Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » 10yo diagnosed with IBD/Celiac?


 
10-22-2017, 01:41 PM   #1
Carolina*
 
Join Date: Oct 2017
Location: North Carolina
10yo diagnosed with IBD/Celiac?

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!
10-22-2017, 02:49 PM   #2
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
__________________
DS - -Crohn's -Stelara -mtx-IVIG
10-22-2017, 03:12 PM   #3
Carolina*
 
Join Date: Oct 2017
Location: North 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.
10-22-2017, 03:32 PM   #4
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
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 !
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-22-2017, 03:36 PM   #5
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
10-22-2017, 03:44 PM   #6
Carolina*
 
Join Date: Oct 2017
Location: North Carolina
She is drinking 4 of the boost breeze juice boxes, she did not like the boost/ensure/pediasure shakes. She feel good and doesnít seem sick though we obviously know she is. She wants to eat large amount of food in addition to the juices. Sheís always had a big appetite that shocked people. Just hope she isnít eating too much solid food.
10-22-2017, 03:46 PM   #7
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
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.
10-22-2017, 03:48 PM   #8
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
10-22-2017, 03:52 PM   #9
Carolina*
 
Join Date: Oct 2017
Location: North 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 wasnít harming her intestines more by not allowing them to rest if that even makes any sense.
10-22-2017, 03:56 PM   #10
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
10-22-2017, 04:26 PM   #11
Carolina*
 
Join Date: Oct 2017
Location: North 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!
10-22-2017, 04:29 PM   #12
my little penguin
Forum Monitor
 
Join Date: Apr 2012

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

Een
https://www.naspghan.org/files/docum....29%5B1%5D.pdf
10-22-2017, 04:36 PM   #13
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
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.
10-22-2017, 04:48 PM   #14
Carolina*
 
Join Date: Oct 2017
Location: North 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.
10-22-2017, 05:00 PM   #15
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
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.
10-22-2017, 05:08 PM   #16
Carolina*
 
Join Date: Oct 2017
Location: North 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.
10-23-2017, 10:14 AM   #17
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
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.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-23-2017, 10:27 AM   #18
Carolina*
 
Join Date: Oct 2017
Location: North 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.
10-23-2017, 10:34 AM   #19
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
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.
10-23-2017, 10:42 AM   #20
Carolina*
 
Join Date: Oct 2017
Location: North 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.
10-24-2017, 08:39 AM   #21
Carolina*
 
Join Date: Oct 2017
Location: North 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.
10-24-2017, 11:21 AM   #22
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
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!
10-24-2017, 11:28 AM   #23
Carolina*
 
Join Date: Oct 2017
Location: North 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?
10-24-2017, 11:52 AM   #24
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
10-24-2017, 03:51 PM   #25
Carolina*
 
Join Date: Oct 2017
Location: North 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!

Last edited by Carolina*; 10-24-2017 at 06:21 PM.
10-25-2017, 12:17 PM   #26
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
∑ NG Tube
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!
10-25-2017, 12:20 PM   #27
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
Good luck with MRE today, hoping for solid answers for you all.
10-26-2017, 10:42 AM   #28
Carolina*
 
Join Date: Oct 2017
Location: North 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 itís a false positive with values that high. So for now we are doing nutrition shakes alongside a gluten-free diet (I know this isnít EEN) and Lialda. Testing again in December. Sheís officially on the Ďnormalí, 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 wonít allow them to call it UC with certainty.

Last edited by Carolina*; 10-26-2017 at 11:43 AM.
10-26-2017, 05:32 PM   #29
Carolina*
 
Join Date: Oct 2017
Location: North 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 doesnít work that way. I hope your daughter continues to do well!
10-26-2017, 07:44 PM   #30
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
Glad you have a plan!! Good luck and keep us updated!
Reply

Crohn's Disease Forum » Parents of Kids with IBD » 10yo diagnosed with IBD/Celiac?
Thread Tools


All times are GMT -5. The time now is 06:07 AM.
Copyright 2006-2017 Crohnsforum.com