10yo diagnosed with IBD/Celiac?

[Carolina*]

Hello all,

My 10yo daughter has been just diagnosed with IBD and I am hoping we will get to a definitive diagnosis this week. It's been a real roller coaster over the last week and I am so thankful for this forum. I have been researching and reading non-stop.

My daughter has had 3 rounds of diarrhea since last spring, 2 for sure including blood and unsure about the other along with abdominal pain and headaches. Initially she had just been tested for infection which were all negative. After her recent flare-up we got an appointment with a Pediatric GI quickly. The initial blood work came back as Celiac with 4 of 6 tests positive. I was educating myself on that diagnosis and then 2 days later she had her colonoscopy/endoscopy and things shifted a bit. Her GI said it is 100% IBD, favoring Crohn's but would know more after biopsy results, and he thinks the Ceilac was a false positive from IBD.

I was devastated hearing that and turned all my research to IBD. The biopsy is favoring Crohn's because (1) there is no active colitis in the hepatic and transverse colon and (2) mild acute terminal illeitis (no fissures, fistulas, granulomas, or dysplasia identified). HOWEVER, after talking to a dear friend with UC and reading, Pediatric cases can be atypical and not follow the "bottom up" pattern and it *could* be "backwash ileitis". I asked her GI if this is true and he said yes. We started the appointment with it's Crohn's and then he said "75/25 or maybe 60/40 Crohn's". She has an MRI on Wednesday to better see the small intestine.

I want to be careful how I word things to not appear insensitive or like I am minimizing UC, but I am REALLY praying this ends up as UC and not Crohn's because it seems like that will come with a few less long-term challenges.

I had hoped with bloody stools and that she has been steady on her growth curve since birth (75% height) that those would be encouraging signs pointing more towards UC. She is very, very thin but it's never concerned me because she has a large appetite and I was also very thin as a kid.

I am not sure what I am asking exactly, but if anyone has anything to add that I should be thinking about I would love to hear it. I so appreciate anyone that took the time to read. Health and happiness to all!

 

[my little penguin]

Make sure is an MRE (MRI with entrography) also ask about a capsule endoscopy(pill cam) so the small intestine can be visually reviewed
Crohns or UC both are treated the same in kids and tend to be very agressive
The only difference would be in terms of a Jpouch or not when having surgery
Adults tend to have a milder disease course compared to kids
And kids can have an even more severe course with UC than Crohns

At least based on parents here for the last 7 years or so

Terminal ileum is the number one spot for pediatric Crohns
And kids tend to present with pan colitis for UC

As far as diarrhea
It's 50/50
Have the kids here have bloody diarrhea and half have constipation and still have Crohns

You can have celiac and Crohns
So please get a second opinion at a top pediatric ibd hospital
Top three in the US
Are children's of Philadelphia
Boston children's
And Cincinnati children's

All will do a records review (no visit required)

What's important is getting treatment
Starting with rescue med of steriods /exclusive enteral nutrition (formula only )
And then maintence meds
Majority of kids need immunosuppressants
To start such as
6-mp/aza/mtx

Most GI use mtx now since lymphoma risk is higher with 6-mp/aza
Some do top down
Biologics first
Remicade /humira

Weight
Most kids require extra calories regardless
Formula een or supplemental en
Can use peptamen jr or peptide
Some kids need elemental (amino acid based)
Such as elecare or neocate jr


Ds was dx at age 7
He is now almost 14 so being doing this a very very long time

He currently is on
Mtx / Stelara and IVIG plus drinks neocate jr

He started on pentasa (which is useless and not even recommended for monotherapy of Crohns -never knew this at the time )
And he has moved through all the drugs

He was on humira for over 5 years

Good luck

Tagging Maya142
Mehita
Clash
Jmrogers
Pilgrim
Farmwife

 

[Carolina*]

Make sure is an MRE (MRI with entrography) also ask about a capsule endoscopy(pill cam) so the small intestine can be visually reviewed
Crohns or UC both are treated the same in kids and tend to be very agressive
The only difference would be in terms of a Jpouch or not when having surgery
Adults tend to have a milder disease course compared to kids
And kids can have an even more severe course with UC than Crohns

At least based on parents here for the last 7 years or so

Terminal ileum is the number one spot for pediatric Crohns
And kids tend to present with pan colitis for UC

As far as diarrhea
It's 50/50
Have the kids here have bloody diarrhea and half have constipation and still have Crohns

You can have celiac and Crohns
So please get a second opinion at a top pediatric ibd hospital
Top three in the US
Are children's of Philadelphia
Boston children's
And Cincinnati children's

