This doesn't sound like Crohn's, right...?

[amateurrowing]

Hi all. I started college this September and began experiencing some horrible GI symptoms (diarrhea, urgency, accidents, unbelievable bloating and gas). I kind of expected it as whenever I would eat food outside or at a friends house I would experience similar symptoms. I lost about 8lbs in a couple of months (I am very petite, so this is significant). My mother freaked out and took my to a GI, who took blood and some stool. The only pertinent findings were that I tested positive for the ASCA IgG marker (not IgA however), and my ESR was slightly elevated. (He did not test for calprotectin, which I found odd.) I did this testing on break from college, so I had no symptoms at this time. Given the results of the tests, my GI wants to do a colonoscopy to confirm or rule-out his suspicion of Crohn's. I think that's rather invasive for someone so young. Further -- I don't even think I have Crohn's. Given that I am completely symptom free during breaks from college where I am solely eating home cooked food -- I think I am eating something that is triggering all the horrible symptoms. This question is: what am I eating. I've tried the elimination diet, the low-FODMAP diet, and nothing has worked. I am able to handle FODMAPs just fine. I am really struggling here, and the symptoms are so embarrassing in college. Any advice would be helpful. I would especially appreciate if anyone could tell me if my experience/symptoms are in line with Crohn's.

 

[my little penguin]

My kiddo is your age
He just finished his first semester at college
He also has had crohns
He was diagnosed at age 7
He had far fewer symptoms than you do .
A colonoscopy isn’t that bad.
The prep the day before is crummy
The colonoscopy they give you an iv then you sleep .
When you wake up the procedure is done and your a little gassy that’s it
Maybe some belly cramping .
If it was just food causing the symptoms your ESR (which is a sign of inflammation in the body ) would not be elevated .
Stress / trigger foods can make crohns worse but doesn’t cause the disease .
College is very doable with crohns
A lot of young adults are diagnosed late teens early twenties.

 

[Pangolin]

Sounds like you have a somewhat high chance of Crohn's. Colonoscopy is a good idea.

 

[kiny]

Colonoscopies are a lot less invasive nowadays. The instruments are much smaller, more flexible, and they tend to do more general sedation when they know people have localized inflammation.

20 years ago colonoscopies were pretty horrible, now they are not. People complain about the prep nowadays, not the colonoscopy itself. A lot has improved.

A colonoscopy with a biopsy is really the only way to diagnose crohn's disease. You can't diagnose it with blood or immunological tests, since it's important to rule out several infectious agents through histology. There's several foodborne and mycobacteria that can cause intestinal inflammation. The last thing you want is a doctor giving anti-inflammatories for crohn when you have active TB instead.

An ASCA test is interesting because it might solve some etiological questions about crohn's disease, we don't know why there is an apparent immunological reaction against baker's yeast. But ASCA is less interesting as a diagnostic tool. You certainly can't use it as a diagnostic tool in isolation, many people with crohn's disease have negative ASCA tests and not everyone with a positive test has crohn's disease.

 

[Aituk7]

Hi all. I started college this September and began experiencing some horrible GI symptoms (diarrhea, urgency, accidents, unbelievable bloating and gas). I kind of expected it as whenever I would eat food outside or at a friends house I would experience similar symptoms. I lost about 8lbs in a couple of months (I am very petite, so this is significant). My mother freaked out and took my to a GI, who took blood and some stool. The only pertinent findings were that I tested positive for the ASCA IgG marker (not IgA however), and my ESR was slightly elevated. (He did not test for calprotectin, which I found odd.) I did this testing on break from college, so I had no symptoms at this time. Given the results of the tests, my GI wants to do a colonoscopy to confirm or rule-out his suspicion of Crohn's. I think that's rather invasive for someone so young. Further -- I don't even think I have Crohn's. Given that I am completely symptom free during breaks from college where I am solely eating home cooked food -- I think I am eating something that is triggering all the horrible symptoms. This question is: what am I eating. I've tried the elimination diet, the low-FODMAP diet, and nothing has worked. I am able to handle FODMAPs just fine. I am really struggling here, and the symptoms are so embarrassing in college. Any advice would be helpful. I would especially appreciate if anyone could tell me if my experience/symptoms are in line with Crohn's.

Colonoscopy is fine nowadays, I've done it, nothing to fret about.

As for your symptoms, it could be IBS and you are reacting to processed foods or one thing that's sometimes overlooked is the water.

 

[asadmom]

@kiny Can they identify crohn's-affected cells under the microscope? Sorry, I don't know how to word the questions. When they take the biopsy into the lab, do they seek certain tissues to conclude that it's Crohn's or so they can exclude certain things to say it might be Crohn's?

 

[kiny]

Yes you can see architectural damage to the intestinal structure and metaplasia. In crohn's disease you can see tight pockets of granuloma.

Why the biopsy is really necesarry though is to differentiate crohn from intestinal TB. While both will look very similar, you're looking for acid-fast bacteria to exclude intestinal TB before giving a crohn's diagnosis. If it's TB these bacteria will nicely show up if you stain the sample since the bacteria resist staining.

Often more than one sample is used, if the patient has symptoms that overlap with intestinal TB and crohn, they live in a region with lots of TB, they went on a trip to a place with high TB prevalence, etc, you want multiple sample to make sure there's no TB in any of the sample.

