Villi flattened

[Jen1104]

Hey everyone,

I had an endoscopy and colonoscopy last Nov because of burning, pulsating stomach pain and other lovely colon issues.

I had already been gluten free for 6 months when this was done.  (I know, I know, I had no idea I had to keep eating gluten for the tests when I first started the diet).  The endoscope with magnifier showed some of my villi were flattened and that I had chronic inactive gastritis, but the dr did 5 biopsies for celiac and they were normal. 

I am confused about how the endoscope can actually SEE damage (flattened villi) but yet show nothing in the biopsies.

I'm sure being gluten free affected my results. (And unfortunately, I can't do a gluten challenge.  I have a VERY bad reaction to gluten-very painful burning nerve pain throughout most of my body, extreme anxiety, walking sideways, WEIRD!! And this was from eating 4 servings of gluten free processed food in a day!) 

My history is I've had muscle and nerve pain for 25 years along with pretty severe fatigue and brain fog.  The stomach problems came on in last 5+ years along with bad coughing, sore throat, burning tongue (reflux I guess) and hair loss in last year or two.

I've been strictly gluten free for 9-10 months and stomach pains are 80% better and just recently have had some relief in neuropathy and fatigue issues (I've had good hours, not days yet).  I'm hoping I'm on the right path for all my health issues.  My brother has had some stomach issues and bad neuropathy in his feet the last few years, and my mom also has unexplained neuropathy in legs and feet too but they are not really interested in getting tested.

I just wondered about the flattened villi with biopsies being fine and also if I have gluten sensitivity (and not celiac), can that cause flattened villi??

Thanks for reading and for your replies!

 

 

[kareng]

19 minutes ago, Jen1104 said:

Hey everyone,

I had an endoscopy and colonoscopy last Nov because of burning, pulsating stomach pain and other lovely colon issues.

I had already been gluten free for 6 months when this was done.  (I know, I know, I had no idea I had to keep eating gluten for the tests when I first started the diet).  The endoscope with magnifier showed some of my villi were flattened and that I had chronic inactive gastritis, but the dr did 5 biopsies for celiac and they were normal. 

I am confused about how the endoscope can actually SEE damage (flattened villi) but yet show nothing in the biopsies.

I'm sure being gluten free affected my results. (And unfortunately, I can't do a gluten challenge.  I have a VERY bad reaction to gluten-very painful burning nerve pain throughout most of my body, extreme anxiety, walking sideways, WEIRD!! And this was from eating 4 servings of gluten free processed food in a day!) 

My history is I've had muscle and nerve pain for 25 years along with pretty severe fatigue and brain fog.  The stomach problems came on in last 5+ years along with bad coughing, sore throat, burning tongue (reflux I guess) and hair loss in last year or two.

I've been strictly gluten free for 9-10 months and stomach pains are 80% better and just recently have had some relief in neuropathy and fatigue issues (I've had good hours, not days yet).  I'm hoping I'm on the right path for all my health issues.  My brother has had some stomach issues and bad neuropathy in his feet the last few years, and my mom also has unexplained neuropathy in legs and feet too but they are not really interested in getting tested.

I just wondered about the flattened villi with biopsies being fine and also if I have gluten sensitivity (and not celiac), can that cause flattened villi??

Thanks for reading and for your replies!

 

 

Did you have a Celiac blood test before going gluten-free?

 I think I would insist on talking to the doctor and say " why are my villi flat?  And why didn't you biopsy those areas? Because if it isn't Celiac, then we need to find out why they are flat.  " 

or I can come with you and say that for you!  Lol

[Jen1104]

Hey Kareng,

Yes, if you can come with me, that would be great!  Lol

Honestly, I've been treated so badly by some docs over the years I despise going to them, and half the time I forget what to say or ask. But I'm getting better at that!  I did ask my dr a few questions about the villi being flattened, he wasn't sure about an answer.  He said it may be celiac and he just missed the damage with the biopsies--or I could not have it.  Real helpful.  I think he said Crohn's could cause villi flattening sometimes but my colonoscopy was fine.  I do need to ask dr if he biopsied the flattened areas--or not--but I got a copy of the endoscopy results and nowhere in report does it say seeing flattened villi so there may not be any record of it. (Basically dr just told me some villi were flattened after waking up from endoscopy)

And, unfortunately I was not aware of the blood test when I first heard about gluten and decided to try going gluten free.

Very frustrating.  I may never know.... but thanks for response.