All will do a records review (no visit required)

What's important is getting treatment
Starting with rescue med of steriods /exclusive enteral nutrition (formula only )
And then maintence meds
Majority of kids need immunosuppressants
To start such as
6-mp/aza/mtx

Most GI use mtx now since lymphoma risk is higher with 6-mp/aza
Some do top down
Biologics first
Remicade /humira

Weight
Most kids require extra calories regardless
Formula een or supplemental en
Can use peptamen jr or peptide
Some kids need elemental (amino acid based)
Such as elecare or neocate jr


Ds was dx at age 7
He is now almost 14 so being doing this a very very long time

He currently is on
Mtx / Stelara and IVIG plus drinks neocate jr

He started on pentasa (which is useless and not even recommended for monotherapy of Crohns -never knew this at the time )
And he has moved through all the drugs

He was on humira for over 5 years

Good luck

Tagging Maya142
Mehita
Clash
Jmrogers
Pilgrim
Farmwife

Thank you so much for responding! I am less than a week in and I have much to learn. That is comforting to know that Crohn's can be the less severe option. She is on supplemental shakes 4+ a day and we started a gluten-free diet. She is taking Lilada but I see that should probably be changed if the MRI gives us a definitive Crohn's diagnosis. I've learned a lot more since her appointment a few days ago about the top down approach on medication. Obviously I know she is still sick on the inside but the outward signs are gone and all she wants to do it eat but I don't know that that is good if I am supposed to be resting her intestines.

 

[Maya142]

I responded on your other thread but wanted to add about weight gain - formula really works and it will also help with growth and development. Some kids do Exclusive Enteral Nutrition or EEN (100% formula, no food for 6-8 weeks) to induce remission while other kids get supplemental EN in addition to their food for weight gain and growth and nutrition.

EEN works like steroids but mucosal healing is actually better than with steroids.

The most palatable formulas are Ensure, Boost and Pediasure. Those are polymeric and sometimes kids with IBD cannot tolerate them. My daughter could not tolerate them - they caused diarrhea for her.

Pediasure Peptide and Peptamen Jr. are semi-elemental - more broken down and easier to tolerate. Most kids with IBD can tolerate semi-elemental formulas. They do taste worse than Boost/Ensure, but kids are able to get used to the taste or use feeding tubes.

Finally, there are elemental formulas, which are broken down into amino acids. They do not taste good. My daughter was completely unable to drink them and needed a feeding tube. Some kids are able to get used to the taste, but most kids need tubes. A feeding tube sounds very scary and intimidating but like everything, you get used to them. My daughter now says having a tube is WAY better than having to drink formula, and she is never drinking it again !

 

[my little penguin]

Ds drank peptamen jr as een twice then as supplemental en
He had to switch to neocate jr
But is able to drink his all orally no tube
But as Maya142 said
Mostcan not drink neocate jr orally
Even the GI was shocked

It has kept his weight and growth on track with his peers

 

[Carolina*]

She is drinking 4 of the boost breeze juice boxes, she did not like the boost/ensure/pediasure shakes. She feel good and doesn’t seem sick though we obviously know she is. She wants to eat large amount of food in addition to the juices. She’s always had a big appetite that shocked people. Just hope she isn’t eating too much solid food.

 

[Maya142]

I meant to add - my kiddo was also always a thin kid. After being diagnosed with Crohn's, she slowly began losing weight. Over a couple of years, she lost more than 25 lbs and became severely underweight and malnourished.

So underweight, in fact, that she was hospitalized several times, developed an arrhythmia due to the weight loss and we were told that if she continued to lose weight, her organs would begin to shut down.

She was 18 by then and very stubborn, but finally after hearing that her organs could shut down, agreed to a feeding tube. Within weeks, she felt a whole lot better. After several months, she was no longer underweight.

Fast forward to now, and she is a healthy weight - no longer the "skinny kid" that she always was. She has a lot more energy and just feels a whole lot better.

Kids with IBD, especially Crohn's, often have trouble with absorption which is why formula can make such a big difference. In other countries, EEN is usually a first-line treatment and it is actually becoming more popular in the US as a treatment to induce remission, instead of steroids.

 

[my little penguin]

Yep Ds was constantly hungry and eating solids
Just didn't absorb them so he lost weight and ped labeled the problem "just a thin kid"
Formula plus food plus the right meds fixed that issue

 

[Carolina*]

Yep Ds was constantly hungry and eating solids
Just didn't absorb them so he lost weight and ped labeled the problem "just a thin kid"
Formula plus food plus the right meds fixed that issue

I just wanted to make sure I wasn’t harming her intestines more by not allowing them to rest if that even makes any sense.

