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

Just Had My Endoscopy Today...confirmed My Celiac


scott-in-pa

Recommended Posts

scott-in-pa Rookie

Hello everyone,

I just had my endoscopy this afternoon which confirmed my Celiac (had tested a "strong positive" on my bloodwork from about 3 wks ago). The results revealed Duodenitis with ulcerations (lots); evidence of scalloping og mucosa as well. They took multiple biopsies, too, but those results won't be back for about 2 wks. My question is...what comes next? Should I contact my G.I. offices and ask to meet with the dietician? Or just dive right into Gluten-free eating? Any advice would be greatly appreciated.

Thanks very much,

Scott-in-PA


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

I'd start the gluten free diet! Good luck! Ask lots of questions here on this site...it's the best around!

Lisa Mentor
Hello everyone,

I just had my endoscopy this afternoon which confirmed my Celiac (had tested a "strong positive" on my bloodwork from about 3 wks ago). The results revealed Duodenitis with ulcerations (lots); evidence of scalloping og mucosa as well. They took multiple biopsies, too, but those results won't be back for about 2 wks. My question is...what comes next? Should I contact my G.I. offices and ask to meet with the dietician? Or just dive right into Gluten-free eating? Any advice would be greatly appreciated.

Thanks very much,

Scott-in-PA

Welcome to the Club Scott!

Most of the information regarding the gluten free diet can be found here. With your biopsy concluded, you can begin the diet immediately.

I would recommend a good metabolic panel to see if you are deficient in vitamins and minerals and go from there. Start the diet simply. Meat, seafood, rice potatoes, fresh veggies and fruit prepared simply is a good start. You can add things as you master the diet. A new toaster is a must as is older wooden spoons and scratched non-stick pans which would hold gluten from your pre-dx'd time.

The diet is fairly complex overall. Learning to read labels is the only way to be safe and cross contamination is a common trap. Reading here is the best information you can find.

Again, welcome.

scott-in-pa Rookie
Welcome to the Club Scott!

Most of the information regarding the gluten free diet can be found here. With your biopsy concluded, you can begin the diet immediately.

I would recommend a good metabolic panel to see if you are deficient in vitamins and minerals and go from there. Start the diet simply. Meat, seafood, rice potatoes, fresh veggies and fruit prepared simply is a good start. You can add things as you master the diet. A new toaster is a must as is older wooden spoons and scratched non-stick pans which would hold gluten from your pre-dx'd time.

The diet is fairly complex overall. Learning to read labels is the only way to be safe and cross contamination is a common trap. Reading here is the best information you can find.

Again, welcome.

Thanks very much for the advice-- the whole thing is a bit overwhelming. Starting simple is a good idea!

  • 2 weeks later...
ThatlldoGyp Rookie

Hi Scott, Dive in, do not wait. The sooner you start the sooner you can start feeling better. Start by eating whole foods for now, and getting all the "gluten free eating" literature that you can find. There are many, many good ones on this site. Then, get a gluten-free shopping book/bible and go through everything in your cabinets. Clean out anything that is gluteny or possibly cross contaminated (peanut butter, etc. that might have bread crumbs in it for example) I gave all my gluten stuff to the food pantry, so a clean out and a good deed at the same time.

I highly suggest that if you have a spouse or sig. other that they consider going mostly gluten-free as well. The risk of cross contamination is really high when you have gluten products in your home. If they are not ok with going gluten-free, then designate a gluten cabinet for their stuff and a section of the counter for them, the rest must be gluten-free. Also, designate a "gluten" dish sponge or cloth and one for yourself, and ne'er the 2 shall meet. Please follow Ma Goose's advice to change out your glutened cooking stuff, it really does help!

Next, try to go as "whole food" as you can. Your crock pot should be your best friend at this point. Processed foods are hard enough to digest, so especially in the beginning, you want to be as gentle with yourself as you can.. Also, no more buying anything from those bulk bins or open bars.. all it takes is one careless person dipping the wrong sccop or spoon into a gluten-free product to xcontam it.

The hardest bit? remembering to double check every little thing that goes into or gets near your mouth. This includes gum, lip balm,lotion,mints, etc. Good luck and congrats on your diagnosis!

happygirl Collaborator

Scott, I'm not sure where in PA you are. If you are near Harrisburg/Hershey, they have a great Gluten Intolerant Group (G.I.G).

Harrisburg:

Gluten Intolerance Group

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    2. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    4. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    5. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,145
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.