Do anti-diarrheal medications help during recovery?

[Geriatric Newby Caregiver]

Just wondering.  My wife has been gluten free now for just about two months.  We know that that is not very long at all in the realm of recovery.  But what we are wondering is whether or not it may help with her constant, totally watery diarrhea if she were to try anti-diarrheal medications like Immodium or Lomotil.

Prior to her diagnosis, when the doctors were still suspecting possible carcinoid tumors due to a high chromo-granin test that was obtained during the time that she was also taking proton-pump inhibitors for a little acid reflux, the anti-diarrheals had no effect at all!  But she was still consuming gluten in sometimes high quantities.   Now that the gluten is gone we have started wondering whether the drugs might help.  

We are hoping only for a few fewer and less-frequent stools.  She regularly has "blow-outs" 10-15 times a day.  Even more when she got accidentally glutened by over-the-counter meds that said "contains wheat" and foods that were cross-contaminated through shared processing equipment.

She is also taking "Align" probiotics regularly and we are trying to keep up on simple fiber.  Lentils were too much.  Applesauce is better.  Although anything--everything, including plain water, will trigger a dumping response within a few minutes.   Sometimes we see foods that stay in her system for a few hours.  But other times, the transit time is measured in minutes. 

[knitty kitty]

Are you aware that "Align" probiotics contain sodium caseinate, a form of casein, a protein in dairy products, to which your wife may be reacting?

Casein has been shown to promote continuing inflammation in the digestive tract. 

Here's an informative article....

https://www.healthline.com/nutrition/sodium-caseinate

Perhaps stopping the probiotics to see what effect it has on the diarrhea would be beneficial.

[Scott Adams]

I don't see any reason not to use Imodium during recovery, if diarrhea is still an issue. It does seem strange that she is still having diarrhea after two months gluten-free. Are you sure her diet is 100% gluten-free? Eating out can be a big source of contamination:

 

[Geriatric Newby Caregiver]

1 hour ago, Scott Adams said:

I don't see any reason not to use Imodium during recovery, if diarrhea is still an issue. It does seem strange that she is still having diarrhea after two months gluten-free. Are you sure her diet is 100% gluten-free? Eating out can be a big source of contamination:

 

We are 100% sure. Except when the Melatonin she was using had wheat and the rice noodles that said gluten free 7 times were found to have been processed on shared equipment.

We have read the article. Very helpful, thank you. And much along the same lines as the hospital nutrtionist advised us. We clot rid of everything on out kitchen that wasn't glass or stainless steel.  Also, toaster, cooling racks, mixers, plastic bowls, plastic and wooden spoons, non-stick cookware, pancake griddle, waffle iron, baking pans, cookie sheets, drawer organizers, shelf paper, canisters and storage bins. Tupperware--I think we were pretty thorough. 

We had tried Imodium before the diagnosis (and Lomotil in the hospital) to no avail. She tried Imodium fir the past two days, and all she seemed to get was a lot more pain.

The only thing that we know that works is fasting. Even sins of water trigger dumping. Since she is on TPN, she can sort of get away with it. We may need to take her back to the ER soon. If we do, it would be the sixth time since Dec. 20.

We have both been gluten free since January 25th. 

[Wheatwacked]

26 minutes ago, Geriatric Newby Caregiver said:

We have both been gluten free since January 25th. 

How are you feeling on the gluten free diet?

[Scott Adams]

Perhaps consider this diet for a while, and/or a low FODMAP diet, and if nothing is working her doctors need to consider Refractory Celiac Disease, which a very small percentage of celiacs have:

 

 

[GF-Cate]

On 3/31/2022 at 4:14 PM, Geriatric Newby Caregiver said:

She is also taking "Align" probiotics regularly 

Though they are labeled gluten-free, she may need certified gluten-free products and/or dairy-free especially while she is working towards the healing process. Garden of Life is one brand of probiotics that are dairy & soy free and certified gluten-free. 

On 3/31/2022 at 4:14 PM, Geriatric Newby Caregiver said:

we are trying to keep up on simple fiber.  Lentils were too much.  

Lentils are very often cross-contaminated with wheat and other grains due to how they are grown / stored / processed. There are several threads in this forum that have more info about the cross-contamination issues with lentils (just search "lentils").