 

[my little penguin]

If your trying to induce remission with formula (in her case complete nutrition - not sure resource breeze is complete nutrition)
Then she would need to drink all formula and no food
That would be closer to 8 shakes a day (2000 or more your doc would tell you )
Een is done for 6-8 weeks to heal the gut
Once healed and maintenance med takes over (both een or steriods plus maintenance meds are started at the same time )
Then most switch to partial enn
So your kiddo drinks 1-4 shakes a day plus as much food as they want

With maintenance meds

 

[Carolina*]

If your trying to induce remission with formula (in her case complete nutrition - not sure resource breeze is complete nutrition)
Then she would need to drink all formula and no food
That would be closer to 8 shakes a day (2000 or more your doc would tell you )
Een is done for 6-8 weeks to heal the gut
Once healed and maintenance med takes over (both een or steriods plus maintenance meds are started at the same time )
Then most switch to partial enn
So your kiddo drinks 1-4 shakes a day plus as much food as they want

With maintenance meds

Oy, I have no idea why we were given the treatment plan we were then. I am getting a 2nd opinion for peace of mind regardless. Our Doctor is well regarded, supposedly first in US to do the fecal transplant I believe he said. Losing confidence after reading all this though!

 

[my little penguin]

https://www.ncbi.nlm.nih.gov/m/pubmed/28575325/

Een
https://www.naspghan.org/files/docu...nteral_Nutrition_for_the_Control_of.29[1].pdf

 

[Maya142]

Fecal transplants are in trials for IBD but as far as I know, they are not doing so well for Crohn's at least. They work well for CDiff infections but are usually used after antibiotics have failed or after the patient has had CDiff multiple times.

For IBD, you really need a maintenance medication - either an immunomodulator like Imuran or Methotrexate or a biologic like Humira or Remicade, or both.

 

[Carolina*]

Fecal transplants are in trials for IBD but as far as I know, they are not doing so well for Crohn's at least. They work well for CDiff infections but are usually used after antibiotics have failed or after the patient has had CDiff multiple times.

For IBD, you really need a maintenance medication - either an immunomodulator like Imuran or Methotrexate or a biologic like Humira or Remicade, or both.

Yes, he said the fecal transplant failed. I should have been more clear, I meant it more that it gave me hope he was on the pulse of current research and possibly a stronger Doctor overall. He initially wanted to start with steroids and supplemental nutrition, but by that he meant the boost shakes not the others and a gluten-free diet. Given that we aren't 100% on diagnosis yet between UC and Crohn's maybe that is why he was okay starting with the 5-ASA over the stronger? I don't know, I am certainly more confused than ever. He was okay with doing the step-up approach. I understand more since then that many Doctors are suggesting the opposite now.

 

[Maya142]

It is more common to do the top down approach but it really also depends on the GI and your child's disease. If it is mild, some doctors are ok with doing the step-up approach. Others prefer to use top down to get the disease under control quickly, to prevent complications like strictures, fistulae, abscesses etc.

With kids there is also the added concern of growth and development, so the top down approach is used a lot more than in adults.

5-ASAs are used often in UC but not in Crohn's. They don't work well for Crohn's because in Crohn's the inflammation is transmural - through all layers of the bowel. In UC, it's just the surface layer, so topical meds like Lialda sometimes work well.

For Crohn's, some GIs say that giving 5-ASAs is the same as giving aspirin for a brain tumor- won't hurt, but it won't help.

We went with the top down approach since my daughter was already on a biologic for her juvenile arthritis (one that did not work for Crohn's). She was put on Remicade and Methotrexate immediately. 8 months later, her scopes looked MUCH better - ALL the ulcers in her colon were gone - had healed - and her TI also looked much better, though biopsies still showed mild inflammation. Her GI said that her colon looked perfect!

Overall, it was an incredible improvement!

I'm glad you are getting a second opinion - a second pair of eyes can be very helpful.

 

[Carolina*]

It is more common to do the top down approach but it really also depends on the GI and your child's disease. If it is mild, some doctors are ok with doing the step-up approach. Others prefer to use top down to get the disease under control quickly, to prevent complications like strictures, fistulae, abscesses etc.

With kids there is also the added concern of growth and development, so the top down approach is used a lot more than in adults.

5-ASAs are used often in UC but not in Crohn's. They don't work well for Crohn's because in Crohn's the inflammation is transmural - through all layers of the bowel. In UC, it's just the surface layer, so topical meds like Lialda sometimes work well.

