Endoscopy #2 (?) ....would You?

[newinNashville]

What would you do ?...

My GI doc #1 did an endoscopy early Feb. the pathologist labwork said that I tested positive for Celiac Sprue. My bloodwork was negative. My GI doc told me to go on the gluten free diet for a few weeks and report back. I still felt horrible after 4 weeks and he refferred me to GI doc#2 at a nearby teaching institute.

Gi doc#2 listened to all my symptoms read teh pathology lab report from GI#1. She told me to eat whatever I wanted and to not worry about Celiac disease. She sent me for a ton of bloodwork and an abnominal & pelvic CT scan. Once again, everything was normal. It has been another two weeks. She called me last nigth and wants to repeat the endoscopy and test for Celiac disease claiming her lab will be more thourough. I highly doubt that my insurance will cover since they are only a few weeks apart. At this point, what does it matter? Shouldn't I just stick to the diet (which I still have yet to see results from ?) She said that Celiac needs to be confirmed or denied. I questioned here saying that since I was on a gluten free diet wouln't the villi be HEALING?

I am getting frustrated. Would you have the 2nd endoscopy done? Or just call it quits with GI#1 saying definitely Celiac disease from the endoscopy?

Any thoughts will be greatly appiciated!!

[CarlaB]

If the first lab showed villi damage, I don't understand the need for a more thorough lab. What more could the more thorough lab tell you? I would ask her that ... maybe I'm missing something here. Maybe she thinks the damage is from something other than celiac? If so, I would find out what she's thinking. I would also find out what information your first endoscopy was missing.

Many people take more than 4 weeks for the villi to heal and to feel better.

[dlp252]

And as far as having more than one scope, I had three endoscopes and a colonscopy done last year within just a few weeks of one another. I had the first one with the colonoscopy then the second one the following week. The third was about 3 months later. My insurance paid its share for all of them (less any deductibles, etc.). I guess, it's possible it may have been different in my case since in the first scope they were looking for a lot of things, including celiac damage, but found a growth, so the second and third scopes were to get a biopsy of the growth and then to do a follow up biopsy to recheck the growth after trying some medication.

[jerseyangel]

Hi and welcome

I don't see the point of doing another biopsy. Yours was positive.

It can sometimes take a while before you begin feeling better on the gluten-free diet. My doctor didn't have me come back for 2 months after my endo. I think you need to give the diet more time.

Also, are you sure that you're 100% gluten-free? Have you checked your personal care products, replaced your toaster, wooden cutting boards and spoons, collander? I'm just wondering if you are still getting some gluten from somewhere. Vitamins and medications can also contain gluten.

Did you improve at all just after beginning the diet? Many times what happens is that after eliminating gluten, we become extremely sensitive to smaller amounts of it. This, coupled with the mistakes we all make at the beginning can make the recovery seem slow or uneven.

[newinNashville]

She is wanting to do the 2nd endoscope in her words to 'rule out celiac disease'. She doesn't feel like they tested enough different areas of the villi in the first endoscope. But Celiac disease is what GI#1 already confirmed with his endoscope. So I am just thinking, WHAT IS THE POINT? GI#1 sent me to the teaching institution to make sure there where no gall bladder problems or anything else. Because I still have a ton of pain in between my shoulder blades after I eat. But like all my gall bladder tests (ultrasound, and nuclear medicine) the CT scans came back normal as well.

I just feel like they have me running around in circles for no reason.

I am just frustrated. I don't really have your 'typical' if there is such a thing celiac symptoms. I have extreme nausea and back pain and diffuculty swallowing.

[JerryK]

What would you do ?...

I am getting frustrated. Would you have the 2nd endoscopy done? Or just call it quits with GI#1 saying definitely Celiac disease from the endoscopy?

Any thoughts will be greatly appiciated!!

I would accept the first diagnosis, it's more than many people get. I would only agree to more testing if the gluten-free diet didn't help after a substantial time. j

[CarlaB]

Damage can be patchy ... sometimes the biopsy is negative because it was taken from a place with no damage ... doing another endoscopy that shows no damage proves nothing because damage was already found.

If she was looking for more information from her more thorough lab, then I'd consider it, but since it's just to prove there is no damage when damage is already found, it sounds unnecessary.

[mamabear]

I agree with JerryK and jerseyangel.....you already have a pathologist's diagnosis on the first endoscopy. I can't imagine the reasoning for a second EGD now to reaffirm what the first showed. She wants more better what???? Sounds like GI#2 is not as cognizant about celiac as a tertiary specialist should be and is wanting her own studies...for her own agenda. What does GI#1 say about the need for another scope???

[Ursa Major]

GI no. 2 wants to do another endoscopy to rule out celiac disease, and tells you to eat whatever you want? You already have a firm diagnosis of celiac disease, and should NEVER eat gluten again. If it was me, that second GI would never see me again, she doesn't know what the heck she is doing.

Have you eliminated dairy from your diet? If your villi are blunted, you can't produce the enzyme lactase (it's produced by the tips of the villi), which is needed to digest dairy. Many people won't get better until they eliminate dairy as well as gluten, at least for the first few months. You can try dairy again after about six months, to see if it's okay.

[newinNashville]

Thanks for the advice! I am a huge dairy fan. So I probably need to eliminate it for now. I LOVE yogurt. So I will take it out of my diet for awhile.

I was leaning towards not having the 2nd endoscopy done. Because it will prove nothing!

THANKS AGAIN! I have been so lucky to have found this website. Everyone hear that I have heard from has been so helpful.

THANK YOU!!

[Ursa Major]

Please let us know if removing dairy from your diet will be helpful in alleviating your symptoms. I am glad you aren't listening to the second GI. Her advice shows complete ignorance. What would be the point of making yourself really sick again?

I hope you'll feel much better soon!

[happygirl]

You have a gold standard diagnosis. No matter what you choose, I would find a doctor who actually knows something about Celiac, not this one!

[happygirl]

double post: deleted.