Risk of Not Having EGD Endoscopy

[VLH]

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.

[cyclinglady]

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]

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]

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]

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]

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