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Crazy turn of events for us!

I am reeling everyone and very cautiously optimistic, but we sought out a 3rd opinion yesterday despite the fact that my daughter is doing very well. It never sat right with me that her first 2 GI's differed so much and for my peace of mind I needed to have a 3rd weigh in.

Here is a recap: Last May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years.

First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the GF diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with GF diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE.

Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later.

At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and GF diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too.

Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy...

He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you all have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only.

I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.
 

my little penguin

Moderator
Staff member
Chief of Peds ??
Actual GI or what specialist?

Sorry but based on your story and two opinions stating ibd
It’s hjghly unlikely she doesn’t have some form of ibd
Ulcerative colitis does very well on 5-asa

I would definitely want multiple fecal Cals /bloodwork
Every 2-3 months in a row prior to declaring her only to have celiac
Since as you said no other outward signs
And you don’t want damage going on silently

So you have 2 out of 3 docs saying she has ibd

Ibd can wax and wane on its own so please be carefully
Many many GI will not say it’s a form of ibd unless they see evidence
In her case biopsy was objective evidence
Have the slides re read somewhere - top three ibd places
You don’t need to travel

Pathological there are features only present in ibd not celiac

I get your happiness I do
At one point they changed Ds dx to probably Crohns
Since they didn’t think he truly had Crohns

3 years later scope revealed Crohns pathology /healing/damage similar to first scopes at dx at age 7

So very pessimistic on my part

Docs can only state what they believe to be true at the time woth the values they have in front of them

And that can change
 
Chief of Peds ??
Actual GI or what specialist?

Sorry but based on your story and two opinions stating ibd
It’s hjghly unlikely she doesn’t have some form of ibd
Ulcerative colitis does very well on 5-asa

I would definitely want multiple fecal Cals /bloodwork
Every 2-3 months in a row prior to declaring her only to have celiac
Since as you said no other outward signs
And you don’t want damage going on silently

So you have 2 out of 3 docs saying she has ibd

Ibd can wax and wane on its own so please be carefully
Many many GI will not say it’s a form of ibd unless they see evidence
In her case biopsy was objective evidence
Have the slides re read somewhere - top three ibd places
You don’t need to travel

Pathological there are features only present in ibd not celiac

I get your happiness I do
At one point they changed Ds dx to probably Crohns
Since they didn’t think he truly had Crohns

3 years later scope revealed Crohns pathology /healing/damage similar to first scopes at dx at age 7

So very pessimistic on my part

Docs can only state what they believe to be true at the time woth the values they have in front of them

And that can change
Yes, Chief of Pediatric Gastro at the other major hospital. I am not jumping the gun, believe me. I have learned that they don't know everything though. She does have Celiac, the first was wrong. He isn't saying she doesn't have IBD, just that he suspects she doesn't. We are doing monthly fecals. I know it can wax and wane, I truly get it, that is why I say I am very cautiously optimistic.
 

crohnsinct

Well-known member
Sounds plausible. Celiac can raise cal pro and her numbers are not super high. However, I think you are very smart to proceed cautiously and get multiple cal pro results to monitor going foward.

Like MLP I am also curious to know what the biopsy reports said with regard to IBD.

So will you be transferring her care to this third GI?

Good luck and keep us posted.
 
I was going to answer all the questions but I think it is best if I just come back and update down the road. I am extremely grateful for everyone, I’ve learned so much from all of you. Please know I would never willfully under treat my daughter and I am only agreeing to this because I think there is solid evidence to back it up as being plausible. I am confident in the plans to safely monitor with monthly fecals and blood work. I would never want to over treat either giving her meds she doesn’t need if there is a chance he is right that it was microscopic colitis caused by Celiac that we have treated and can now be maintained with diet alone. It will be a long time before I will rule out IBD completely. Again, thank you all for all your thoughts and ideas. I am truly grateful, it has allowed me to ask better questions at her appointments and challenge when needed.
 
Well, I think that is amazing news! I hope you can move to GF diet alone - what a gift for her quality of life!
Prayers that the improvement continues and diagnosis is concrete!
 

Maya142

Moderator
Staff member
Honestly, the only way to know for sure would be to take her off IBD meds and see if she flares.

But that seems risky to me. It is totally possible she has mild ulcerative colitis that responded to Lialda. 5 ASAs do work well in UC. And even if it was indeterminate colitis or Crohn's - some percentage would respond to 5 ASA's - those with mild disease.

I would honestly be cautious about this. Somewhat optimistic too though - it does sound plausible.

Bu they don't diagnose UC or indeterminate colitis that easily, so I was also wondering what biopsies showed.
 
Hi all. I can't believe it is now September and I am essentially in the same unknown territory. She has not had any flares since stopping Lialda (knock on wood). Her last flare was September 2017 right before she was diagnosed, but as I said before it is on my mind every day regardless and we are testing FCP every 4 weeks.

