Blunted villi almost 4 year after diagnosis

[Raquel2021]

Hello everyone ,

Hoping someone will have an answer for me.  I have had my celiac symptoms continue after being on a gluten-free diet. Was diagnosed in December of 2020 and followed a strict gluten free diet. I barely eat out and I am very strict. I even went dairy free for almost 2 years. I recently had and endoscopy with biopcies taken that revealed blunted villi. My celiac antibodies were also checked and they are within normal range. They were initially very high. The gastroenterologist I am seeing says I am in remission and that I don't have to worry about celiac being the cause of my symptoms.  I have read a lot about this condition and if the villi is still blunted that means I have not healed.  I have anemia that does not go away. I have tried to take B complex and vitamin D any vitamins would cause me severe severe insomnia.  So I cannot trade sleep for vitamins.  I know that is a common suggestion on this forum.  I am very confused.  Is this dr not knowledgeable? What am I missing? I thought my gut would have healed by now. I am so careful with the diet. He also mentioned I might have refractory celiac but then did not seem be worried about it. My symptoms are burning pain under the left ribcage. Fatigue and weight loss. I also eat lost of vegetables and fruits. I have lost a total of 20 pounds since I went gluten free and cannot put it back on. I was not overweight. 

[RMJ]

Four years after I started my gluten free diet I still had “focal mild villous blunting.” One of the four antibodies tested was also still a little high (all four had been high at first). Unfortunately, I wasn’t able to have a biopsy prior to going gluten free so don’t know if the blunting was an improvement or not.  

Did you have a biopsy when diagnosed? Is blunting an improvement? At least you have villi and not villous atrophy. 

Hopefully your gastroenterologist or another doctor will try to find the cause of your current symptoms, even if they don’t think it is celiac.

 

[Raquel2021]

On 9/27/2024 at 8:25 PM, RMJ said:

Four years after I started my gluten free diet I still had “focal mild villous blunting.” One of the four antibodies tested was also still a little high (all four had been high at first). Unfortunately, I wasn’t able to have a biopsy prior to going gluten free so don’t know if the blunting was an improvement or not.  

Did you have a biopsy when diagnosed? Is blunting an improvement? At least you have villi and not villous atrophy. 

Hopefully your gastroenterologist or another doctor will try to find the cause of your current symptoms, even if they don’t think it is celiac.

 

Thanks so much for replying.  I truly appreciate it. I was diagnosed in December of 2020 after having an endoscopy with biopcies. The biopcies showed the same thing.  Mild blunting of the villi and it was also showing lymphocytes.  This time is still showing mild blunting and no lymphocytes.  No sure If that would be an improvement. The thing I improved on gluten-free diet but I am still experiencing symptoms.  I have read that some adults might never fully recover their villi. I was truly hoping that would not be me. My antibodies are now within normal range. Just wondering if you have had any other endoscopy after the 4 year mark and how are you feeling now. Just looking for hope. Thanks

[RMJ]

I only had the one endoscopy.  My GI wasn’t worried that I still had blunted villi. My antibody levels are now normal. I never had specific symptoms, although I generally feel better now, less fatigue. 

I think not having  excess lymphocytes any more would be an improvement.

Since you still have symptoms I hope your doctors will still look for a cause.

 

[Raquel2021]

13 hours ago, RMJ said:

I only had the one endoscopy.  My GI wasn’t worried that I still had blunted villi. My antibody levels are now normal. I never had specific symptoms, although I generally feel better now, less fatigue. 

I think not having  excess lymphocytes any more would be an improvement.

Since you still have symptoms I hope your doctors will still look for a cause.

 

Thanks again for the reply.  So I guess doctors are not worried about the blunted villi? Is it not the point of the gluten-free diet to promote the healing of the villi so that we  can absorb nutrients? Thanks. Extreme fatigue is one of my symptoms.  I have exercise intolerance. 

[RMJ]

3 minutes ago, Raquel2021 said:

Thanks again for the reply.  So I guess doctors are not worried about the blunted villi? Is it not the point of the gluten-free diet to promote the healing of the villi so that we  can absorb nutrients? Thanks. Extreme fatigue is one of my symptoms.  I have exercise intolerance. 

Many doctors don’t even do routine followup endoscopies any more. Was yours a routine followup or due to continuing symptoms? 

I agree that full healing of villi and thus absorption of nutrients would be ideal.  The term “blunted villi” doesn’t say how blunted, so unless the pathology report said something about villous height to crypt depth ratio (mine didn’t) one can’t tell if they are less blunted (partially healed).

