Do anti-diarrheal medications help during recovery?

[Geriatric Newby Caregiver]

Well, the diagnosis is complete (At least for now). 

While my wife has no villi anywhere in her small intestine, she dies not exhibit sufficient genetic markers and antibodies to conclude that she has Celiac disease. 

She has Enteropathy Associated T-cell Lymphoma, which sometimes follows Refractory Celiac Disease. But in her case, they have determined that the Lymphoma came first.

She started chemotherapy on Monday- a dislled back dose of Brintuximab only. She was already on prednisone (which is also part if the treatment for t-cell lymphoma) to reduce the diarrhea. As the prednisone dosages began to decrease, she also started a targeted steroid, Budesonide, which in capsule form is often used in cases of Chron's Disease. In her case, she takes one capsule whole (for the colon) one capsule opened and mixed into applesauce (for the distal end of the small bowel) and a third capsule,  opened and crushed for the near end. While the prednisone alone changed the diarrhea,  the Budesonide stopped it, (symotomatically.)

The chemotherapy will help put the Lymphoma into remission, but not cure it. The cure would be Autologous Bone Marrow Transplant. Right now she is not a candidate for that.  But if the GI tract can heal while the lymphoma is in remission, it isbpossible that she could be eligible in the future.  They used to not recommend it fir persons over 70, but now they do, only if they are otherwise hale and healthy. 

The only issue we had with chemo was tgat, unbeknownst tobus, she was coming down with a UTI AR the time tge chemo was administered. That threw her into an ultra-high temperature late that night. Followed by a second spike the following afternoon. So we took her up to the ED that afternoon. Four days later, she is still recovering, but we are hopeful.

Not a Celiac, but possibly even a bit more gluten intolerant than many.

Next chemotherapy,  Sept 6.

At least we have a diagnosis and a treatment plan!

[trents]

Thanks for the update. A very unusual set of circumstances and there would seem to be a real challenge ahead for the two of you. I am sure you have thought to yourselves that you wish the T-cell lymphoma had been caught earlier. I mean, how long has this been going on? Please keep us posted. There will be those on the forum who will lift your wife up in prayer.

[Wheatwacked]

1 hour ago, Geriatric Newby Caregiver said:

While my wife has no villi anywhere in her small intestine, she dies not exhibit sufficient genetic markers and antibodies to conclude that she has Celiac disease. 

Does not mean she doesn't have Non Celiac Gluten Sensitivity. Also many people have Celiac Disease despite low antibody counts and none of the genetic markers typically tested for. New genes are being found with links to Celiac Disease.

This appears to be a similar case.

"Enteropathy-associated T-cell lymphoma (EATL) is a very rare peripheral T-cell lymphoma which is mostly associated with celiac disease."   Celiac Disease, Enteropathy-Associated T-Cell Lymphoma, and Primary Sclerosing Cholangitis in One Patient: A Very Rare Association and Review of the Literature

Now it is even more important to get her vitamin intake. Especially vitamin D for the autoimmune effects  "Although the research is still not conclusive, it suggests that there may be some connection. For people with lymphoma, low levels of vitamin D can lead to poorer outcomes, both in terms of disease progression and overall survival."   Vitamin D and Lymphoma: Benefits and Uses

"Primary sclerosing cholangitis (PSC) is a chronic cholestatic liver disease of unknown etiology, characterized by inflammation and fibrosis of the biliary tree "  Also considering her high liver enzymes, sorry to be repetative about this, Choline is essential. And we Know her choline intake has been deficient for extended period.  

Quote

Chemotherapy seems to be more beneficial rather than surgery; however, rapid progression of disease during primary treatment, nutritional deficiency, performance status impairment, and treatment-related complications may prevent the use of adequate chemotherapy and radiotherapy in most patients with EATL.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4768892/

I am particularly interested in this because except for the name of the cancer her progression sounds suspiciously similar to my wifes (hers was ovarian cancer) and I've spent the last 18 years trying to fathom what happened. In the end she passed and it all comes back to though they did their best to fight the cancer, no one ever considered malnutrition as a cause and there was never any suggestion that nutrition could be an influence in her continueing decline. At the end she was subsisting on scrambled eggs, canadian bacon and ENGLISH MUFFINS and the doctors had no problem with this. They just don't know and I believed they knew everything. I was so wrong.

I truely hope she does well and thank you for keeping us updated.

[Cadge]

10 hours ago, Geriatric Newby Caregiver said:

Well, the diagnosis is complete (At least for now). 

While my wife has no villi anywhere in her small intestine, she dies not exhibit sufficient genetic markers and antibodies to conclude that she has Celiac disease. 

She has Enteropathy Associated T-cell Lymphoma, which sometimes follows Refractory Celiac Disease. But in her case, they have determined that the Lymphoma came first.

She started chemotherapy on Monday- a dislled back dose of Brintuximab only. She was already on prednisone (which is also part if the treatment for t-cell lymphoma) to reduce the diarrhea. As the prednisone dosages began to decrease, she also started a targeted steroid, Budesonide, which in capsule form is often used in cases of Chron's Disease. In her case, she takes one capsule whole (for the colon) one capsule opened and mixed into applesauce (for the distal end of the small bowel) and a third capsule,  opened and crushed for the near end. While the prednisone alone changed the diarrhea,  the Budesonide stopped it, (symotomatically.)

The chemotherapy will help put the Lymphoma into remission, but not cure it. The cure would be Autologous Bone Marrow Transplant. Right now she is not a candidate for that.  But if the GI tract can heal while the lymphoma is in remission, it isbpossible that she could be eligible in the future.  They used to not recommend it fir persons over 70, but now they do, only if they are otherwise hale and healthy. 