Goya brand is labeled as "may contain soybean and wheat"; Thrive brand is labeled "lentil crops are sometimes rotated with wheat, which may cause cross-contamination"; O Organics labeled "may contain wheat"...and the list goes on.

There are some brands labeled certified gluten-free, but given the farming/storage/processing practices, I gave them up because they were definitely giving me issues & seemed too risky to be worth it for me.

When I was dealing with figuring out lingering/tricky sources of gluten in my diet & medicine cabinet, I paid out-of-pocket for a remote consultation with nurse & celiac specialist Nadine Grzeskowiak ("The Gluten Free RN" ), which I found extremely valuable. She also has a free podcast series (linked from her website) that is a wealth of information.  https://glutenfreern.com/

[Geriatric Newby Caregiver]

Thanks for the info about lentils. It makes sense. And for the tip about the Gluten Free RN.  This will be very helpful!

[Geriatric Newby Caregiver]

On 4/1/2022 at 6:15 PM, Wheatwacked said:

How are you feeling on the gluten free diet?

I feel great. But I am only tge caregiver. She still has severe diarrhea (10-15 time a day. Sometimes as much as 25) which is causing dehydration and electrolyte imbalance problems. We are now on her sixth hospitalization to restore fluids and potassium.

Just today they started her on a new medication, Cholestyramine, which can be used to bind excess bile and decrease the diarrhea.  We are waiting for the verdict on that.  Stay tuned.

We have also just read about Budesonide, a steroid that in the correct form has been used to help both Celiacs in accidental glutening episodes and with unresolved diarrhea. 

We are very much looking forward to our first appointment (May 10th) with a new GI doctor who is actually a specialist in Celiac Disease and Motility. I keep calling every morning to check for a cancelation that would open up a spot for her.

 

 

[I.M.Celiac]

On 4/1/2022 at 5:48 PM, Geriatric Newby Caregiver said:

We are 100% sure. Except when the Melatonin she was using had wheat and the rice noodles that said gluten free 7 times were found to have been processed on shared equipment.

We have read the article. Very helpful, thank you. And much along the same lines as the hospital nutrtionist advised us. We clot rid of everything on out kitchen that wasn't glass or stainless steel.  Also, toaster, cooling racks, mixers, plastic bowls, plastic and wooden spoons, non-stick cookware, pancake griddle, waffle iron, baking pans, cookie sheets, drawer organizers, shelf paper, canisters and storage bins. Tupperware--I think we were pretty thorough. 

We had tried Imodium before the diagnosis (and Lomotil in the hospital) to no avail. She tried Imodium fir the past two days, and all she seemed to get was a lot more pain.

The only thing that we know that works is fasting. Even sins of water trigger dumping. Since she is on TPN, she can sort of get away with it. We may need to take her back to the ER soon. If we do, it would be the sixth time since Dec. 20.

We have both been gluten free since January 25th. 

@Geriatric Newby Caregiver

I am SO sorry you are having to go through this. My heart breaks reading what you are going through.

My father was similarly ill last year. He was never diagnosed with Celiac but he had the same rate of diarrhea you described above for weeks after a heart bypass. He was wasting away in front of us.

I was convinced he had Celiac as he’s my genetic relative. 

The heart doctor was no help. Anti-diarrheals didn’t really work.
Turns out, he had caught C.diff during his hospital stay. (Officially called, “clostridium difficile” if you want to google.) It’s a tough customer.

We had to ask another doctor to test for C.Diff and it came back positive. A particular antibiotic combo cleared it up. He was able to regain weight and eat normally again. Huge relief. 
 

Perhaps don’t mention a stranger on the internet thought your partner should get tested for C.Diff. 
But a person can have Celiac and get C.Diff at the same time. And hospitals are breeding grounds for C.Diff. 
Here’s a link for the doctor:

https://celiac.org/about-the-foundation/featured-news/2018/01/risk-clostridium-difficile-infection-patients-celiac-disease/

So your doctor may agree to run the test if you ask for it?

Best of luck to you both. 
You are going through an intense time.  
 

[Geriatric Newby Caregiver]

She has been tested for c.diff at least three times. They just did another culture to see whether any other kind of infection is going on. 

In addition to the Celiac disease (in the small intestine)  there is something going on to cause inflammation in the colon as well, which has shown up in both a recent PET scan and CT scan. Just in case is might help, they have started a course of another antibiotic, to see what it does.