For Crohn's, some GIs say that giving 5-ASAs is the same as giving aspirin for a brain tumor- won't hurt, but it won't help.

We went with the top down approach since my daughter was already on a biologic for her juvenile arthritis (one that did not work for Crohn's). She was put on Remicade and Methotrexate immediately. 8 months later, her scopes looked MUCH better - ALL the ulcers in her colon were gone - had healed - and her TI also looked much better, though biopsies still showed mild inflammation. Her GI said that her colon looked perfect!

Overall, it was an incredible improvement!

I'm glad you are getting a second opinion - a second pair of eyes can be very helpful.

Thank you again for your help, it is very much appreciated. At that appointment I wanted so badly to make her diagnosis UC over Crohn's, but I am already learning here the the variance is so large and that there is no "better diagnosis" for kids. Hopefully this will all be settled once we have the MRI. I know he called her case moderate and I understand she is sick on the inside and that kids can be asymptomatic but still very sick. She feels great and you otherwise wouldn't think anything was wrong. She is not losing weight and is growing well. I already have a 2nd opinion scheduled but unfortunately it is a few weeks out. I call often to see if they've had any cancellations.

 

[Jmrogers4]

Welcome and sorry you had to join us, my son was diagnosed at 10 years old, he is now 18 and a freshman in college. We've done EN as supplemental and as total to induce remission and he followed on height/growth until all of the sudden he didn't just pretty much stopped growing all together which was his only symptom at the time. This was after diagnosis and we all thought the maintenance med (Imuran) was controlling his Crohn's at least lab work indicated that but as you have kind of figured out the only thing typical of pediatric Crohn's is there is no typical. After MRE showed inflammation at TI and in small intestine he was switched to Remicade and has truly been in remission since then. But he was labeled as just a small skinny kid, doctors figured he took after me as I'm not very tall. Once he was in remission he just took off he is now over 6 feet and still growing. He is still a skinny kid but a healthy skinny kid and it's not until I look back at pictures that I realize how skinny he really was. It's hard to see things right in front of you as they are happening as they truly become normalized.
My son didn't even realize there was pain until there wasn't if you know what I mean as it just became how he felt over time and didn't realize that it wasn't normal. I don't know if that makes since but a lot of little things have added up in hindsight that were very easy to brush aside at the time.

 

[Carolina*]

Welcome and sorry you had to join us, my son was diagnosed at 10 years old, he is now 18 and a freshman in college. We've done EN as supplemental and as total to induce remission and he followed on height/growth until all of the sudden he didn't just pretty much stopped growing all together which was his only symptom at the time. This was after diagnosis and we all thought the maintenance med (Imuran) was controlling his Crohn's at least lab work indicated that but as you have kind of figured out the only thing typical of pediatric Crohn's is there is no typical. After MRE showed inflammation at TI and in small intestine he was switched to Remicade and has truly been in remission since then. But he was labeled as just a small skinny kid, doctors figured he took after me as I'm not very tall. Once he was in remission he just took off he is now over 6 feet and still growing. He is still a skinny kid but a healthy skinny kid and it's not until I look back at pictures that I realize how skinny he really was. It's hard to see things right in front of you as they are happening as they truly become normalized.
My son didn't even realize there was pain until there wasn't if you know what I mean as it just became how he felt over time and didn't realize that it wasn't normal. I don't know if that makes since but a lot of little things have added up in hindsight that were very easy to brush aside at the time.

I absolutely do understand what you are saying. My daughter had 2 ear surgeries in 1st grade and has hearing loss in her left ear. She also has tons of allergies and takes sublingual allergy drops. Now we get to add Celiac and IBD. I often think to myself that this kid has no clue what normal is on so many levels. I deal with that fact with her ears all the time, I remind people she has no clue what normal sounds like. I am looking forward to the MRI in a couple days and seeing what that tells us. I know she's being medicated as UC/Celiac until the MRI, my husband reminded me that he did say that will change if MRI tells us Crohn's. We both pick up on different pieces of the puzzle so so helpful having 2 sets of ears. I keep getting frustrated with myself, but then I remember I have only known there was a problem for 6 days and I've gone from knowing nothing of these diseases to quite a bit in that time, especially given the unclear diagnosis and variance for kids. I'll be keeping a close eye on her weight without it becoming a "thing", don't need more problems. In the meantime, thankful she's been tall and steady on the growth curve though I understand that may change. She's a ballerina so I see her in tights and leotard often and amongst others often.