The only changes I have noticed over the last 3 months have been steady weight but not gaining, but she also stopped 720 calories of Boost shakes at the same time so I figured it might slow a bit due to that and that she had grown just shy of 4" and gained 9lbs in a short span of time. Her BMI is still at 9% which is up from the 1-2% it started with. Coloring and energy level are good which were our other indicators.

The other change is that she leans more towards a constipated stool now. Not pebbles but like a 2/3 versus the 4. I know she is not great about keeping hydrated, maybe the shakes had helped in that department before. I mentioned it to her GI and he wasn't concerned it was a sign of active colitis and that if I wanted to put her back on Lialda then he would recommend a scope to see how things really looked. I was kind of surprised by this at first given how benign the 5-asa is. I really don't want to stir things up with a scope but I definitely would love a more definitive answer than the constant worry she's one of the exceptions with normal labs and no symptoms, yet flaring on the inside.

On the positive side, her GI knows I am extremely nervous and he always responds to me extremely quick and I always get his nurse on the phone when I call versus leaving a message. It is incredible, I had no idea communication could be this good, haha! Anyway, just wanted to update as you all have been such a tremendous resource over the last year.
 

crohnsinct

Well-known member
Great to hear she is feeling well.

Colitis doesn't usually lead to constipation. Colonic inflammation usually produces loose stools.

Constipation could definitely be diet (fluid, lower calorie intake, low fiber etc)related or IF she had Crohn's perhaps it is now appearing in the small bowel as kids with small bowel disease do often get constipation? Lialda wouldn't help there.

Also, many Celiac patients have constipation as a presenting symptom so you might want to make sure no gluten has snuck it's way back into her diet. Mehita is our Celiac expert so maybe she can weigh in on the unusual places you can find gluten. If she is getting "glutened" then that would slow weight gain and growth etc.

How have her cal pro numbers been?
 
Great to hear she is feeling well.

Colitis doesn't usually lead to constipation. Colonic inflammation usually produces loose stools.

Constipation could definitely be diet (fluid, lower calorie intake, low fiber etc)related or IF she had Crohn's perhaps it is now appearing in the small bowel as kids with small bowel disease do often get constipation? Lialda wouldn't help there.

Also, many Celiac patients have constipation as a presenting symptom so you might want to make sure no gluten has snuck it's way back into her diet. Mehita is our Celiac expert so maybe she can weigh in on the unusual places you can find gluten. If she is getting "glutened" then that would slow weight gain and growth etc.

How have her cal pro numbers been?
Yes, Celiac can cause constipation and all the same symptoms as IBD. It’s a blessing and a curse she doesn’t have an obvious and immediate reaction to being glutened, so hard to know. We are very careful but it is hard to be 100% sure with school and life and all the opportunities for cross-contamination outside the home. I do worry about Crohn’s even though her past was all colon and diarrhea. Her FCP has been good, it went up a little but still normal and he told me it was due to consipated stool. We are due for one this week so we’ll see, just trying to get my ducks in a row before her appointment next month. Part of me doesn’t want to rock the boat and part of me wants to scope to ease my mind nothing is being missed. I don’t think he will want to scope, he just mentioned that when I pushed back on worrying about change of bowel habits leaning towards constipation.
 

my little penguin

Moderator
Staff member
That’s a myth that Crohns with inflammation doesn’t cause constipation
More than a few kiddos here have bad constipation when Crohns is flaring

That said glad your GI is on top of it
Realize no GI will scope just because your worried
They will only scope if it’s medically indicated

Why did she stop the boost shakes ?
Even if she only has Celiac
Her weight is low and growing window is short
Getting enough calories when dietary restrictions can be tough

Celiac is tough
But rules are similar for life threatening food allergies
When eating out in public
“When in doubt do without “ and if you can be 100% sure you don’t eat it

Since the stakes are higher for my kiddo
Cross contamination in food can kill
He only eats food from home at school
Brings his own food to parties
But has a growing list of “safe” chain restaurants
Woth safe menu items
So that can be nice and long for college ;)

Does she have a chef card
So that it’s easier to start that conversation when eating out ?

https://www.foodallergy.org/sites/default/files/migrated-files/file/chef-card-template.pdf


I am sure there are similar for celiac ;)
 
That’s a myth that Crohns with inflammation doesn’t cause constipation
More than a few kiddos here have bad constipation when Crohns is flaring

That said glad your GI is on top of it
Realize no GI will scope just because your worried
They will only scope if it’s medically indicated

Why did she stop the boost shakes ?
Even if she only has Celiac
Her weight is low and growing window is short
Getting enough calories when dietary restrictions can be tough

Celiac is tough
But rules are similar for life threatening food allergies
When eating out in public
“When in doubt do without “ and if you can be 100% sure you don’t eat it

Since the stakes are higher for my kiddo
Cross contamination in food can kill
He only eats food from home at school
Brings his own food to parties
But has a growing list of “safe” chain restaurants
Woth safe menu items
So that can be nice and long for college ;)

Does she have a chef card
So that it’s easier to start that conversation when eating out ?

https://www.foodallergy.org/sites/default/files/migrated-files/file/chef-card-template.pdf


I am sure there are similar for celiac ;)

Thanks MLP! Yes, I know constipation can be present with Crohn's inflammation which is why I was concerned with her leaning more that way. I don't think it is truly worrisome just of note for me that it is different since going off meds. I have the is it IC/Celiac versus just Celiac versus Crohn's in time/Celiac every present in my mind thus I analyze and make myself nuts over any small change in her norm.

