Lymphocytic Colitis with Celiac

[CeliacPI]

My husband was diagnosed with Celiac in January 2025.  He has been on a gluten free diet since official endoscopy which confirmed Celiac.  He just recently had a colonoscopy where he was diagnosed with "Lymphocytic Colitis".  His Gastroenterologist said that Lymphocytic Colitis is also associated with Celiac Disease.  I have looked on this forum and don't see any mention of other people being diagnosed with this disease.  Can anyone tell me if they have also been diagnosed with this?  They also found "dysplasia" in the colon which is considered precancerous and therefore they need to do another colonoscopy using a special technique called chromoendoscopy which helps them find abnormalties in the lining of the colon.  I can see why having Celiac for 55 years without knowing it and eating gluten every day would likely not be kind to your intestines and colon.  I would think more people would have these types of issues.  Wondering if anyone else has dealt with this.  Appreciate any feedback and advice on how to manage.  

Thanks!

 

[trents]

@CeliacPI, I know this does not directly address your question but it is well-known that in the celiac population, intestinal diseases in general are statistically more common than they are in the general population - IBS, colitis, lymphoma, etc. 

[Scott Adams]

While lymphocytic colitis (LC) isn’t as frequently discussed as other celiac-related conditions, research does show a connection between the two, likely due to shared autoimmune mechanisms. Some people with celiac do develop microscopic colitis (including lymphocytic or collagenous types), so your husband isn’t alone in this. The finding of dysplasia adds another layer of complexity, but the good news is that chromoendoscopy is a highly effective tool for detecting and monitoring precancerous changes—early intervention makes a big difference. Since his celiac went undiagnosed for so long, it’s possible the prolonged inflammation contributed to these issues, which is why strict gluten-free adherence and follow-up care are crucial now. For managing LC, some find relief with anti-inflammatory medications (like budesonide) or dietary adjustments (low-fat, low-fiber, or dairy-free trials), but his gastroenterologist can tailor a plan. You might also seek out online support groups for microscopic colitis—they often share practical tips. 

[CeliacPI]

Yes, I've read that online but I was just surprised that no one has mentioned it on this forum specifically.  We have not had our follow up meeting with the Dr where I'm sure she will advise as to how he needs to deal with this ailment.  I have learned from past health issues - if you want to find the REAL truth - talk to someone living with the disease.  THEY will know way more than any doctor ever could.   

Thanks for responding. 

[CeliacPI]

Scott Adams/Trents - Thanks!  I will definitely do some more research.  I welcome any and all advice.  

[Scott Adams]

The topic has come up in the forum a lot:

https://www.celiac.com/search/?q=lymphocytic colitis&quick=1&type=forums_topic

and here are discussions with "colitis":

https://www.celiac.com/search/?&q=colitis&type=forums_topic&quick=1&search_and_or=and&sortby=relevancy

[Katerific]

I was diagnosed with microscopic colitis and celiac a couple of years ago.  The GI doctor prescribed a course of budesonide, which moderately helped until I tapered off.    After a lot of ups and downs over the course of 2 years, I am finally in microscopic colitis remission.  Since I am also diabetic, I was started on metformin and Jardiance.  Metformin by itself helped moderately.  I added Jardiance and I was much better.  I stopped the metformin and relapsed and when I added it back, I regained remission.  I think metformin and Jardiance helped my colitis because they reduce inflammation in the gut.  Metformin is known to favorably modulate the gut microbiome and reduce inflammatory cytokines.  Similarly, emerging evidence supports the anti-inflammatory properties of SGLT2 inhibitors like Jardiance.  Once I was on both, the diarrhea stopped completely, even though nothing else ever worked long-term.  There is a Facebook group that can be very informative and helpful.  Look for "Microscopic Colitis and Lymphocytic Colitis Support Group.  You will find that members of the Facebook group identify other pathways to remission of microscopic colitis.