 

[Jmrogers4]

I'm sure Mehita will chime in once she checks in her son has celiacs and crohn's so she may have some more unique insights. Good luck on the MRE and you are doing everything you should be and it takes a while to come to terms with any IBD diagnosis. There is a grieving period and a steep learning curve. You are doing fantastic, keep your chin up and one step at a time. We are here for support, questions or just someplace to vent.
Please keep us updated.

 

[Carolina*]

I'm sure Mehita will chime in once she checks in her son has celiacs and crohn's so she may have some more unique insights. Good luck on the MRE and you are doing everything you should be and it takes a while to come to terms with any IBD diagnosis. There is a grieving period and a steep learning curve. You are doing fantastic, keep your chin up and one step at a time. We are here for support, questions or just someplace to vent.
Please keep us updated.

It's funny, I was hoping the MRE would give us a definitive UC diagnosis but now I read here that that isn't necessarily the better diagnosis for kids like it can be for adults. I don't know what I want that darn thing to tell us at this point.

 

[Carolina*]

Hello again. My daily call to the 2nd opinion Doctor finally paid off and we have an appointment today versus waiting another month. It is not completely ideal given she doesn't have her chart prior and the MRE isn't until tomorrow, but I still wanted to take advantage of the opening.

With permission we have been recording visits which has been invaluable re-listening after you learn more. He does mention the EEN and now I understand that that is not what we are doing with the gluten-free diet and 4 shakes. We talked about the different approaches (step-up versus top-down) more than I remembered. He said he does believe in the top-down method but her case was mild and he doesn't believe that is necessary for her. That is how we left with the gluten-free diet treating the top (hopefully) along with shakes and the 5-asa treating the colon. Most of her colon is affected, but there are no fistulas, no fissures and no granulomas, etc. He does say the medication will change if we see more after the MRE results, but for now he was comfortable treating it as Celiac and UC.

If anyone sees red flags with that or has anything to add that would be of value for her appointment today, please let me know. I am printing everything off and putting in a binder and will plan to give her a summary to date and I suppose ask her what treatment plan she would recommend for UC/Celiac versus Crohn's. I know Celiac/Crohn's is a possibility too. We are already comfortably in the gluten-free diet so that piece has been dealt with whether it is necessary or not. We'll continue regardless. Thank you again, I appreciate everyone so much for taking the time to read and be so willing to help.

 

[Maya142]

If it's UC, then a 5-ASA is not a bad choice. But if there is ANY doubt that it's Crohn's and considering she had inflammation in her TI, I'm surprised he isn't calling it Crohn's, then I'd want her to be on at least an immunomodulator.

The MRE should give you more information.

If you do try a 5-ASA, then it should work within a month. If it hasn't worked in a month, then I would push for something else - Methotrexate, Imuran or even a biologic.

Have biopsies confirmed that she has Celiac disease? Because unless she has Celiac disease, going gluten free isn't really a treatment.

I guess my big questions would be - UC vs. Crohn's, does she have Celiac, if there is any chance she has Crohn's, shouldn't we be treating with a medication that is shown to be effective for Crohn's (as a monotherapy, 5-ASAs are NOT effective for Crohn's).

I would also ask how common it is to have inflammation in the TI if it's UC. And you say most of her colon is affected - in UC, inflammation tends to be continuous, while in Crohn's it tends to be patchy ("skip lesions").

Good luck!

 

[Carolina*]

If it's UC, then a 5-ASA is not a bad choice. But if there is ANY doubt that it's Crohn's and considering she had inflammation in her TI, I'm surprised he isn't calling it Crohn's, then I'd want her to be on at least an immunomodulator.

The MRE should give you more information.

If you do try a 5-ASA, then it should work within a month. If it hasn't worked in a month, then I would push for something else - Methotrexate, Imuran or even a biologic.

Have biopsies confirmed that she has Celiac disease? Because unless she has Celiac disease, going gluten free isn't really a treatment.

I guess my big questions would be - UC vs. Crohn's, does she have Celiac, if there is any chance she has Crohn's, shouldn't we be treating with a medication that is shown to be effective for Crohn's (as a monotherapy, 5-ASAs are NOT effective for Crohn's).

I would also ask how common it is to have inflammation in the TI if it's UC. And you say most of her colon is affected - in UC, inflammation tends to be continuous, while in Crohn's it tends to be patchy ("skip lesions").

Good luck!