Her initial GI wanted shakes plus Lialda as PEN. Whether it was the meds or the combo I don't know, but her labs normalized very quickly. It also helped with that fast growth. She really disliked the shakes and he was fine with her eating those calories instead. I know she is thin, but she is back on her growth weight percentile pre-diagnosis. My kids are long and lean, regardless I'd still like to see a better buffer on her just in case. Once she dd that growth last spring she developed a small breast bud so that was nice confirmation too. I still don't need a bra and got my period at 16 so I was kind of surprised she started to show early signs of puberty and thankful!

I trust her 100% away from home on diet, she is a rule follower. Hopefully she won't challenge that in the years ahead. I do worry about things like classroom desks, lunch tables, door knobs, etc. I am eager to re-do her Celiac panel next month to see where she is at. She was >100 at diagnosis (lab doesn't register highter) to 33 at 5 months out. Hoping she's closer to normal soon (0-3). It can vary, some heal fast and others can take a couple years to normalize. I have no proof but my suspicion is that her Celiac was 'activated' in 2nd grade and went 3 years undiagnosed, I suspect that >100 was quite high to start.

As always, thanks for your insight!
 
I turned in her fecal yesterday, I have a bad feeling about this one. It smelled strange, not sure if that’s because she’s been sick or slow transit related or what. If it were to come back abnormal, would you want to retest in a month, ask to go back on Lialda which we know worked, or want to rescope? I feel like I could make a case for each scenario. Would your answer change depending on how high it was?
 

crohnsinct

Well-known member
It would depend on the value for me. Keep in mind that Celiac can raise Calpro also. Not to the high levels that Crohns can but could raise it to the "muddy" area....ya know...just for fun.
 
It would depend on the value for me. Keep in mind that Celiac can raise Calpro also. Not to the high levels that Crohns can but could raise it to the "muddy" area....ya know...just for fun.
I know that’s why I’m in this mess of unknowns. I can’t believe we are still not clear on whether she has IBD or not. I guess I thought we would clearer signs one way or another by now. She went to half dose in May and been off since June. It’s maddening, but I know I should be thankful she’s not flaring. I just don’t like her bowel habit changes.

What would that value be for you? And would that mean scoping or just go back on Lialda? I appreciate some outside opinions.
 

crohnsinct

Well-known member
Where is her disease primarily? I imagine colon as they tried Lialda. Colonic inflammation usually returns much higher than small bowel but you also sort of have to know your own kid. Some kids will return on the lower end (I think JMrogers boy is one) but be pretty inflamed inside. Others might return really high but have minimal inflammation. The best way to start getting a feel for this is pulling cal pro right around scopes.

So, for my daughter with colonic disease, our GI's have repeated cal pro for levels up to about 500. Consistent levels of 500-1000 might get us a change in therapy (dose escalation, shortening REmicade interval or in your case going back on Lialda). With old GI over 1000 would mean scopes but new GI will just adjust therapy. He even just adjusts therapy at 2500. He is of the opinion that the cal pro tells us there is inflammation and looking won't change his therapeuticdexision so not worth the risks.

For my daughter with small bowel disease she has been getting cal pro of 150's to 200 consistently. Maybe the past 4-5 months. Our GI has a lower threshold for small bowel disease so one more cal pro of around 150-200 and he is thinking about adjusting therapy.

If levels are elevated and GI wants to move and you trust him/her and they say go back on Lialda, given it has worked in the past, I would give it a try. I know we say it isn't effective with Crohn's but I have read and heard that it is more effective with colonic Crohn's and if the one GI is saying they are thinking UC then Lialda makes a lot more sense. No one knows your child better than you and if you trust your GI go with what you both decide. I would just make sure to pull another cal pro 4-8 weeks later to monitor and make sure you are going in the right direction.
 
Where is her disease primarily? I imagine colon as they tried Lialda. Colonic inflammation usually returns much higher than small bowel but you also sort of have to know your own kid. Some kids will return on the lower end (I think JMrogers boy is one) but be pretty inflamed inside. Others might return really high but have minimal inflammation. The best way to start getting a feel for this is pulling cal pro right around scopes.

So, for my daughter with colonic disease, our GI's have repeated cal pro for levels up to about 500. Consistent levels of 500-1000 might get us a change in therapy (dose escalation, shortening REmicade interval or in your case going back on Lialda). With old GI over 1000 would mean scopes but new GI will just adjust therapy. He even just adjusts therapy at 2500. He is of the opinion that the cal pro tells us there is inflammation and looking won't change his therapeuticdexision so not worth the risks.