We have our first appointment with a Celiac and Motility specialist at Stanford on May 10th.  In the meantime. She is going to try giving her digestive system a rest, and rely almost totally on the IV nutrition for a week.  She is not absorbing much at all from what goes in her mouth anyway. (This was suggested by several doctors and nurses, though not ordered by any of them.)

To help with the dehydration, (the TPN provides some fluids, but not enough) they will set up scheduled fluid infusions at an infusion center. That will hopefully keep her out of the hospital until May. Then we will see what the Celiac Specialist has to say. I call every day to see if a cancelation has opened up an earlier appointment for her.

And we pray.

Thanks for your support and encouragement. 

 

[Cadge]

On 4/2/2022 at 12:15 AM, Scott Adams said:

I don't see any reason not to use Imodium during recovery, if diarrhea is still an issue. It does seem strange that she is still having diarrhea after two months gluten-free. Are you sure her diet is 100% gluten-free? Eating out can be a big source of contamination:

 

Scott I was surprised to read your comment that you feel it strange that after 2 months being gluten-free this lady still has diarrhea.  I have lived for 50 years with IBS-D and was diagnosed coeliac in September 2020 from a blood test.  I have been gluten free now for 18 months and have yet to have a normal formed movement.  I live on loperamide taking at least 1 tablet daily.  CoeliacUK has told me it can take up to 2 years for gluten to leave the body.  In my case this is probably exaggerated by the problem of the IBS and almost certainly a miss diagnosis back in the early 2000’s.  I don’t believe I ingest gluten now as I read all labels carefully and am very aware of hidden gluten.  I feel my problem is compounded by the IBS-D which hasn’t gone away with the coeliac.  Could this be a similar situation for the lady having so much trouble with diarrhea?  Like her I was having 10-12 blowouts daily, often immediately after eating when it would not be possible that the food had reached my lower colon.  Your thoughts will be gratefully appreciated.

[cristiana]

Hello All

There's some really good advice here.

Just something to add.  I have IBS-D as well as coeliac.  I was diagnosed with coeliac disease in 2013.  Just before Covid hit, as I was experiencing diarrhea and discomfort again, my consultant did an endoscopy - clear - then specifically tested me for something called Microscopic Colitis during a colonoscopy.  It turns out I don't have it, so therefore he concluded I must have IBS.  

It would be good to have the tests for Microscopic Colitis if this diarrhea persists,  as this can be the cause of watery diarrhea.  The good news is it can be successfully treated.

Cristiana

 

"Microscopic colitis is an inflammation of the large intestine (colon) that causes persistent watery diarrhea. The disorder gets its name from the fact that it's necessary to examine colon tissue under a microscope to identify it, since the tissue may appear normal with a colonoscopy or flexible sigmoidoscopy."

https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/symptoms-causes/syc-20351478#:~:text=Microscopic colitis is an inflammation,a colonoscopy or flexible sigmoidoscopy.

[trents]

6 hours ago, Cadge said:

Scott I was surprised to read your comment that you feel it strange that after 2 months being gluten-free this lady still has diarrhea.  I have lived for 50 years with IBS-D and was diagnosed coeliac in September 2020 from a blood test.  I have been gluten free now for 18 months and have yet to have a normal formed movement.  I live on loperamide taking at least 1 tablet daily.  CoeliacUK has told me it can take up to 2 years for gluten to leave the body.  In my case this is probably exaggerated by the problem of the IBS and almost certainly a miss diagnosis back in the early 2000’s.  I don’t believe I ingest gluten now as I read all labels carefully and am very aware of hidden gluten.  I feel my problem is compounded by the IBS-D which hasn’t gone away with the coeliac.  Could this be a similar situation for the lady having so much trouble with diarrhea?  Like her I was having 10-12 blowouts daily, often immediately after eating when it would not be possible that the food had reached my lower colon.  Your thoughts will be gratefully appreciated.

Christiana gives good advice.

It shouldn't take two years for "gluten to leave" your body. What takes two years is the complete healing of the villi damaged by all those years of gluten consumption during your previous to diagnosis.

Also, have you considered the possibility that your continuing problems are being caused by another food intolerance such as to oats (even gluten free oats) or dairy or eggs? These are common among celiacs. There are some medications that also cause villi blunting.

Edited April 7, 2022 by trents

[knitty kitty]

Chronic diarrhea can be a symptom of vitamin deficiencies.  