Giving a crohn's diagnosis when it's intestinal TB is very catastrophic. People who go on anti-TNF should also always get a mantoux skin test, to avoid latent TB activation.

 

[asadmom]

I have run into quite a few patients who have normal calpro when their inflammation is active. Symptoms, high inflammation markers via blood but just not thru the stool.

Two patients whom I know so far were hospitalized due to active inflammation and strictures but had normal, repeated calpro. It's mind boggling.

Can anyone chime in please

 

[betta]

I have run into quite a few patients who have normal calpro when their inflammation is active. Symptoms, high inflammation markers via blood but just not thru the stool.

Two patients whom I know so far were hospitalized due to active inflammation and strictures but had normal, repeated calpro. It's mind boggling.

Can anyone chime in please

Thats interesting. Do you have more information?

 

[asadmom]

Hi, it's quite interesting and odd to me. But yeah I know people who have active inflammation and strictures have normal calpro. Therefore the calpro test it not useful for them. They still do it routinely but it's not telling.

 

[Aituk7]

Hi, it's quite interesting and odd to me. But yeah I know people who have active inflammation and strictures have normal calpro. Therefore the calpro test it not useful for them. They still do it routinely but it's not telling.

But they have blood inflammation markers right?

Or they do they have no inflammatory markers at all?

 

[betta]

But they have blood inflammation markers right?

Or they do they have no inflammatory markers at all?

Is elevated platelets a marker ?

 

[asadmom]

But they have blood inflammation markers right?

Or they do they have no inflammatory markers at all?

Yes, the usual suspects like crp and sed rate are elevated. Calpro is the only one that is not meaningful for them.

 

[Pam.estella]

I've wondered about this why some patients have different elevated inflammation markers - could this be why different drugs work in specific cases depending on the pathway driving inflammation? My child has zero inflammation markers in blood work only Calpro so would entyvio be a better choice of drug for these patients?

 

[Pam.estella]

Hi all. I started college this September and began experiencing some horrible GI symptoms (diarrhea, urgency, accidents, unbelievable bloating and gas). I kind of expected it as whenever I would eat food outside or at a friends house I would experience similar symptoms. I lost about 8lbs in a couple of months (I am very petite, so this is significant). My mother freaked out and took my to a GI, who took blood and some stool. The only pertinent findings were that I tested positive for the ASCA IgG marker (not IgA however), and my ESR was slightly elevated. (He did not test for calprotectin, which I found odd.) I did this testing on break from college, so I had no symptoms at this time. Given the results of the tests, my GI wants to do a colonoscopy to confirm or rule-out his suspicion of Crohn's. I think that's rather invasive for someone so young. Further -- I don't even think I have Crohn's. Given that I am completely symptom free during breaks from college where I am solely eating home cooked food -- I think I am eating something that is triggering all the horrible symptoms. This question is: what am I eating. I've tried the elimination diet, the low-FODMAP diet, and nothing has worked. I am able to handle FODMAPs just fine. I am really struggling here, and the symptoms are so embarrassing in college. Any advice would be helpful. I would especially appreciate if anyone could tell me if my experience/symptoms are in line with Crohn's.

Have you tried eliminating dairy?
It does seem odd to be situational.

 

[asadmom]

I've wondered about this why some patients have different elevated inflammation markers - could this be why different drugs work in specific cases depending on the pathway driving inflammation? My child has zero inflammation markers in blood work only Calpro so would entyvio be a better choice of drug for these patients?

That is so interesting! I haven't met anyone who is the other way around. I do think that we must have different subtypes. My son's flags will be all over the place if his inflammation is active whereas my other friends would only look for certain markers that are meaningful for them.

@kiny @Pangolin insight as to why certain patients always have normal calpro even in active inflammation?

 

[kiny]

Calprotectin becomes less accurate the more proximal inflammation is. Maybe that's a factor, I have no idea. For me, in the past my calprotectin has always been pretty accurate in representing ileal inflammation which would later show up on MRI. I have been in remission for a long time now, so I can't say if that is still the case.

 

[Scipio]

I've wondered about this why some patients have different elevated inflammation markers - could this be why different drugs work in specific cases depending on the pathway driving inflammation? My child has zero inflammation markers in blood work only Calpro so would entyvio be a better choice of drug for these patients?

I don't know whether the rise or not of any given inflammation marker is based on a specific inflammatory pathway. I think it might have more to do with the location of the inflammation and the inflammatory signals that are being produced by that inflamed site. And I think it can vary from person to person.

Fecal calprotectin is produced by polymorphonuclear neutrophils ("PMNs" for short or just "neutrophils') - a type of white blood cell that can activate and become more numerous at the site of inflammation. CRP, another inflammatory marker that is measured in the blood, is produced by the liver in response to inflammation anywhere in the body.

In many Crohn's patients, CRP is a useful marker to assess the level of inflammation in the gut. In my own case, my CRP has never been elevated in response to Crohn's inflammation in the terminal ileum. It's always right down in the low normal range no matter how hot my intestinal Crohn's is raging. However, years ago when I had an extra-intestinal manifestation of Crohn's in the pericardium, my CRP shot through the roof (>200). But once my Crohn's at both locations was brought under control with Stelara, the CRP dropped back down to normal.