I am with you 100% on all of this. Hopefully a lot of the uncertainty will be gone once we get the MRE results. The blood tests and biopsy are consistent with Celiac, but both could also be consistent with Crohn's is what I am learning which is why he said it could be a false positive caused by the IBD. Yes, even Doctor 1 says if MRE shows Crohn's then 100% medications change from the 5-ASA. I do understand that is not treatment for Crohn's, we are absolutely treating her as UC/Celiac at the present time. He explained the TI inflammation *could be* backwash ileitis from the colon, but if we see more on MRE then we know it is in the small intenstine too and are absolutely left with Crohn's. I don't know how common it is, but I've read lots of studies on the backwash ileitis and how to determine UC/Crohn's in that case so I would think it wouldn't be that rare?

 

[my little penguin]

Backwash tends to more rare in kids
You have to understand some GI won't dx Crohns
Unless pathology dx Crohns
To make matters worse pathology will not check the Crohns dx box unless they find granulomas
Which are only found 30% of the time
Even in folks with proven Crohns

I would want an MRE AND a capsule endoscopy
Since the MRE may not show what really going on
Also I have not heard of any kiddo being dx with UC with based on terminal ileum inflammation

Has bloodwork improved since starting 5-asa?
Ds got worse

 

[Carolina*]

Backwash tends to more rare in kids
You have to understand some GI won't dx Crohns
Unless pathology dx Crohns
To make matters worse pathology will not check the Crohns dx box unless they find granulomas
Which are only found 30% of the time
Even in folks with proven Crohns

I would want an MRE AND a capsule endoscopy
Since the MRE may not show what really going on
Also I have not heard of any kiddo being dx with UC with based on terminal ileum inflammation

Has bloodwork improved since starting 5-asa?
Ds got worse

Thank you for reading and I appreciate feedback. When we started down this road a week ago I had thought UC was the "better" option. I understand now that is not the case. When I started this post I feel like I presented the info and was looking for hope that it could in fact end up being UC. Doctor 1 does think it is Crohn's, he admitted there was a chance it was UC but still in the end does believe it is likely Crohn's. We met with Doctor 2 today. She 100% believes the Celiac is correct and does not believe it is a false positive like Doctor 1. She also said it is favoring Crohn's but we don't really know. She said after the MRE tomorrow we may definitely know it is Crohn's, but I suspect it is going to look good because usually when the terminal ileum is affected it is in bad shape and hers is very mild (forgive my layman terms of explaining). She said even if it does look good like I suspect, we will not call it UC because it could still be Crohn's and we will just have to wait and see how it evolves over time. If the small intestine looks good, she supported the 5-ASA for 2 month time for her "mild to moderate case" and if not improved than would try new med. If the small bowel is affected then she would switch her med immediately. I made it perfectly clear at this appointment that I was over my fear of meds and to tell me the best course of action, versus Doctor 1 could tell I was not wanting to "hit it hard". As an aside, she has gained 3lbs in the last few days since we began supplementing with shakes...wow!

 

[Farmwife]

Hi and a late welcome.
MY girl was dx at 3.
We also went back and forth with doctors on uc vrs crohns.
She still had to be treated while they questioned what she has.
Shes on Remicade now with Imuran. Works great!

That's great to hear about the weight gain.
I hope it all continues to improve.
I've learned early on that comparing uc to crohns is futile.
They're both bad!

 

[Jmrogers4]

Good luck with MRE today, hoping for solid answers for you all.

 

[Carolina*]

Good luck with MRE today, hoping for solid answers for you all.

We finally got some good news, everything looked good on the MRE! Made me feel even better about our new Doctor who predicted that and also believes in the Celiac Diagnosis results. She said there is no way it’s a false positive with values that high. So for now we are doing nutrition shakes alongside a gluten-free diet (I know this isn’t EEN) and Lialda. Testing again in December. She’s officially on the ‘normal’, that 3lbs weight gain in a week took her from 2% to 6% too. We are watching her closely for any changes. So for now we stay as indeterminate IBD and see how it evolves. The patchy colon won’t allow them to call it UC with certainty.

 

[Carolina*]

Hi and a late welcome.
MY girl was dx at 3.
We also went back and forth with doctors on uc vrs crohns.
She still had to be treated while they questioned what she has.
Shes on Remicade now with Imuran. Works great!

That's great to hear about the weight gain.
I hope it all continues to improve.
I've learned early on that comparing uc to crohns is futile.
They're both bad!

I hear you, we just want things to fit in neat little boxes and it just doesn’t work that way. I hope your daughter continues to do well!

 

[Maya142]

Glad you have a plan!! Good luck and keep us updated!

 

[my little penguin]

Good luck with the plan !!!