For my daughter with small bowel disease she has been getting cal pro of 150's to 200 consistently. Maybe the past 4-5 months. Our GI has a lower threshold for small bowel disease so one more cal pro of around 150-200 and he is thinking about adjusting therapy.

If levels are elevated and GI wants to move and you trust him/her and they say go back on Lialda, given it has worked in the past, I would give it a try. I know we say it isn't effective with Crohn's but I have read and heard that it is more effective with colonic Crohn's and if the one GI is saying they are thinking UC then Lialda makes a lot more sense. No one knows your child better than you and if you trust your GI go with what you both decide. I would just make sure to pull another cal pro 4-8 weeks later to monitor and make sure you are going in the right direction.
Her disease was in the colon only, nothing on MRE. She presented with diarrhea. She was originally classified as Indeterminate Colitis, it was patchy and not continuous like UC. I said Crohn's as I know that can sometimes evolve to that in time. I thought if she would flare off meds it would be diarrhea again. The fact that she has gone the opposite way has thrown me off. She was going every day on Liada, and now she goes every other sometimes every 3rd day. I was expecting her to have diarrhea flares like the past if we were back to an IBD suspicion. I need to see what this FCP this week is, but I wanted to get an idea of whether the knowledgeable parents here felt going back on Lialda or scoping made more sense. Her FCP was 178 at diagnosis/scope and we know she had inflammation. Having done many since then i wonder how accurate it was. She could barely go and it was like a teaspoon of what looked like straight mucus. She was cleaned out after a flare by the time they ordered it, 2 days earlier and it might have been a different story. That was her only abnormal one, all the ones after have been normal. Adding in, her diet is pretty routine, only change has been going off Lialda and removing Boost shakes.
 

Maya142

Moderator
Staff member
Symptoms can change over time - my daughter tended towards constipation when she was diagnosed (and scopes showed clear inflammation and ulcers at that point), but over the years, has started having diarrhea when she flares.

Colitis does typically lead to diarrhea but every kid is different. Similarly, you need to know what your kid's normal FCP is vs. her high FCP. For example, my daughter's FCP tends to be lower - her highest ever was 480. We know it can go down to 25, so that is her GI's goal - under 50. If she gets to a 100-150, her GI gets concerned.

For many kids, an FCP of 100 is very low, but for her, it is higher than we'd like. You have to know what your child's trend is.

I think because her diagnosis is unclear, scoping would make sense if the FCP is high.
 
Symptoms can change over time - my daughter tended towards constipation when she was diagnosed (and scopes showed clear inflammation and ulcers at that point), but over the years, has started having diarrhea when she flares.

Colitis does typically lead to diarrhea but every kid is different. Similarly, you need to know what your kid's normal FCP is vs. her high FCP. For example, my daughter's FCP tends to be lower - her highest ever was 480. We know it can go down to 25, so that is her GI's goal - under 50. If she gets to a 100-150, her GI gets concerned.

For many kids, an FCP of 100 is very low, but for her, it is higher than we'd like. You have to know what your child's trend is.

I think because her diagnosis is unclear, scoping would make sense if the FCP is high.
Thank you. I'm starting to feel the same way regarding the scope pending results. I don't have enough gauge on the FCP just know she was 178 at diagnosis and all others have been normal. She has ranged within normal, but all normal. Her lowest was 19 on Lialda last March. We are at the 1 year mark next month and she's had 6 so far.
 

Maya142

Moderator
Staff member
Were the normal FCPs all while on Lialda? Are her FCPs trending upward (even within the normal range)?
 
Were the normal FCPs all while on Lialda? Are her FCPs trending upward (even within the normal range)?
No, the normals have been on and off Lialda. The only abnormal was pre-treatment at diagnosis. They are rising however within normal. I do know Celiacs can have higher normals though so not sure what that means really. When I question her GI on the rise, he says he is not concerned about active colitis and that FCP can vary in the same person even within the same day. He also said if her stools are leaning on the constipated side than anything they test that stool for will be more concentrated and less diluted but not that there is more of it. He keeps telling me we need more data. Even after that when I say her bowel habits have changed from every day to every other, he says if I want to put her back on Lialda then he recommends scoping to see where things really are. I am trying not to be neurotic, but as you all understand all well, it is scary being off meds so I am on high alert for anything and everything that could be a sign.

I just went back and reread message, he also said small changes in FCP are not that informative and even in the best studies it does not correlate with mucosal healing 20-30% of the time.
 

crohnsinct

Well-known member
In general, 178 is not that high for colonic disease only but Celiac often returns with cal pro that high.

In general, colonic disease almost always presents with looser stools, mucus and in some, bleeding. So if she isn't having those symptoms, I wouldn't raise the alert past orange on the Colonic Crohn's side.

However, constipation is more a sign of small bowel disease and could even be a sign of ileal disease. Therefore, if I was going to test prior to putting her back on Liada, I would want an MRE to see if her disease is now showing in the small bowel.

