PLE, CIL and the Diagnostic Process

The terms we use to describe this disease can be very confusing.  I want to try to use this post to clarify the terms PLE and CIL, and help you understand why your vet might have used both of these terms in making a diagnosis.

When your vet is doing the initial workups to try to figure out what’s going on with your dog, she usually will do some bloodwork.  When the bloodwork is run they’ll notice that the protein levels are low.  At this point, and depending on how low it is by this point, they’ll probably start suspecting a protein-losing disease of some sort.

Protein can be lost through the kidneys or the intestine and the blood test doesn’t tell them which, so now they need to narrow that down.  They’ll run more tests and/or make preliminary diagnoses based on other symptoms.  Once they determine that the protein is being lost through the intestines, they’ll make a diagnosis of PLE, which literally stands for “protein-losing enteropathy.”  What that diagnosis and phrase means is “protein loss from the intestine.”  Now we know where the protein is being lost from; we know what part of the body is diseased.  But it’s not the whole story.

At this point, they still have to figure out which *form* of PLE it is in order to know how to treat it, because there are several different ways the intestines can lose protein, and the different ways have different treatments. That’s when they start looking at the intestines via ultrasound to see what kind of masses or abnormalities are in there and, after this, they’ll perhaps suggest you do an endoscopy with biopsy to determine if the lymphatic cells are diseased or if other problems are present.  At this point they are looking to see if your dog has lymphoma, CIL, IBD or some other protein-losing disease.

Once this round of testing is complete they will refine the diagnosis to CIL and/or or some other intestinal disease.  And here is, I think, where it gets confusing.  You get the diagnosis of PLE first, and then when they narrow it down you get a more refined diagnosis of CIL (and maybe also IBD) that basically tells you what kind of PLE it is.  It’s this second diagnosis that tells your vet what your treatment options are.

Ultimately we end up with two diagnoses that describe the same disease.  You can more easily understand this if you think about having a diagnosis of cancer.  Your doctor might say, “you have cancer” but she might need to do more testing to determine where, in the body, the cancer resides, or exactly what form it takes.  So you have an initial diagnosis of “cancer,” but a later, more refined diagnosis of “non-Hodgkins lymphoma.”  The relationship between the terms PLE and CIL is very much the same.

I hope this clears up some of the confusion around these terms.



Symptoms: Disease or Meds?

Thought I’d take a few minutes to talk about a confusing issue surrounding symptoms.  Many of our CIL dogs are prescribed prednisone, a powerful steroid, which is notorious for a host of side effects.  Among the side effects that it can cause are abdominal distention (bloating) and hind-end weakness.

It’s a matter of some frustration that the disease of CIL itself can frequently cause similar symptoms.  When protein levels are low, fluid can accumulate in the abdomen or in other areas of the body, causing a bloated appearance.  Sustained low protein levels also lead to muscle wasting, since the body will compensate by leaching protein from muscle tissue.  This causes weakness, which can also look like a prednisone side effect.

So, what do we blame when we see these symptoms?  The answer is always in the protein levels.  These are very common disease symptoms, so a flare up is the more likely issue unless you know from recent testing that your dog’s protein is normal.

If your dog is showing either of these symptoms (bloating or muscle weakness), you need to have the protein levels checked as soon as possible.  Do not assume it’s a side effect of the medications, because cutting back on the meds at this point might be the exact opposite of what’s needed (and cutting back on prednisone without veterinary supervision can be life threatening).

Let your vet do the testing and advise you on what to do, and understand that if the protein is low it might involve increasing those steroids for a while.

Nobody likes the side effects of prednisone, but sometimes the choice is between that and a sick or dying dog.  Some dogs remain on it for life.  Under veterinary supervision, your dog’s dose of prednisone can eventually be tapered down to the lowest effective dose, reducing the side effects but maintaining enough therapeutic effect to keep the disease in remission for as long as possible.

What’s with all the rules? Are you anti-raw?

It’s come to my attention that our rules in the Facebook group about feeding advice aren’t well understood.  I’m going to try to fix that with a brief article that explains my thoughts in a little more detail.

Let me first start off by saying two things that are specific to raw feeding:  1) I understand that raw feeding, by itself, is a controversial, hot-button issue.  2) I am not, in a general sense, against raw feeding, when it comes to healthy dogs.