[Helen Robertson]

I was diagnosed in 2004 via biopsy and had a repeat endoscopy in 2006.  At that time my villi had grown back and I was fine.  Most recently I’ve been having gluten symptoms but antibody blood tests were normal.  I have Vitamin D, Vitamin B12 and folate deficiency’s, however, and am taking copious amounts of vitamins to fix that problem.  I must admit, the depression and exhaustion is much better, although taking the vitamins has been problematic since I regularly choke on them.  The endoscopy revealed that I have blunted villi but the doctor said that since the biopsies were normal, that my stomach is fine.  Really?  Is it really?  Why would he notate that the villi were blunted - whatever that means - if it’s normal?  I’m still experiencing acid reflux and GERD, but are they related to blunted villi or taking too much Omeprazole?  I am uber careful to the point that my kitchen is divided in two - with my husband having his own gluten food cabinet, toaster and microwave.  Would appreciate thoughts.

[Raquel2021]

2 hours ago, RMJ said:

Many doctors don’t even do routine followup endoscopies any more. Was yours a routine followup or due to continuing symptoms? 

I agree that full healing of villi and thus absorption of nutrients would be ideal.  The term “blunted villi” doesn’t say how blunted, so unless the pathology report said something about villous height to crypt depth ratio (mine didn’t) one can’t tell if they are less blunted (partially healed).

Thanks again. My first endoscopy said mild blunting of the villi. The recent one said the same thing mild blunting of the villi. I went back to the GI because eventhough my symptoms had improved I am still suffering from a lot of them. I had read on this forum about people feeling great again and that never happened to me in the 4 years of gluten-free diet. I have also read articles here about some people never fully recover.

[Raquel2021]

38 minutes ago, Helen Robertson said:

I was diagnosed in 2004 via biopsy and had a repeat endoscopy in 2006.  At that time my villi had grown back and I was fine.  Most recently I’ve been having gluten symptoms but antibody blood tests were normal.  I have Vitamin D, Vitamin B12 and folate deficiency’s, however, and am taking copious amounts of vitamins to fix that problem.  I must admit, the depression and exhaustion is much better, although taking the vitamins has been problematic since I regularly choke on them.  The endoscopy revealed that I have blunted villi but the doctor said that since the biopsies were normal, that my stomach is fine.  Really?  Is it really?  Why would he notate that the villi were blunted - whatever that means - if it’s normal?  I’m still experiencing acid reflux and GERD, but are they related to blunted villi or taking too much Omeprazole?  I am uber careful to the point that my kitchen is divided in two - with my husband having his own gluten food cabinet, toaster and microwave.  Would appreciate thoughts.

Exactly my thoughts.  Having blunting of the villi means you have not completely healed the small intestine. It means you still have some damage.  We need normal villi to absorb nutrients properly.  From what I have heard your bot supposed to take Omeprazole indefinitely as this can also cause the body not to absorb nutrients.  It is interesting you had normal villi and now you are back to blunting. 

[Helen Robertson]

Yes, when I learned of the Omeprazole side effects I stopped it immediately and experienced extreme acid rebound, but between Tums and Famodidine, I stuck it out.  But I’m sure that the vitamin deficiencies I experienced were caused by taking this medication for almost a year.  And could it be responsible for the blunted villi?  Who knows.  The endoscopy also showed that I have an irritated stomach (again, whatever that means) but biopsies revealed “mild” irritation.  I’m hoping that with strict Gluten-free diet and mild foods that will repair on its own.  Not sure. And here I thought all you had to do is go gluten free and that would solve the problem.  I’m just sad that my GI doc who diagnosed me has retired.  My new GI doc is quite knowledgable, but extremely busy and I can’t get in to see him before November.  Unless they reschedule me again and push it out.

[Raquel2021]

13 minutes ago, Helen Robertson said:

Yes, when I learned of the Omeprazole side effects I stopped it immediately and experienced extreme acid rebound, but between Tums and Famodidine, I stuck it out.  But I’m sure that the vitamin deficiencies I experienced were caused by taking this medication for almost a year.  And could it be responsible for the blunted villi?  Who knows.  The endoscopy also showed that I have an irritated stomach (again, whatever that means) but biopsies revealed “mild” irritation.  I’m hoping that with strict Gluten-free diet and mild foods that will repair on its own.  Not sure. And here I thought all you had to do is go gluten free and that would solve the problem.  I’m just sad that my GI doc who diagnosed me has retired.  My new GI doc is quite knowledgable, but extremely busy and I can’t get in to see him before November.  Unless they reschedule me again and push it out.

Same here. Looking for answers.  My endoscopy also showed chronic gastritis. I hope you find some answers.  Let.me know if you.

