Shocked At Endoscopy Results

[CathleenAnna]

Dear Celiac Community,

I just had my endoscopy and biopsy this morning, after having positive blood tests a few weeks ago. Because I have had no g.i symptoms, and my other sx, including fatigue, had been manageable, I was expecting my scope to show mild, if any damage to the intestine. Instead, my doctor informed me that I have severe intestinal damage, probably developing since childhood! I saw photos and the villi are non-existant, the walls of the intestine looks smooth as linoleum!

Has anyone else had a similar experience? How does this news bode for my recovery?

Thank you for any information!

~ Cathleen

[tictax707]

When I had my endo done, I was sick, but it was only for a few weeks. I was sure I had some crazy bug, because before that i was relatively ok. Although looking back I did get sick on and off mysteriously, although not often. point is, I was flat as a pancake too. But I just had another endo done last year (6-7 years post diagnosis) and everything had grown back beautifully. I have been able to be very physically active, completing 3 ironmans all AFTER my diagnosis. So, don't lose hope. But do keep in mind that everyone is different, and it's a good idea to be extra nice to yourself and *very vigilant* about the diet.

[psawyer]

I had severe damage to my villi when the biopsy was taken, but it wasn't a surprise due the the severity of my symptoms. I had major symptoms for five years leading up to the biopsy, but in retrospect I had had digestive issues since childhood.

The recovery process will take time. I saw a major improvement in one month. Most symptoms were gone after four. I was completely symptom-free by the end of the first year.

[GFinDC]

Hi Cathleen,

The linoleum cases are 30% more likely to.. ok making it up, better stop now!

We are all different of course, so healing can vary. There are several members who report having no symptoms before diagnosis though. Silent celiac is the term for that. Some research shows healing can take up to 18 months. But many or most people here report much improvement after a short time. The tricky thing is, the process of healing can be a back and forth thing and you may have as many bad days as good days for a while. Also, many report becoming much more sensitive to gluten after being gluten-free a while. So you may develop reactions after being on the gluten-free diet that you don't have now or don't notice now.

Hmm, I think one term for villi wipe out is "scalloping". Sounds lovely doesn't it?

Some starting the gluten-free diet tips:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Easy yummy bread in minutes

[love2travel]

Dear Celiac Community,

I just had my endoscopy and biopsy this morning, after having positive blood tests a few weeks ago. Because I have had no g.i symptoms, and my other sx, including fatigue, had been manageable, I was expecting my scope to show mild, if any damage to the intestine. Instead, my doctor informed me that I have severe intestinal damage, probably developing since childhood! I saw photos and the villi are non-existant, the walls of the intestine looks smooth as linoleum!

Has anyone else had a similar experience? How does this news bode for my recovery?

Thank you for any information!

~ Cathleen

This was me! I refused to believe the bloodwork (I was in denial) but did believe the scopes. No GI symptoms, either. That was 15 months ago. I have been strictly gluten free ever since but still wonder how I would feel if I ingested gluten. I would never do that but there are times I wonder if I have ever been glutened or not because I cannot tell. Six months after that my bloodwork showed my previously off-the-charts positive number to be negative. Same with the next bloodwork six months later. Am due for another check soon.

Recovery occurs at different rates for us all because we are all so individual. As I feel no different it is difficult to tell how much I have healed. It is a weird situation, alright.

Welcome here! So many folks here are extremely experienced and full of wisdom. We all learn from each other.

[mbrookes]

Similar story to one above. Sick off and on for a long time. No idea why. Finally got REALLY sick and wound up in hospital near death. Really cool GI on call diagnosed and had endoscopy done. Totally slick. Never heard of Celiac before.Learned about Gluten free life quickly. Felt MUCH better in a couple of weeks. Been gluten-free for 5 years now. So normal to me. It's just the way I eat. And I eat well. Good food and it really gets easy after while.Don't panic and don't think it's the end of life as you know it. I eat out, have guests in and do all the things I used to do. I'm just careful about what I eat and I live a wonderful life.

[janiepoo7]

If I have been off gluten for like 3 weeks, is that too long off gluten to get the biopsy? And do I go to a gastroenterologist?

[RiaG14]

Same story as you Cathleeen, I never had ant symptoms and was sure my endoscopy would come back negative but there was in fact severe damage. Ive been gluten free for about 6 months and dont really feel any different. I often wonder if I am ingesting gluten unintentionally because I didnt have symptoms to know and I think that is the hardest part. My blood results were off the charts, snd my 3 month blood test showed my numbers come down into the 'high' range. I go again in october and hope it continues to go down. Im assuming my intestines are healing as my blood levelsgo down....i think repeat endoscopy is still 2.5 years away. I wish there were more positive checkpoints along the way.