The only issue we had with chemo was tgat, unbeknownst tobus, she was coming down with a UTI AR the time tge chemo was administered. That threw her into an ultra-high temperature late that night. Followed by a second spike the following afternoon. So we took her up to the ED that afternoon. Four days later, she is still recovering, but we are hopeful.

Not a Celiac, but possibly even a bit more gluten intolerant than many.

Next chemotherapy,  Sept 6.

At least we have a diagnosis and a treatment plan!

My heart goes out to you both, and you help me put my own situation into better perspective.  At 75 I was diagnosed as coeliac in 2020 having had ibs-d since my 20’s.  I live in the uk and my diagnosis was from a blood test only.  I’ve been gluten free since 2020 but still have loose bowels daily, average 3 to 4. Now eliminating dairy and on the low fodmap diet.  Seeing my own nutritionist as the local GP hasn’t been much help.  I’ve used loperamide for years now and when I try eliminating it completely I get worse symptoms, so am back to 1 a day which seems to help, along with acacia senegal, a probiotic and L-glutamine to heal the gut (prescribed by my nutritionist). I often get down and discouraged when I get a flair and cannot work out why, now I will think of your wife and be grateful for my own situation instead of bemoaning my fate. I will be saying a prayer for you both, God Bless.

[cristiana]

3 hours ago, Cadge said:

Seeing my own nutritionist

I think a really good properly accredited nutritionist is worth their weight in gold.    I have had  three nutritionists,  but only two of them were helpful: one was NHS, the other private.  However, the first nutritionist I saw after my diagnosis  seemed to me to only have a basic grasp of the gluten free diet and I was in and out of his office in less than a quarter of an hour.   It wasn't long enough.  

 

 

 

[Cadge]

19 minutes ago, cristiana said:

However, the first nutritionist I saw after my diagnosis  seemed to me to only have a basic grasp of the gluten free diet and I was in and out of his office in less than a quarter of an hour.   It wasn't long enough.  

 

 

 

I had a similar experience, first of 3 in total was NHS and immediately told me the finger pricks I had done for intolerances were not backed scientifically and basically were rubbish.  I was trying dairy free and was told to go back to dairy asI wasn’t getting enough calcium, I did and got worse.  A nutritionist trained in coeliac, IBS, intolerances etc are worth their weight in gold!

[trents]

1 hour ago, Cadge said:

I had a similar experience, first of 3 in total was NHS and immediately told me the finger pricks I had done for intolerances were not backed scientifically and basically were rubbish.  I was trying dairy free and was told to go back to dairy asI wasn’t getting enough calcium, I did and got worse.  A nutritionist trained in coeliac, IBS, intolerances etc are worth their weight in gold!

Even better is a nutritionist who is themself a celiac or has a family member who is.

[cristiana]

3 minutes ago, trents said:

Even better is a nutritionist who is themself a celiac or has a family member who is.

I agree.  Wouldn't it be wonderful there was a directory of nutritionists in this category, or restaurants, bakeries etc who claim to be gluten free that are actually run by people who are coeliacs or have family members who are!

[Wheatwacked]

33 minutes ago, Cadge said:

was told to go back to dairy

This ain't the milk we grew up on. I am up to 4 12 ounce glasses of milk a day. To keep costs and omega 6 fatty acids down I buy one gallon commercial milk @ $5 and a half gallon of 100% pasture fed milk @ $7. By combining them I end up with omega 6:3 ratio of less than 3:1. Commercial milk is 5:1, grassfed 1:1 and organic 

The terms omega-3 or omega-6 refer to the carbon, either the 3rd or 6th carbon starting at the end of chain not attached to the glycerol backbone, at which the first double bond appears.... The two most abundant phospholipids are phosphotidyl choline and sphingomyelin.   http://milkfacts.info/Milk Composition/Fat.htm#:~:text=Milk fat contains approximately 65,blood cholesterol and heart disease.

(There's that pesky choline again.) So, don't drink milk, don't eat eggs or red meat.  Not surprising that "Gallbladder removal is one of the most common surgical procedures"   GALLBLADDER REMOVAL SURGERY

We have a symbiotic relationship with Lactobacillus in our gut. Unfortunately our western diet does not support that relationship, the lactobacillus dies off and we become lactose intolerant. Switching to lactose free milk now allows us to feel the inflammatory effects of excessively high omega 6:3 in dairy supplemented with Palmitic Acid to increase production. Homemade dill pickles made by salt fermentation and not sterilized can help repopulate.

Naturally Fermented Pickles [The Complete Guide]

Quote

We were surprised by both the magnitude and the consistency of our results.  The ratio of omega-6/omega-3 fatty acids in organic milk was 2.3 averaged over a year, compared to 5.8 in conventional milk.  In addition, other health-promoting fatty acids and nutrients (e.g., antioxidants) are also present in organic milk at higher concentrations.   New Insights Gained into the Role of Dairy Products in Promoting Healthier Diets

 

[knitty kitty]

I've found better results taking Tryptophan than glutamine.  

Glutamine is a prolamine found in gluten and acts as an excitory neurotransmitter.

Tryptophan helps promote tight junctions and is necessary for the production of serotonin, the feel good neurotransmitter.  Tryptophan helps lower inflammatory cytokines.

Increasing dairy consumption as @Wheatwacked said, if one is not intolerant to lactose and casein, is a great way to increase intake. 

Here's some interesting reading...

Tryptophan: A Unique Role in the Critically Ill

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8583765/

And...

Tryptophan metabolism and indoleamine 2,3-dioxygenase expression in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1941917/

[Scott Adams]

It seems like you could take both without issues.