[trents]

Helen, you may know this already but your post above was confusing in this regard. Blunted villi would refer to what is found by endoscopy and biopsy of the small bowel, not the stomach. And to say that the biopsy was normal despite having blunted villi is a contradiction unless, that is, the biopsy referred to was of the stomach and not of the small bowel. 

Cudos for weaning yourself off of the PPI. I did the same thing but it took me a full year. It was a real challenge because of the rebound. Here are some things that are documented as causing blunted villi besides celiac disease: https://www.verywellhealth.com/villous-atrophy-562583 .

In regard to the GERD, I wonder if you are suffering from MCAS/histamine intolerance. There is also the possibility in all this that gluten has crept back into your diet in some unexpected way. Food companies can and do change formulations such that what was once gluten free may cease to be.

 

 

[Raquel2021]

1 hour ago, trents said:

Helen, you may know this already but your post above was confusing in this regard. Blunted villi would refer to what is found by endoscopy and biopsy of the small bowel, not the stomach. And to say that the biopsy was normal despite having blunted villi is a contradiction unless, that is, the biopsy referred to was of the stomach and not of the small bowel. 

Cudos for weaning yourself off of the PPI. I did the same thing but it took me a full year. It was a real challenge because of the rebound. Here are some things that are documented as causing blunted villi besides celiac disease: https://www.verywellhealth.com/villous-atrophy-562583 .

In regard to the GERD, I wonder if you are suffering from MCAS/histamine intolerance. There is also the possibility in all this that gluten has crept back into your diet in some unexpected way. Food companies can and do change formulations such that what was once gluten free may cease to be.

 

 

My GI told me the same thing I have blunted villi but because my antibodies are now normal I am in remission of the celiac disease.  This is why I am so confused. This is seem to be contradicting.  This was the reason for my post. He did not seem to be worried about th3 damage of the villi. He said that because my antibodies are good I am good now. Meanwhile I am still experiencing symptoms of malabsorption. 

[RMJ]

The antibody tests used to diagnose celiac disease are NOT approved by the FDA to evaluate healing on a gluten free diet after diagnosis, although they are widely used that way. Here is a scientific  paper that shows that the antibody tests don’t do a great job detecting villous atrophy on a gluten free diet.

Tests for Serum Transglutaminase and Endomysial Antibodies Do Not Detect Most Patients With Celiac Disease and Persistent Villous Atrophy on Gluten-free Diets: a Meta-analysis

When the antibodies were positive there was an excellent chance that the villi were still atrophied, but many negative tests missed atrophied villi.

The authors try to explain why it could be due to gluten contamination in the diet even with negative antibodies.  You might try the ultra strict “Fasano diet” to see if symptoms improve, especially if you eat much in the way of processed foods.

Gluten Contamination Elimination Diet

[Wheatwacked]

On 9/29/2024 at 3:01 PM, Helen Robertson said:

I thought all you had to do is go gluten free and that would solve the problem.  

On 9/29/2024 at 1:25 PM, Helen Robertson said:

I must admit, the depression and exhaustion is much better, although taking the vitamins has been problematic since I regularly choke on them.

That's the vitamin D working for you.  Pipingrock.com has Liquid Vitamin D3, 5000 IU, $3.50 118 Servings Per Container.  double the dose for 10,000 IU.

 

Between malabsorption and avoiding foods and losing the fortififications required in gluten foods (what? our american diet is deficient? There is a reason governments require fortification.

Gluten free will stop ongoing damage but you have to replete your vitamin deficiencies to heal.  Top four:

• vitimind D comprised immune system, mental health, bone health
• thiamine paripheral neurapathy, gastrointestinal beriberi
• choline fat digestion, cell membrane, homocysteine, nerve transmission. Increasing choline helps with folate deficiency.
• iodine.  brain fog, muscle tone, poor healing, skin, hair, nails.  Since 1970 the average intake of iodine in the US has gone down 50%.  We've reached the bottom of the barrel.

Too many doctors just say don't eat gluten goodbye and goodluck.

Edited October 1, 2024 by Wheatwacked

[jeema]

@Raquel2021 My understanding is that incomplete healing by itself isn't entirely uncommon, especially in adults.  For example see here: https://journals.lww.com/ajg/abstract/2011/01000/morphometric_evaluation_of_duodenal_biopsies_in.23.aspx

However if you're saying that your symptoms have also not improved much since the beginning of the diet, and that you are still not able to put on weight, I would consider getting a second opinion if it were me.

Small intestinal bacterial overgrowth (which is somewhat common in people with celiac) can also cause villi blunting from what I read online.

[Raquel2021]

Thanks so much.  I am getting a second opinion.