Also, constipation is a symptom of celiac (what isn't really). So given the new constipation and the increasing cal pro and if this result is higher than you are comfortable with I would at least add an upper endoscopy to confirm that her celiac is improving and not to be wasting health care dollars and adding any risks but heck since you are putting her under for endoscopy I would add in a lower scope to look at her colon. It would just stick to do MRE and upper scope only tot have more inconclusive information and have to go back later to do lower scope.

Lastly, constipation is the number one cause for physician visits. It's causes are varied and complex. If her cal pro is normal and your GI is sure that her Celiac is well controlled it could be from a variety of different issues. Many IBD patients have an IBS overlay and with similar symptoms it makes it hard to figure out what is causing what. It could be diet, stress, dehydration...the list goes on.

The worst part is waiting for those darned results!

Oh and yes! In every study I have read there is a high degree of variability in day to day samples and even in same day samples. My daughter was once up around 700-800 and/or weeks later without us changing anything was in the 200's. Calpro is a tool but it isn't everything.
 
In general, 178 is not that high for colonic disease only but Celiac often returns with cal pro that high.

In general, colonic disease almost always presents with looser stools, mucus and in some, bleeding. So if she isn't having those symptoms, I wouldn't raise the alert past orange on the Colonic Crohn's side.

However, constipation is more a sign of small bowel disease and could even be a sign of ileal disease. Therefore, if I was going to test prior to putting her back on Liada, I would want an MRE to see if her disease is now showing in the small bowel.

Also, constipation is a symptom of celiac (what isn't really). So given the new constipation and the increasing cal pro and if this result is higher than you are comfortable with I would at least add an upper endoscopy to confirm that her celiac is improving and not to be wasting health care dollars and adding any risks but heck since you are putting her under for endoscopy I would add in a lower scope to look at her colon. It would just stick to do MRE and upper scope only tot have more inconclusive information and have to go back later to do lower scope.

Lastly, constipation is the number one cause for physician visits. It's causes are varied and complex. If her cal pro is normal and your GI is sure that her Celiac is well controlled it could be from a variety of different issues. Many IBD patients have an IBS overlay and with similar symptoms it makes it hard to figure out what is causing what. It could be diet, stress, dehydration...the list goes on.

The worst part is waiting for those darned results!

Oh and yes! In every study I have read there is a high degree of variability in day to day samples and even in same day samples. My daughter was once up around 700-800 and/or weeks later without us changing anything was in the 200's. Calpro is a tool but it isn't everything.
You touched on it all so well, thank you! You're exactly right, the symptoms crossover so much with Celiac/IBS/IBD. I need to be patient but it is so hard.
 

Maya142

Moderator
Staff member
It is really tough, especially with Celiac in the mix. My daughter has Gastroparesis, IBD and IBS and is also on many medications (many of which list diarrhea as a common side effect). For the last year she has been having mystery diarrhea on and off.

We first thought it was IBD, then IBS, then medication and now we are back to IBS, though her GI isn't fully convinced.

Her FCP was 70. Not very high. But not totally normal for her.

So after several months of diarrhea on and off, we scoped. Found just a few healing ulcers in her terminal ileum and evidence of past inflammation, and that's it...MRE was clean too. So we are pretty certain it's not IBD.

Now whether it is IBS, a medication or food intolerance is anyone's guess. My daughter sometimes says it's stress and sometimes says she thinks it's food related.

But scopes were actually very useful for us because they told us that Cimzia was working for her IBD and we didn't need to be too worried about inflammation causing further complications.

crohnsinct, I know generally colitis causes diarrhea. But doesn't proctitis sometimes cause constipation? So technically you could have colitis and constipation, right?
 
It is really tough, especially with Celiac in the mix. My daughter has Gastroparesis, IBD and IBS and is also on many medications (many of which list diarrhea as a common side effect). For the last year she has been having mystery diarrhea on and off.

We first thought it was IBD, then IBS, then medication and now we are back to IBS, though her GI isn't fully convinced.

Her FCP was 70. Not very high. But not totally normal for her.

So after several months of diarrhea on and off, we scoped. Found just a few healing ulcers in her terminal ileum and evidence of past inflammation, and that's it...MRE was clean too. So we are pretty certain it's not IBD.

Now whether it is IBS, a medication or food intolerance is anyone's guess. My daughter sometimes says it's stress and sometimes says she thinks it's food related.

But scopes were actually very useful for us because they told us that Cimzia was working for her IBD and we didn't need to be too worried about inflammation causing further complications.

crohnsinct, I know generally colitis causes diarrhea. But doesn't proctitis sometimes cause constipation? So technically you could have colitis and constipation, right?

I am so glad the scopes gave you positive results and you saw healing and nothing alarming! It is truly fascinating and exhausting reading about all the variance and crossover. I know i am not qualified to say this, but my gut tells me if she was truly in a flare she would have diarrhea not constipation. Nonetheless I won't turn a blind eye. I am eager to run her Celiac blood panel next month to see where her numbers are, that should shed some light too hopefully.
 

crohnsinct

Well-known member
ARGH! My daughter has really bad proctosigmoiditis. It is the bane of my existence and yes when there is crossover with another condition you could go insane trying to figure it all out.