I’d prefer to not get bogged down in the controversy that surrounds feeding raw.  I believe that it’s been helpful in improving the health of some dogs not affected by primary CIL.  The issue I have with raw is very simple.  It’s just not possible to eliminate enough fat from a raw diet to make it appropriate for dogs that have primary CIL. 

To get to that level of ultra low fat, food has to be cooked, and excess fat has to be drained.  There’s no way around it.  There’s just too much fat in a raw diet.

So, that’s the short answer.  But there’s a lot more to it.  Bear with me here.

CIL is a confusing disease to begin with, because we have primary and secondary disease states, where the CIL itself has different causes.  In secondary CIL, the task is fairly straightforward.  Remove the cause of the primary disease, and the secondary stuff goes away.  When CIL is secondary, the primary disease is usually IBD, and dogs that react to a protein source, such as chicken, are often primary IBD dogs.  With *those* dogs, it’s often as simple as feeding a hypoallergenic diet or changing their protein source from one thing to another. 

A key thing to remember here is that these are dogs who might well tolerate a higher fat diet, once the IBD has been addressed.  So you might see success stories with these dogs that involve things like raw diets or other oddly fat-filled items.

I’m all for being happy about any success!  But we need to remember that, for primary CIL, fat is always the enemy.  And most of us don’t know, and don’t have a way to know if CIL is primary or secondary. 

Vets often prescribe a hypoallergenic diet initially, in the hope that CIL is secondary and the diet change will fix the problem.  If it does, you can be fairly confident that your dog has primary IBD and that CIL will resolve on its own. In these cases, it’s fairly clear that the protein source was the problem.

Unfortunately, the primary CIL dogs need a different approach which will always include a low fat diet, and the path is not always so straight.

Here’s where things get sticky from a group rules perspective.  It can be argued that a rule against recommending fatty foods is too strict, since some of these dogs (CIL secondary dogs) will ultimately be able to eat more fat.  It can also be argued that we should give people the information to assess what approach they want to take, and let them decide. 

In truth, that’s exactly what we do.  I encourage everyone when they join the group to read the articles here on the website, which talk extensively about these issues.  I hope that they’ll work with their veterinarians to determine if, say, a hypoallergenic diet should be prescribed.  That’s the one higher-fat diet I’m not going to worry about, because it’s always fed with a vet’s supervision.

So, we do try to provide information that allows everyone to make informed decisions about what they are willing to risk.  But when it comes to random posts in an open community on the internet, there’s all kinds of ways things can go sideways fast.

I’ve been doing this since 2009, on three blogs, on two forums I’ve created, and now on Facebook.  One thing I’ve learned is that people don’t always have the time to educate themselves adequately, and that even when they do, there’s a lot to process and they don’t always take it all in easily or quickly.  Then you have the people who pop in to promote a product and the people who are obsessed with the latest feeding trends and believe those things will cure every ill known to mankind.  And, in the meantime, there are sick dogs here that desperately need to be helped.

I am all about harm reduction.  People have questions, and they need solid answers that will not create more problems for their dogs.  With that always in mind, I can’t endorse recommending any high-fat diets or food items, because the potential for harm is too great.  One person comes online and talks about how well their dog did on a diet that is relatively high in fat, and the next thing you know, there are three or four sick dogs in the group because they’re primary CIL dogs and their owners tried that high fat diet. And those dogs might not recover from that relapse, and they might die.  This is a serious disease.  

This is where it gets personal for me.  I don’t want sick dogs in the group that I could have protected.  The bottom line here is this: No dog, whether primary or secondary, is ever going to have a relapse because they avoided fat.  Some dogs *are* going to relapse if they are fed too much fat. 

But that’s not happening on my watch.  Not if I can help it.  

Everyone here probably ought to learn as much as they can about primary and secondary CIL, protein and fat, and then make a decision about what to feed.  But we all need to recognize that not everyone who comes to the group will have had time to get up to speed on this issue, and since dogs’ lives are in the balance there’s a grave responsibility implied in that. 

Because I don’t want a single relapsed dog laid at *my* feet that I could have protected, we’re not going to endorse any diet here that doesn’t meet the ultra low-fat standard.  I hope to protect all CIL dogs to the best of my ability, and that’s the sole reason this rule exists.