[cyclinglady]

If his scope could visually see The flattened villi, then his scope might be capable of taking photos.  I had a recent endoscopy and my doctor handed me a photo during recovery.  Consider requesting a copy of your medical file.  Maybe he did take photos or maybe he mixed you up with another patient!  

It sounds like you are responding the the gluten free diet.  If I felt 80% better, I would stay the course.  Give yourself another six months.  

Crohn’s?  My niece was diagnosed with Crohn’s and it was not found in her colon.  It was out of reach of both scopes.  A pill camera found the damage.  

Research gluten ataxia.  I am not a doctor, but you mentioned walking sideways.  That is weird!  

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[psoy]

2 hours ago, Jen1104 said:

Hey Kareng,

Yes, if you can come with me, that would be great!  Lol

Honestly, I've been treated so badly by some docs over the years I despise going to them, and half the time I forget what to say or ask. But I'm getting better at that!  I did ask my dr a few questions about the villi being flattened, he wasn't sure about an answer.  He said it may be celiac and he just missed the damage with the biopsies--or I could not have it.  Real helpful.  I think he said Crohn's could cause villi flattening sometimes but my colonoscopy was fine.  I do need to ask dr if he biopsied the flattened areas--or not--but I got a copy of the endoscopy results and nowhere in report does it say seeing flattened villi so there may not be any record of it. (Basically dr just told me some villi were flattened after waking up from endoscopy)

And, unfortunately I was not aware of the blood test when I first heard about gluten and decided to try going gluten free.

Very frustrating.  I may never know.... but thanks for response.

It is disgusting how we get treated by medical professionals! Someone well has to abdicate for us!

[Jen1104]

Cyclinglady-

Thanks for the suggestion about seeing if there is a pic from my endoscopy.  Good idea! I remember getting pics but I'm pretty sure it was just from my colonoscopy. I'll have to dig those up.

Yep, I think I may have gluten ataxia. That's scary that if it goes on long enough it could be permanent.  I'm hoping I keep getting better being gluten free, time will tell!

That's interesting about your niece's crohn's diagnosis.  Just goes to show that scopes don't always catch everything.  I guess no test is 100%.

 

Psoy-

Yep, it's wrong how we are sometimes treated by the medical community.  I'd be happy if they would just listen and seem interested in trying to help me, instead of pushing another pill to try to cover up yet another symptom.  Not to mention their insensitive and sometimes downright rude comments! I could start a new thread on that alone.

 

 

 

 

[Carolina]

My daughter has Celiac and Crohn's, diagnosed at the same time. It is true that Crohn's can cause villi blunting also. Crohn's can be anywhere from mouth to rectum. Hers was diagnosed through colonoscopy (hers is present in large intestine only) and she also had an MRE to rule out active disease in the small intestine.

[KathK]

I'm so sorry about your daughter, but with vigilance, it's ok. I also have Crohn's and Celiac -- wicked combination. Yes, villi is wiped out, flattened, etc. My reaction to getting glutened is really bad with pain, vomiting, diarrhea and fatigue, so much that it's been a trip to the ER when it's happened. Then it sets off the Crohn's and it takes about a week to recover, 2-3 days of pain/nausea meds. She will need to be extremely careful. Eating Gluten-Free usually means lots of vegs, fruits, nuts  and salads, but if you have Crohn's damage, all that roughage can be hard on digestive system. I've gone to pressure cooking all vegs, and can handle iceberg lettuce, but not the "good"lettuces. 

[Carolina]

11 minutes ago, KathK said:

I'm so sorry about your daughter, but with vigilance, it's ok. I also have Crohn's and Celiac -- wicked combination. Yes, villi is wiped out, flattened, etc. My reaction to getting glutened is really bad with pain, vomiting, diarrhea and fatigue, so much that it's been a trip to the ER when it's happened. Then it sets off the Crohn's and it takes about a week to recover, 2-3 days of pain/nausea meds. She will need to be extremely careful. Eating Gluten-Free usually means lots of vegs, fruits, nuts  and salads, but if you have Crohn's damage, all that roughage can be hard on digestive system. I've gone to pressure cooking all vegs, and can handle iceberg lettuce, but not the "good"lettuces. 

Thanks! She seems to be atypical at every turn. She is a 'silent celiac' and has no reaction to different foods, only ill during Crohn's flare-ups that led to diagnosis. It's only been 6 months but she's been great since taking mesalamine and going gluten-free. Her Crohn's labs have all normalized and her Celiac dropped significantly but not completely normal. It's a blessing and a curse to not react to gluten it seems. She's gained 9lbs and grown 3" since diagnosed, she's always been tall but she was very thin. Her coloring is better and she looks so much healthier now.