Proctosigmoiditis is pretty much always diarrhea and often bleeding. The colon is a drama queen. There is also lots of urgency and often mucus. Sometimes cramping in the lower left abdomen.

I think what you might be referring to is Tenesmus - That is when you feel like you need to go but the bowels are empty so nothing comes out. This is different than constipation where there is something that definitely needs to be passed but you can't for any number of reasons. I once asked the doctor if her sigmoid colon or rectum could be so inflamed that she couldn't pass a normal stool and I was told it would be pretty unlikely because that much inflammation in that area would usually result in diarrhea.

I guess there are exceptions to every rule but you know what they say abut horses ad zebras.

So now that my daughter is returning lower cal pro but still has tenesmus and lots of mucus but no diarrhea or bleeding, we are putting it down to IBS. But we know for sure that for the previous two years we were fighting a flare given the bleeding (talking fill the toilet with blood bleeding), diarrhea, accidents, high cal pro etc. Seems that Remade every 4 weeks was just what she needed.

Are you having fun yet?
 

crohnsinct

Well-known member
Wanted to add that at the time our GI told us that they more find people with left side colitis (does your daughter have disease there)might present with constipation than other areas of the colon.

He also said that constipation might be more present as a result of complication from Crohn's (colonic) rather than a symptom of it. So for example, you may get a stricture from scar tissue and if that happens then there could be difficulty passing a BM. Or if you have painful anal fissures you may hold a BM and that might lead to constipation. But even in the stricture case he felt strongly that you would pretty much have obvious signs of inflammation prior to the stricture forming i.e.: the diarrhea and if you have anal fissures or fissures you would know it.

Keep in mind all of this discussion was specific to Crohn's of the colon. The small bowel is a whole other kettle of fish. This is why when my second was diagnosed you would expect that I would be a little more prepared given my older daughter was three years in. NOPE! Older daughter had all colonic disease and younger daughter all small bowel. Older daughter is diarrhea and blood and younger daughter constipation and pain.
 
Wanted to add that at the time our GI told us that they more find people with left side colitis (does your daughter have disease there)might present with constipation than other areas of the colon.

He also said that constipation might be more present as a result of complication from Crohn's (colonic) rather than a symptom of it. So for example, you may get a stricture from scar tissue and if that happens then there could be difficulty passing a BM. Or if you have painful anal fissures you may hold a BM and that might lead to constipation. But even in the stricture case he felt strongly that you would pretty much have obvious signs of inflammation prior to the stricture forming i.e.: the diarrhea and if you have anal fissures or fissures you would know it.

Keep in mind all of this discussion was specific to Crohn's of the colon. The small bowel is a whole other kettle of fish. This is why when my second was diagnosed you would expect that I would be a little more prepared given my older daughter was three years in. NOPE! Older daughter had all colonic disease and younger daughter all small bowel. Older daughter is diarrhea and blood and younger daughter constipation and pain.
Interesting on the Tenesmus, something to keep in mind. She was patchy throughout entire colon. I don't even know if she is even technically considered constipation. She is not any discomfort and I know there are varying 'normal' frequencies, but her habits have changed so that is what has me on alert. I am currently ready to vomit, checked Labcorp portal this morning and results were sent to her Doctor. Hopefully hear something soon. I am hoping for the best, but preparing for the worst.
 
Oh man I know that feeling! Hang in there, you will have more info soon!
I cannot stop bawling, called my husband before he boarded a plane, my parents, and my next thought was to update here. Very happy tears, it came back at 36. I really believed it was going to come back abnormal.
 
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I still don’t know when I will feel comfortable taking IBD off the table, but we’re now at 4 months off meds, another month of weaning to 1 pill so steady since last May since we began trialing her to see if it could just be the Celiac.
 

my little penguin

Moderator
Staff member
That’s good
Love that news
Great she is doing well
Good to keep Crohns tucked away as long as everyone is watchful

And continues to monitor
 
That’s good
Love that news
Great she is doing well
Good to keep Crohns tucked away as long as everyone is watchful

And continues to monitor
Absolutely, I’m neurotic, nothing is off the table in my head and I will always have a watchful eye. Her stools have looked better since I took GF oats and these rice roller things she eats out of her diet in the last 2 weeks. The proteins are similar so starting to wonder if she can’t tolerate oat or we have a cross-contamination issue even know they are certified GF oats.
 

Maya142

Moderator
Staff member
That's great news!! I expect they will still monitor your daughter to make sure she does not have IBD, but for now, it seems like she is home free!

I think what you might be referring to is Tenesmus - That is when you feel like you need to go but the bowels are empty so nothing comes out. This is different than constipation where there is something that definitely needs to be passed but you can't for any number of reasons. I once asked the doctor if her sigmoid colon or rectum could be so inflamed that she couldn't pass a normal stool and I was told it would be pretty unlikely because that much inflammation in that area would usually result in diarrhea.
I think you are right CIC and I was thinking of tenesmus as a sort of constipation, but it is different.