[Oldturdle]

On 7/18/2025 at 5:28 PM, CeliacPI said:

My husband was diagnosed with Celiac in January 2025.  He has been on a gluten free diet since official endoscopy which confirmed Celiac.  He just recently had a colonoscopy where he was diagnosed with "Lymphocytic Colitis".  His Gastroenterologist said that Lymphocytic Colitis is also associated with Celiac Disease.  I have looked on this forum and don't see any mention of other people being diagnosed with this disease.  Can anyone tell me if they have also been diagnosed with this?  They also found "dysplasia" in the colon which is considered precancerous and therefore they need to do another colonoscopy using a special technique called chromoendoscopy which helps them find abnormalties in the lining of the colon.  I can see why having Celiac for 55 years without knowing it and eating gluten every day would likely not be kind to your intestines and colon.  I would think more people would have these types of issues.  Wondering if anyone elseno  has dealt with this.  Appreciate any feedback and advice on how to manage.  

Thanks!

 

I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago.  This past spring,  I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy.  I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis.  I was asked at that time if I was still experiencing the diarrhea, and when I said yes, I was prescribed an 8 week course of Budesonide, which included the weaning off phase.  Budesonide is a steroid, but it is allegedly specific for the bowel, and has very few systemic side effects.  I must say, I experienced no side effects, except a couple little spots of persistent psoriasis went away.  I have one week of treatment left, and other than one loose stool very early in treatment, I have had no further bowel issues.  I was told that 80 percent of people go into an extensive, or even permanent, remission after taking Budesonide.  During the colonoscopy, two polyps were removed, and one was precancerous.  I know that colon cancer risks are higher in people with Celiac disease, so it was recommended that I have another coloscopy in five years.

     Like your husband, I probably had untreated Celiac disease for years.  It makes one wonder if the chronic irritation and inflammation could lead to the development of microscopic lymphocytic colitis.  This disease is usually diagnosed in people over 50 years old, and occurs approximately in one out of every 1,000 people. 

      Incidentally, If your husband is prescribed Budesonide, it can be purchased significantly cheaper by using GoodRX.

[knitty kitty]

Do discuss this recent article with your doctors.  Thiamine Vitamin B 1 is important to intestinal health.  Thiamine deficiency can occur in Celiac Disease due to malabsorption.  Supplementing with a B Complex, Benfotiamine, and Vitamin D can help symptoms.  

Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages

https://pubmed.ncbi.nlm.nih.gov/39890689/#:~:text=Our mechanistic study revealed that,necessary to protect against colitis.

"Conclusion and implications: Our study provides evidence linking thiamine deficiency with proinflammatory macrophage activation and colitis aggravation, suggesting that monitoring thiamine status and adjusting thiamine intake is necessary to protect against colitis."

[Oldturdle]

Thanks, Knitty Kitty!  You seem so knowledgeable.  I have followed your other posts.  Actually, I have been supplementing with all of the B complex vitamins, as well as other recommended vitamins and minerals for over 50 years.  My urine is bright yellow after dosing, so I am pretty sure that I am absorbing enough of these supplements to be therapeutic.  

When I was still working as a nurse, we used to give high dose thiamine supplements to alcoholics going through withdrawal.  Alcoholism apparently caused a thiamine deficiency.

[knitty kitty]

Thank you, @Oldturdle,

I greatly appreciate that.  I've always been a curious kitty.  I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me.  It pleases me to be able to help others in the same boat.

Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly.  This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function.  Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state.  However, not all people present with all three symptoms.  Many (80%) don't get diagnosed until their autopsy.  

Alcohol has to be processed through the liver.  If there's insufficient thiamine, Alcoholic Fatty Liver develops.  In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body.  Alcohol also prevents absorption of calories from food and other nutrients.  

Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver.  However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity.  

In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food.  If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP.  For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP,  the "bitcoin" of energy in our bodies.  

Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome.  My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy,  because I didn't drink alcohol, although I had ataxia and an altered mental state.   Doctors don't think outside the box!  

I went home and took thiamine.  I had improvement in my symptoms within an hour.  High doses of thiamine are required to correct Thiamine deficiency.  Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs.  ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.).  And I've kept learning and sharing that knowledge to help others.  

It's wonderful you've been supplementing with vitamins so long!  Don't worry about the bright yellow urine.  That's excess Riboflavin B 2.  Interesting note, Riboflavin glows under black light!  Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing.  Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light.  Fun for Halloween.

I hope you feel better, @Oldturdle.  If I can be of further help anytime, you can send a personal message here.  Thanks for reading my posts. 

P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine.

Edited July 29 by knitty kitty
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