 

[Carolina*]

Hey all! Well it’s been almost a month and she’s still feeling good (knock on wood). I do want to start understanding and preparing myself for her blood work in December. I know with the celiac piece her numbers were so high and <100 is the highest level so it may have gone down but we may not know right away. As for the IBD, what will they be looking at to determine if the Lialda is working? Sed Rate, Westergren/WBC/calprotectin? Those were her only values that were off that I recall. I know I can’t trust the lack of symptoms since she would go a few months in between before diagnosis.

 

[Maya142]

CRP is also used - that is a blood test, similar to Sed rate (ESR). Fecal Calprotectin is generally pretty accurate, so that will give you some good info, like you said. Has it ever been tested before?

Glad she is feeling good!

 

[Carolina*]

CRP is also used - that is a blood test, similar to Sed rate (ESR). Fecal Calprotectin is generally pretty accurate, so that will give you some good info, like you said. Has it ever been tested before?

Glad she is feeling good!

Thank you! Yes, she was tested about a month ago for the Fecal Calprotectin and everything else it seemed, lots of tests. Her CRP was 0.99 just inside of normal of 1.0. I remember that one off the top of my head.

 

[Mehita]

How are things going, Carolina*? Sorry for not responding sooner. I'm not getting the tags and haven't been checking in much lately. My son was dx'd with both Celiac and Crohn's nine years go. Please feel free to ask questions!

 

[Carolina*]

How are things going, Carolina*? Sorry for not responding sooner. I'm not getting the tags and haven't been checking in much lately. My son was dx'd with both Celiac and Crohn's nine years go. Please feel free to ask questions!

Thanks Mehita for checking in, I appreciate your willingness to help. It's been 7 weeks since she was diagnosed and she's doing well still. She's taking Lialda alongside a GF diet and 3 nutrition shakes a day. She's gained 5 pounds too which put her on the very bottom of 'normal' on the BMI chart. It's definitely a bit tricky managing the Crohn's Colitis/Celiac and knowing which is the culprit with such similar symptoms. We go back to the Doctor for the first time since diagnosis in 2 weeks and I am eager to see what the calprotectin test shows. They are not retesting the Celiac, not sure how often that should be done. Did your Doctor ever question the Celiac diagnosis? Our first GI thought it was a false positive from IBD, but the second firmly believed it with her values being so high even though it is a rare combo. I still wonder if she has Crohn's Colitis or UC. She is patchy like Crohn's but seemingly doing well on the Lialda so far at least outwardly.

 

[Mehita]

We run Celiac panels once a year or during times when we weren't sure if it was Crohn's or Celiac causing the issue. My son was vomiting daily for awhile and we kept chalking it up to gluten only to find out he had a stricture. It can be really tricky because you have to rule one or the other out, so my best advice is to be sure you're 100% certified or naturally gluten free, just to take Celiac out of the equation for when she's not feeling well. That being said, be sure to check lip gloss, toothpaste, mouth wash, medications (www.glutenfreedrugs.com) and always, always read labels. I ran across salsa that had wheat in it. Why the heck salsa needs wheat is beyond me *smh*.

Our third GI did initially question the Celiac dx when we first saw him, but he's since done his own scopes and biopsies and now believes it. DS was initially diagnosed with a 72, followed by scopes, and he always vomits almost immediately when accidentally ingesting gluten, so... pretty obvious.

Good luck at the appointment!

 

[crohnsinct]

Sorry I am late to the party. You have been given great advice and insight.

I just wanted to pop on to say that IBD is IBD. Whether it is UC or Crohns really only comes into play if and when there are colonic surgery decisions to make.

I have known people with mild CRohn's confined to their colon who have responded well to 5 ASA's (although not the norm) and I have known very severe UC patients who have needed Remicade, 5 ASA's and Methotrexate.

Bottom line, you are treated the individual not the name of the disease.

Good Luck at your appointment. I hope the FCP came down nicely.

 

[Carolina*]

Sorry I am late to the party. You have been given great advice and insight.

I just wanted to pop on to say that IBD is IBD. Whether it is UC or Crohns really only comes into play if and when there are colonic surgery decisions to make.

I have known people with mild CRohn's confined to their colon who have responded well to 5 ASA's (although not the norm) and I have known very severe UC patients who have needed Remicade, 5 ASA's and Methotrexate.

Bottom line, you are treated the individual not the name of the disease.

Good Luck at your appointment. I hope the FCP came down nicely.

Yes, I’ve read that is when the diagnosis would be necessary but it is good to hear again. My need for the name is for peace of mind that we are treating at the appropriate level. I trust her Doctor but still comforting to read there are Crohn’s cases confined to colon as hers is that do respond to the 5-ASA drugs. I know it is not the norm and that leaves a little paranoia in the back of my head.