Good news is that youve found the right place! This forum will be able to help answer so many questions along the way!

[CathleenAnna]

When I had my endo done, I was sick, but it was only for a few weeks. I was sure I had some crazy bug, because before that i was relatively ok. Although looking back I did get sick on and off mysteriously, although not often. point is, I was flat as a pancake too. But I just had another endo done last year (6-7 years post diagnosis) and everything had grown back beautifully. I have been able to be very physically active, completing 3 ironmans all AFTER my diagnosis. So, don't lose hope. But do keep in mind that everyone is different, and it's a good idea to be extra nice to yourself and *very vigilant* about the diet.

Thank you, Tictax! Your story is very encouraging and well done with the Ironmans! I will remind myself to be extra nice and vigilant...

[CathleenAnna]

I had severe damage to my villi when the biopsy was taken, but it wasn't a surprise due the the severity of my symptoms. I had major symptoms for five years leading up to the biopsy, but in retrospect I had had digestive issues since childhood.

The recovery process will take time. I saw a major improvement in one month. Most symptoms were gone after four. I was completely symptom-free by the end of the first year.

Thank you, psawyer for sharing your timeframe. Best wishes with your continued healing!

[CathleenAnna]

Hi Cathleen,

The linoleum cases are 30% more likely to.. ok making it up, better stop now!

We are all different of course, so healing can vary. There are several members who report having no symptoms before diagnosis though. Silent celiac is the term for that. Some research shows healing can take up to 18 months. But many or most people here report much improvement after a short time. The tricky thing is, the process of healing can be a back and forth thing and you may have as many bad days as good days for a while. Also, many report becoming much more sensitive to gluten after being gluten-free a while. So you may develop reactions after being on the gluten-free diet that you don't have now or don't notice now.

Hmm, I think one term for villi wipe out is "scalloping". Sounds lovely doesn't it?

Some starting the gluten-free diet tips:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Easy yummy bread in minutes

GfinDC, your advise and resources are much appreciated, I will

put them to good use! Also, thanks for making me smile!

[CathleenAnna]

This was me! I refused to believe the bloodwork (I was in denial) but did believe the scopes. No GI symptoms, either. That was 15 months ago. I have been strictly gluten free ever since but still wonder how I would feel if I ingested gluten. I would never do that but there are times I wonder if I have ever been glutened or not because I cannot tell. Six months after that my bloodwork showed my previously off-the-charts positive number to be negative. Same with the next bloodwork six months later. Am due for another check soon.

Recovery occurs at different rates for us all because we are all so individual. As I feel no different it is difficult to tell how much I have healed. It is a weird situation, alright.

Welcome here! So many folks here are extremely experienced and full of wisdom. We all learn from each other.

Thanks for sharing your experience, love2travel. It is a bit surreal to find all this going on within, with few outward signs, and certainly makes monitoring for glutening challenging! Good healing to you!

[ravenwoodglass]

If I have been off gluten for like 3 weeks, is that too long off gluten to get the biopsy? And do I go to a gastroenterologist?

Yes you would need to see a GI doctor for biopsy but any doctor can order the panel. However you do need to go back to eating gluten for a couple of months to get the best chance of an accurate test. If going back on gluten makes you very ill then you do have your answer. Let your doctor know if the diet has relieved your symptoms and let them know if the challenge brings them back. If your reaction to the challenge is severe some doctors will stop and challenge and give you your diagnosis. If you had positive blood work then it is up to you whether you want to regluten for an endo. False negatives are common with testing but false positives are not.

[CathleenAnna]

If I have been off gluten for like 3 weeks, is that too long off gluten to get the biopsy? And do I go to a gastroenterologist?

Janie, I had similar questions! My PCP instructed me to start gluten-free after the blood tests came back strongly positive. Right away, I felt better on the diet, so I couldn't fathom continuing to put gluten into my body. I was on the diet for about 4 weeks by the time I had the endoscopy. My gastroenterologist seemed concerned about accuracy, but then my results still showed significant damage to the intestine. It seems that it will take much longer than a few weeks to start healing my intestine.

In my case, I was committing to lifelong gluten-free based on the blood tests, regardless of the results of the biopsy. So, I hope you consult with a doctor you trust regarding the best route to take for you!

Good luck with your process!