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

Risk of Not Having EGD Endoscopy


VLH

Recommended Posts

VLH Newbie

Since diet is the treatment, what if any risk is there to bypass the Endoscope? If symptoms are gone with diet, there would be no reason to scope. If symptoms persist after diet, then I can understand possible benefit of endoscopy. Thank you for insights.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Take a look at my response to your comment in another thread.  

If you can commit to the diet and your doctor will give you an official diagnosis, then it can be done.  My own husband  went gluten-free 12 years before me (poor advice from two medical doctors).  The diet worked.  He will tell you that I have received way more support from family, friends and medical staff.  This is probably not going to happen, but if I went to jail, under the ADA act, I must be accommodated (I hope).

Of course, you could go gluten free, feel great, get sick again and then have an endoscopy.  The problem is that on a gluten-free diet, you will heal.  The doctor might find something like SIBO or IBD but note that your villi sure intact.   So, if you do decide on an endoscopy, be sure to get back on a gluten diet (which has its own set of problems).  

If your doctor is willing, consider trying to get that diagnosis in your chart.  

Your best defense is to research so that you and your doctor can make the best decision for you.  

GFinDC Veteran

You probably won't get an official celiac diagnosis without the endoscopy.  But, yes, the treatment is the same regardless, a gluten-free diet.

ravenwoodglass Mentor

If you had clearly positive blood work then talk to your doctor. Some doctors will give an official diagnosis based on symptom relief and decrease in antibodies.

Jenny8413 Rookie

Having skipped the endoscope, going gluten-free for a year or so, still having problems and getting worse, and then doing the gluten-challenge endoscope, I highly recommend having the endoscope for diagnosis.  Without it, you will lose your baseline, how your villi looked before the gluten-free diet.  If you do great on diet, then celebrate.  But if you have problems going forward, a year from now they can do another scope and you will have the previous scope results to compare it to...valuable in knowing if you are healing or if you have continued gluten exposure from cross contamination or hidden gluten, or if you have refractory celiac.  If you miss the opportunity to know how much damage has been done to your villi while eating gluten, you'll never know unless you do the 6-week gluten challenge, which I can say was truly a challenge when you have symptoms.  Celiac disease symptoms cross over to similar symptoms from other conditions like Sucrose malabsorption or Giardia, etc.  If your insurance covers the endoscope, nail down the diagnosis so you don't waiver in questioning it.  I feel it is important to get a baseline endoscope before going gluten-free.  I regret that I missed the chance to document my starting point before going gluten-free.  (4 years since diagnosis, I'm still uncovering related issues such as the Surcrose malaborption which is also due to Celiac damage), and knowing the extent of damage to my villi helps me understand why I cannot produce Lactase or Sucrase.  

Beverage Rising Star

I got an official written diagnosis WITHOUT the endoscopy.  It's getting more accepted by celiac knowledgeable physicians (mine was an MD that is also a naturopath) if you meet these 3 points:

1.  positive antibodies in blood test

2. positive DNA test

3. response to the gluten free diet

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,831
    • Most Online (within 30 mins)
      7,748

    BIg Nodge
    Newest Member
    BIg Nodge
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
    • Scott Adams
      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
    • Scott Adams
      Based on your results, it seems unlikely that you have celiac disease. A negative endoscopy and the absence of HLA-DQ2/DQ8 genes (the primary genetic markers for celiac) strongly suggest you do not have the condition. However, the elevated TTG-IgA (22) could indicate a temporary immune response or another issue, such as a different autoimmune disorder, intestinal infection, or even a lab anomaly. The presence of DQA1*05 alone is not diagnostic for celiac. Meeting with an allergist and GI specialist is a good next step to explore other potential causes for the high antibodies, such as non-celiac gluten sensitivity or other immune-related conditions. Keep a detailed food and symptom diary to help guide further testing and discussions with your doctors. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Captain173
      I had celiac panel done back in October, only ttg iga came back high  (22 with positive being over 3). Endoscopy done in January, it was  negative. Genetic test done after endoscopy, negative for both hla dq2 & dq8. Did show positive for dqa1*05.  Scheduled to meet with an allergist next week. Not scheduled to meet with GI specialist till after allergist. Confused if I have celiac or what caused high the antibodies originally if I do not.
×
×
  • Create New...