My kiddo does have small bowel disease - but only in her terminal ileum. The rest of her MRE was clear. But she had inflammation through her entire colon - every single biopsy they took showed acute and chronic inflammation and she had ulcers in her rectum and left colon I believe.

Yet somehow, she presented with constipation!! No idea if that was caused by the small bowel disease, IBS or whatever :ybatty:. Crohn's is confusing.
 
That's great news!! I expect they will still monitor your daughter to make sure she does not have IBD, but for now, it seems like she is home free!



I think you are right CIC and I was thinking of tenesmus as a sort of constipation, but it is different.

My kiddo does have small bowel disease - but only in her terminal ileum. The rest of her MRE was clear. But she had inflammation through her entire colon - every single biopsy they took showed acute and chronic inflammation and she had ulcers in her rectum and left colon I believe.

Yet somehow, she presented with constipation!! No idea if that was caused by the small bowel disease, IBS or whatever :ybatty:. Crohn's is confusing.
Yes, we test FCP monthly, have been since May. This is just the first one I had a bad feeling about. Nothing’s changed, still monitoring.
 

crohnsinct

Well-known member
Wonderful News! :poop::poop::poop: I was refreshing the forum today as if I was looking at my own kids' portals.

My friend's daughter is Celiac and I know she had issues with certified gluten free oats....she says oats are a very controversial topic in the Celiac circles. It's worth a try I guess.

You could also try the usual constipation remedies.

Just so glad you can back down the alert level. I don't think we ever will be totally relaxed and not have IBD jump to the front of our minds.
 
Wonderful News! :poop::poop::poop: I was refreshing the forum today as if I was looking at my own kids' portals.

My friend's daughter is Celiac and I know she had issues with certified gluten free oats....she says oats are a very controversial topic in the Celiac circles. It's worth a try I guess.

You could also try the usual constipation remedies.

Just so glad you can back down the alert level. I don't think we ever will be totally relaxed and not have IBD jump to the front of our minds.
It’s really shameful how little information is given. We were at Duke at the time and were told to eat GF. I learned elsewhere we need to get new toaster, strainer, pans and utensils with scratches and that it hides in a zillion unexpected places. We are about 90% GF at home, it’s just easier than worrying about crumbs and cross-contamination.

You are so right, oats are very controversial as is cereal. Mechanically separated oats even certified ones I don’t 100% trust and many people react because the protein is similar. I wouldn’t have known had I not been tracking her stools so closely, she doesn’t have any stomach upset or reaction, but they are coming out undigested.
 
I just looked at a Crohn’s and Colitis Foundation event next Saturday, her last GI is the Chair and opening speaker and her newest GI that thinks only Celiac is presenting on lastest research updates. I’ve dreamt of getting them in the same room. I’ll be supressing my desire to corner them if I go. Haha
 
We have an appointment tomorrow for follow-up from May. I just picked her up from school early with headache, sore throat and stomach pains. Diarrhea twice since we got home with evidence of last nights veggies in it. Ironically the nurse just called me with her FCP results which was normal again at 30. That makes me worry a tad less. Her CRP and sed-rate were good, but her WBC and neutrophils were raised on bloodwork. I don't think she got glutened so hoping this is just a bug of some sort. I didn't learn much googling WBC and neutrophils, I know it can be a sign of IBD inflammation, but the other tests are coming back fine and symptom-wise she's been fine until today.
 

Maya142

Moderator
Staff member
Could definitely be a virus - that would be my guess given the high WBC and sore throat. Hope the appt. goes well tomorrow!
 

crohnsinct

Well-known member
Same! Poor kid. I hope it moves through quickly and the rest of the family stays healthy.

Wowsa! Two normal cal pro's in a row and solidly normal! That is amazing news!
 
Could definitely be a virus - that would be my guess given the high WBC and sore throat. Hope the appt. goes well tomorrow!
Thank you! I wasn't sure how that works, the blood draw was a couple weeks ago when she was seemingly fine. The virus symptoms just started yesterday. The FCP was delayed and took a lot longer than the blood results so it was just coincidence I got the result loaded on the day she came home sick. Her stomach has been fine so far but still has sore throat, hoping just a virus too.
 
Same! Poor kid. I hope it moves through quickly and the rest of the family stays healthy.

Wowsa! Two normal cal pro's in a row and solidly normal! That is amazing news!

It's actually been more than 2 woohoo, very curious to see what her GI has to say today on the Celiac versus Celiac/Indeterminate Colitis debate. Sometimes I think about our path and get so upset. I just can't wrap my head around the fact that I could have blindly listened to the first GI that said the Celiac was a false positive and not treated it. She would have taken the meds and not gotten better and likely had to move on to stronger as we weren't treating the correct disease or possible under-treating if she does end up having both.
 