Vitamin B12 deficiency can cause diarrhea and even brain health changes before a deficiency can be detected in a blood test.

https://www.nhlbi.nih.gov/health/anemia/vitamin-b12-deficiency-anemia

And...

Diarrhea and novel dietary factors emerge as predictors of serum vitamin B12 in Panamanian children

https://pubmed.ncbi.nlm.nih.gov/21560464/

 

Vitamin C deficiency can cause diarrhea...

Irritable bowel syndrome leading to scurvy from a severely restricted diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7549947/#!po=4.16667

 

It's rare to have a deficiency in just one vitamin.  There can be multiple deficiencies causing diarrhea....

Functional abdominal pain causing Scurvy, Pellagra, and Hypovitaminosis A

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976101/

Supplementing with B Complex, Vitamin C, the four fat soluble vitamins (A, D, E, and K) and minerals like magnesium, iron, zinc, and calcium will help your body heal and function properly.

[Scott Adams]

10 hours ago, Cadge said:

Scott I was surprised to read your comment that you feel it strange that after 2 months being gluten-free this lady still has diarrhea.  I have lived for 50 years with IBS-D and was diagnosed coeliac in September 2020 from a blood test.  I have been gluten free now for 18 months and have yet to have a normal formed movement.  I live on loperamide taking at least 1 tablet daily.  CoeliacUK has told me it can take up to 2 years for gluten to leave the body.  In my case this is probably exaggerated by the problem of the IBS and almost certainly a miss diagnosis back in the early 2000’s.  I don’t believe I ingest gluten now as I read all labels carefully and am very aware of hidden gluten.  I feel my problem is compounded by the IBS-D which hasn’t gone away with the coeliac.  Could this be a similar situation for the lady having so much trouble with diarrhea?  Like her I was having 10-12 blowouts daily, often immediately after eating when it would not be possible that the food had reached my lower colon.  Your thoughts will be gratefully appreciated.

I agree that the average time to heal has been cited as 2 years in at least one study, and agree with @cristiana that this is usually based on how severe a person's case of villous atrophy is upon diagnosis, however, after many years of experience I've also seen that most people do not fully understand what is required of them to be 100% gluten-free. For example, they may continue eating out in restaurants, take meds or supplements that contain gluten, or simply cheat on the diet (which ~25% of celiacs do), all of which can cause many celiacs to face a much prolonged recovery time, and some may never fully recover due to these dietary lapses.

For most people, but not everyone, they should see severe symptom relief, especially chronic diarrhea, diminish greatly within a few weeks of starting a 100% gluten-free diet--which is easier said than done. Many doctors are still not defining exactly what is entailed with going gluten-free, and we see examples of this here time and time again by those who post, which is why my first instinct for those with ongoing severe symptoms is to share this article (which does include tips for those with ongoing symptoms):

 

[Geriatric Newby Caregiver]

Updates since April:

My wife has had no remission of symptoms with a gluten free diet alone. But we did switch to a new GI doctor who is a Celiac and Motility specialist at Stanford. She was skeptical of the diagnosis of Celiac Disease because she has not had any Celiac patients on TPN and the only evidence was the EGD showing celiac sprue. So, enzyme and genetic tests were ordered. Also MRI, Capsule Endoscopy and Double Balloon Enteroscopy.  

The end result? We still are not sure. The villi are absent throughout the full length of the small bowel and both the small bowel and the colon are radically inflamed. Not all the pathology reports are back, but since the testing is done, they have started her on prednisone to put the brakes on the inflammation.

That it did!

Abdominal pain has decreased, as also the frequency of diarrhea (from 15 or more daily to 5 or 6).The stool has also changed from tea-stained water to something more like baby food. 

Appetite and the ability to drink water have also improved greatly. Before the steroids she could only tolerate sips of water with medications. More than 1 or 2 ounces would trigger nausea and a dumping episode. Now she eats and drinks about as much as a small child.

Since late March, she has had twice weekly hydration infusions that have kept her from returning to the hospital after a week of being home with dehydration. We continue with the hydration and TPN until we see major changes in her lab reports and weight.

Meanwhile, we wait for a few appointments next week. One possibility that needs exploring is microscopic colitis which may be caused by reactions to medications. The best experts are all still scratching their heads, saying that it is not like anything that they have customarily seen. And what they are calling "differential diagnoses" -- more than just one thing.

