.gov/articles/PMC11295244/#:~:text=EFSA concluded that titanium dioxide,uncertainties in recent toxicological studies.
×
×
  • Create New...