Maya142

Moderator
Staff member
Thank you! I wasn't sure how that works, the blood draw was a couple weeks ago when she was seemingly fine. The virus symptoms just started yesterday. The FCP was delayed and took a lot longer than the blood results so it was just coincidence I got the result loaded on the day she came home sick. Her stomach has been fine so far but still has sore throat, hoping just a virus too.
Hmmm...the blood draw was several weeks ago and she had a high WBC? Does anyone know if WBC goes up before symptoms show up - tagging crohnsinct.

My guess is still a virus but it is a bit weird that her blood work showed a high WBC weeks ago when she had no symptoms.

Oddly enough, my daughter has had a high WBC and lymphocytes for the last two months. No symptoms that we could tell. Her GI felt that since she is very immunosuppressed, we should do a full work-up. That includes repeat blood work, chest x-ray and urine tests. Normally stool tests too, but her stools are fine, so we're not suspecting a GI illness. Her GI thought it may be a low grade UTI since M mentioned "it sometimes hurts" when she pees (yes, she never thought to tell us - she says it isn't bad pain so she just didn't think it was important :ybatty:).

Your daughter is not immunosuppressed and does have a sore throat...so my guess is still virus. But just wanted to mention it.
 
Hmmm...the blood draw was several weeks ago and she had a high WBC? Does anyone know if WBC goes up before symptoms show up - tagging crohnsinct.

My guess is still a virus but it is a bit weird that her blood work showed a high WBC weeks ago when she had no symptoms.

Oddly enough, my daughter has had a high WBC and lymphocytes for the last two months. No symptoms that we could tell. Her GI felt that since she is very immunosuppressed, we should do a full work-up. That includes repeat blood work, chest x-ray and urine tests. Normally stool tests too, but her stools are fine, so we're not suspecting a GI illness. Her GI thought it may be a low grade UTI since M mentioned "it sometimes hurts" when she pees (yes, she never thought to tell us - she says it isn't bad pain so she just didn't think it was important :ybatty:).

Your daughter is not immunosuppressed and does have a sore throat...so my guess is still virus. But just wanted to mention it.
Yes, blood was done on 10/26 and stool dropped off that day also. I agree, I wish I had an obvious symptom to tie it to back then. Glad we have an appointment today.
 
Appointment went well. He was not concerned with WBC/neutrophils since they were only slightly raised. He continues to say "we are testing a hypothesis". He believes it is only Celiac and so far the labs and lack of symptoms support that, but IBD isn't ruled out. He said after 6 months of monthly FCP that have been 'normal' we can let our guard down a little and go every 2-3 months now for a year.
 
Hi all! I haven't checked in in a very long time, but I thought of this group as we just got a fecal calprotectin back that was <16. It's been 4 years since I last posted and she has been on no meds. It was just Celiac! We checked FCP monthly for about 6 months and then stretched it out, we have been at once a year last couple of years. It turns out her colon inflammation was from long-term untreated Celiac, she has only been on a GF diet since. Funny to read my old stats, she is now 5'6" and 110lbs at 15. I wanted to update, I know our case is highly unusual, but the takeaway is to always ask lots of questions and don't be afraid to seek out 2nd or 3rd opinions! I still think about what would have happened had I listened to the first GI, she would have been eating gluten, taking meds she didn't need, and presumably wouldn't be improving.
 

crohnsinct

Well-known member
WONDERFUL NEWS! Also very helpful update for others traveling the same path. Thanks and good luck! I hope we don't have to see you hear again!
 
Had they tested her at all for celiac previously? What is the history there? And HOORAY for a diagnosis with a solution.
 
Had they tested her at all for celiac previously? What is the history there? And HOORAY for a diagnosis with a solution.
They had, I am sure I had many posts back in the day. Basically Celiac bloodwork was off the charts and had textbook villi atrophy in endoscopy, yet her first GI said it was a false positive which really doesn't happen. She had some patchy surface colon inflammation also so he said it was IBD and would likely develop into Crohn's. Her MRE was clear and her FCP wasn't that high, maybe 178 I think. The second GI said Celiac for sure and Indeterminate Colitis (which is essentially what first implied). Third GI was maybe 6 months after and said he suspects she only has Celiac and that is when we did the monthly FCP for 6 months and stretched out from there. He had seen other cases where undiagnosed Celiac had caused issues in colon similar to hers. I understand why the second said Indeterminate and Celiac as it presented that way, but I'll never understand the first that said false positive on Celiac. Even in the years since they diagnosed the Celiac world has changed a ton, the gold standard used to be endoscopy, but now they know how patchy the villi damage is that the bloodwork is the most accurate and what most of the world uses exclusively when the results are clear.
 
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Location
San Diego
Excellent! This is a good example of what I keep cautioning people (especially undiagnosed people) - that FCP in an inflammation marker and not a Crohn's or UC marker. And there are other causes of gut inflammation besides IBD, including celiac. And celiac disease is about 3-fold more common than Crohn's.
 
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