 

[RMJ]

I’m very glad to hear your wife is doing better with prednisone,  even if the doctors don’t have a clear diagnosis.  Thanks for the update!

[LCAnacortes]

So glad to hear that your wife is getting better. What an awful thing to go through. You are a wonderful caregiver to try to find ways to help her. She is lucky to have you!

[LCAnacortes]

I had explosive, uncontrolled diarrhea too. Luckily I made it to the bathroom most of the time. I have been gluten free since the beginning of May but I still have issues once in a while.  I am suspecting milk/dairy might be an issue. Oats can be a problem too.  And supplements have helped. Keeping a diary of what she is eating would be good - that might help identify other food problems. I'm going to get a food sensitivity blood test too. 

[Wheatwacked]

That is really great news! Have they considered Choline Deficiency? Your other doctors blew you off, but have these guys adressed it?

I have been on prednisone since 2012, no regrets. 

[Geriatric Newby Caregiver]

On 7/8/2022 at 8:39 PM, Wheatwacked said:

That is really great news! Have they considered Choline Deficiency? Your other doctors blew you off, but have these guys adressed it?

I have been on prednisone since 2012, no regrets. 

Choline was addressed.

We have found tge few foods that cause the least trouble.

Biopsies of tissues collected throughout the entire length of the small bowel and colon revealed no villi anywhere (celiac disease is usually only responsible for destroying villi in the first third) plus microscopic colitis (which was not present in November when the first colonoscopy was done.)

It seems that Refractory Celiac Disease can go one of two ways: 1) the kind that will respond to steroids and a GFD, and 2) the kind that develops into Lymphoma.  Further studies of her tissue samples have resulted in a diagnosis of EATL-- Enteropathy Associated T-cell Lymphoma.   We see a new Stanford Oncologist that specializes in treating Lymphomas on August 1.

Meanwhile she is tapering down on the predisone, from 40 MG per day to 30, so far. And as the prednisone tapers further it is being replaced by Budesonide, a milder, more targeted steroid that has far fewer side effects.

I was pleased to notice Budesonide in the drug store as an over the counter nasal spray for allergies!  The kind she takes is oral, in a timed-release capsule.  She takes one capsule whole, one opened up and mixed with applesauce, and one opened and crushed, then mixed with applesauce. This method is planned to deliver the crushed granules to the first part of the small bowel, the un-crushed but opened granules to the last part, and the whole capsule to the colon.

After 3 days of it, we think it is a bit better than the prednisone. This is all intended to get her string enough for chemotherapy and a possible bone marrow transplant. And that us what we expect to discuss with the oncologist in August.

 

[Wheatwacked]

Choline deficiency increases lymphocyte apoptosis and DNA damage in humans   Choline deficiency increases lymphocyte apoptosis and DNA damage in humans   A choline-deficient diet increased DNA damage in humans. Subjects in whom these diets induced liver or muscle dys-function also had higher rates of apoptosis in their peripheral lymphocytes than did subjects who did not develop organ dysfunction. Assessment of DNA damage and apoptosis in lymphocytes appears to be a clinically useful measure in humans (such as those receiving parenteral nutrition) in whom choline deficiency is suspected.

Quote

 

Lymphoma: Mayo Clinic

Doctors aren't sure what causes lymphoma. But it begins when a disease-fighting white blood cell called a lymphocyte develops a genetic mutation. The mutation tells the cell to multiply rapidly, causing many diseased lymphocytes that continue multiplying.

The mutation also allows the cells to go on living when other normal cells would die. This causes too many diseased and ineffective lymphocytes in your lymph nodes and causes the lymph nodes, spleen and liver to swell.

 

 

[Scott Adams]

I started taking choline about 6 months ago, and can say that I've notice a vast improvement with my memory. I've always had memory issues, even when I was younger, so I just assumed that it could not improve. But I have noticed a slow, steady improvement, and I believe that my memory now may be even better than when I was in my 20's-30's.

But this might not be saying a lot! 😉 It's still not great...

[trents]

27 minutes ago, Scott Adams said:

I started taking choline about 6 months ago, and can say that I've notice a vast improvement with my memory. I've always had memory issues, even when I was younger, so I just assumed that it could not improve. But I have noticed a slow, steady improvement, and I believe that my memory now may be even better than when I was in my 20's-30's.

But this might not be saying a lot! 😉 It's still not great...

LOL!