 

[Carolina*]

Hi all! Getting nervous about her follow-up appointment tomorrow after being diagnosed at the end of October. Her fecal calprotectin test just loaded on her chart, it was 178 in October and is down to 68. It seems the Lialda is working on her Crohn’s Colitis, I think? She’s had mouth ulcers and the very occasional cramp but no diarrhea. She felt dizzy and had cramps on Friday but we learned she was accidentally glutened so not sure what to attribute that to. How quickly do they want to see the labs normalized to determine a treatment plan is working?

 

[crohnsinct]

Where is her Crohns located? 178 is just outside of normal at most labs BUT our GI feels that with small bowel disease north of 100 and you consider changing something about therapy plan. Either way that kind of drop is great! Seems something is working! Incidentally, I have read that Celiac "could" raise FCP...not a general rule but could. So maybe treating both brought her numbers down nicely.

So sorry about the accidental gluten. It could be so hard. Like Mehita said it could be hidden in the craziest of places. I have a friend who has a daughter who reacts if unused utensils are placed back into the drawer and there was gluten served the night prior.

 

[Maya142]

It sounds like you're definitely going in the right direction!! How long has she been on Lialda? Generally, they want labs to be normal as soon as possible - but each med takes a different amount of time to kick in. So for Imuran, it takes 3 months or so to kick in, so you would want normal labs by the 3 month mark or at least soon after.

If they aren't normal, then you make a change - whether it is upping the dose or adding a different med to it or switching meds altogether.

With Pentasa, which is another 5-ASA, I have heard it is 30 days. I would assume the same is for Lialda.

Poor kiddo, I'm sorry to hear she got glutened! Gluten really is in the weirdest things sometimes - shampoo, lip balm...I bet it's a really tough diagnosis to adjust to and even once you're adjusted, I'm sure there are slip-ups.

 

[Carolina*]

Where is her Crohns located? 178 is just outside of normal at most labs BUT our GI feels that with small bowel disease north of 100 and you consider changing something about therapy plan. Either way that kind of drop is great! Seems something is working! Incidentally, I have read that Celiac "could" raise FCP...not a general rule but could. So maybe treating both brought her numbers down nicely.

So sorry about the accidental gluten. It could be so hard. Like Mehita said it could be hidden in the craziest of places. I have a friend who has a daughter who reacts if unused utensils are placed back into the drawer and there was gluten served the night prior.

Our lab range is 0-120 with 0-50 being normal. Her 178 was end of October so it’s been just shy of 2 months on Lialda. She has patchy disease in her colon only. I was reading today pediatric celiac patients can have higher normal Fecal Calprotectin values. It’s all confusing with both diseases to know what is what.

 

[Carolina*]

It sounds like you're definitely going in the right direction!! How long has she been on Lialda? Generally, they want labs to be normal as soon as possible - but each med takes a different amount of time to kick in. So for Imuran, it takes 3 months or so to kick in, so you would want normal labs by the 3 month mark or at least soon after.

If they aren't normal, then you make a change - whether it is upping the dose or adding a different med to it or switching meds altogether.

With Pentasa, which is another 5-ASA, I have heard it is 30 days. I would assume the same is for Lialda.

Poor kiddo, I'm sorry to hear she got glutened! Gluten really is in the weirdest things sometimes - shampoo, lip balm...I bet it's a really tough diagnosis to adjust to and even once you're adjusted, I'm sure there are slip-ups.

She’s been on Lialda since end of October, I remember them saying we’ll know in 30 days whether we need to make medication changes. We got a 2nd opinion 3 weeks later and switched Doctors so our followup is from that appointment today making it just shy of 2 months on the drug.

 

[Carolina*]

Her Doctor was pleased with the FCP drop from 178 to 68 and we are sticking with the Lialda. I was surprised she hadn’t gained weight but she was in the Nutcracker all last week and off her routine so I think she may have lost a pound or 2. She did grow an inch in the last 7 weeks which surprised me. Luckily she hasn’t had growth issues yet, still holding steady around the 75% in height. It’s just her weight I’d love to see her solidly above the BMI 5% and she teeters just below.

I wanted to update for new people that come to the site. I know it was so overwhelming when I joined to see all the failed treatment plans. I know the Lialda may not work forever, but I’m grateful it is for now. My experience doesn’t seem to be typical so wanted to share our story too in case it helps others that are diagnosed quickly and start off with a “milder” case. The 5-ASA isn’t supposed to work for Crohn’s but it is working for her indeterminate Colitis favoring Crohn’s.