Anyone have a Normal Fecal Calprotectin Level but diagnosed with IBD?

[sidoni83]

I posted my son's story last week:
https://crohnsforum.com/threads/10-yr-old-being-tested-for-crohns.85818/#post-1031095And I got some really helpful and nice responses which has really awesome and encouraging so thank you!!

I have another question though - his FC came back and it was only 40, and his CRP and Sed rate were also within normal limits (my. GI and I were really surprised by this) - however my GI (I am seeing a really awesome doctor at Hopkins) is really encouraging me to move forward with a colonoscopy, endoscopy, and MRE. She scheduled both the scopes for Sept 14. So anyways I am so hesitant to have him put under unless it is really necessary. I have spent the last week reading every piece of information I could find especially regarding normal labs and diagnosis and it seems that it would be SUPER rare for him to have below 50 on the FC test and actually have IBD. He has had symptoms as long as I can remember - severe abdominal pain (sometimes he says he can't breath the pain is so bad - like thorns are inside of him trying to break out), mouth ulcers constantly (he gets them all the time but last year he had hand, foot and mouth and literally had 32 sores in his mouth which I didn't think is humanly possible - his Ped said it was the worse case he has ever seen...I know you get mouth ulcers with that virus but that seemed really extreme - aside from that, before and after that virus he usually averages about 4 a month), strange rashes, loose yellowish stools all the time, constant nausea, gagging while eating because he said he feels sick when he eats, constant irritates eyes, fatigue, and is by far the smallest 10 yr old in his class (he is just under 51 inches and weighs 54-56 lbs).

One other question - when you first started symptoms - were they gradual or fast, and was it like you would have good days and very bad days, or was it consistently bad days without relief until you were treated? I know Crohn's is tricky and everyone is different but just looking for feedback from everyone and anyone!

I know most the people on this forum have been through so many tests and scopes and everything else so I know it doesn't seem like a big deal for him to just get scoped but he already had tons of tests and surgeries when he was little for a laryngeal cleft and has a big fear of all of it.
Thank you so much! Just want my love bug to feel better.

 

[Pilgrim]

This is not exactly the story you are looking for but my son, when he was 9, went through a long period of persistent abdominal pain which caused a ton of anxiety for him. He had some off and on diarrhea and some small accidents as well.

His blood work was all fine. The GI felt it was constipation. His fcal was just over normal...like 60 or 70 range. He was a good height/weight but his growth had stalled which wasn't an alarm bell because he was big.

BUT his sister has Crohn's so GI agreed to scope for that reason only and was confident it would be clear.

The scope wasn't bad but the biopsies showed Crohn's.

I know scopes are tough.....but you need to know for certain so you can move forward in seeking answers and treatment to whatever the issue is. Poor kid...

 

[my little penguin]

Your child is seeing an adult Gi ???
I would highly recommend going to children’s hospital of Philadelphia since that is “close “ to Hopkins and ranked #1 for pediatric Gi disorders

so what you have to remember is there are MANY different kiddie Gi disorders that can cause issues
So while most parents here have “crohns glasses “
Because they live and breathe crohns
You kiddo could have diseases that mimic crohns such as behcets ,immunodeficiency, eosinophilic disorders and and and
It’s a very long list
My point the scopes and imaging will give them more information
He may not have crohns
But all your docs think he has something going on

chop has an immune Dysregulation clinic which specializes in kiddos other specialists can’t figure out
They pull in the best of the best specialists todiscuss your kiddo

fwiw Ds was only supposed to be scopes at 7 to confirm allergic colitis or eosinophilic disorders
Even after the clean scope the Gi told us it was probably just a food intolerance - biopsies came back for crohns
Threw all of us for a loop


https://www.chop.edu/centers-progra...MIhZe2xIXG6wIVAY7ICh3LrAlwEAAYASAAEgIZ2fD_BwE
https://www.chop.edu/centers-programs/immune-dysregulation-program/about

 

[Tesscorm]

When my son began to show symptoms, they came and went... started in December for a couple of weeks, some diarrhea and that was about it. Started noticing some paleness, weight loss and fatigue in February but he's fair skinned, had started new phys.ed. classes which were 2 hrs /day plus playing lots of hockey... sort of explained it all. March, diarrhea back, more severe than in December and also a fever. Then it passed. Came back again... Dr said maybe stomach flu... symptoms would last from a couple days to a couple weeks and then would disappear the same way. He also had mouth ulcers and loss of appetite. His doctor sent him for ultrasound and x-ray where you drink a fluid first (maybe small bowel follow thru??) and nothing showed. In May, his doctor said if it came back again, to take him to Sick Kids hospital emerg rather than wait for a GI referral... we did that and that's when he was finally diagnosed.

They offered a tentative dx based on his symptoms and admitted him to start Flagyl thru IV. They scheduled him for scopes a few days later and the scopes confirmed his dx.

 

[sidoni83]

This is not exactly the story you are looking for but my son, when he was 9, went through a long period of persistent abdominal pain which caused a ton of anxiety for him. He had some off and on diarrhea and some small accidents as well.

His blood work was all fine. The GI felt it was constipation. His fcal was just over normal...like 60 or 70 range. He was a good height/weight but his growth had stalled which wasn't an alarm bell because he was big.

BUT his sister has Crohn's so GI agreed to scope for that reason only and was confident it would be clear.

The scope wasn't bad but the biopsies showed Crohn's.

I know scopes are tough.....but you need to know for certain so you can move forward in seeking answers and treatment to whatever the issue is. Poor kid...

Thank you so much for your reply. This does make me feel more confident with my decision to move forward with the scopes. Your son and daughter have crohn's? My heart goes out to you, and to them. Does it run anywhere else in your family?

It's weird because my 9 year old daughter has constantly been complaining of her stomach hurting, sore throats, and headaches. She had mono this past winter so I thought maybe symptoms lingered for ab it. She would be more on the constipation end of it but she doesn't have the other symptoms like my son does. I will keep this in the back of my mind though if my son does test positive especially. Thank you again so much for your feedback.

 

[sidoni83]

Your child is seeing an adult Gi ???
I would highly recommend going to children’s hospital of Philadelphia since that is “close “ to Hopkins and ranked #1 for pediatric Gi disorders

so what you have to remember is there are MANY different kiddie Gi disorders that can cause issues
So while most parents here have “crohns glasses “
Because they live and breathe crohns
You kiddo could have diseases that mimic crohns such as behcets ,immunodeficiency, eosinophilic disorders and and and
It’s a very long list
My point the scopes and imaging will give them more information
He may not have crohns
But all your docs think he has something going on

chop has an immune Dysregulation clinic which specializes in kiddos other specialists can’t figure out
They pull in the best of the best specialists todiscuss your kiddo

fwiw Ds was only supposed to be scopes at 7 to confirm allergic colitis or eosinophilic disorders
Even after the clean scope the Gi told us it was probably just a food intolerance - biopsies came back for crohns
Threw all of us for a loop


https://www.chop.edu/centers-progra...MIhZe2xIXG6wIVAY7ICh3LrAlwEAAYASAAEgIZ2fD_BwE
https://www.chop.edu/centers-programs/immune-dysregulation-program/about

No, I'm sorry when I reread my post it did sound like it was MY GI doctor. This is a pediatric GI at Hopkins. My pediatrician sent him back to Hopkins because we live in Maryland, and because he had his laryngeal cleft surgery at Hopkins so they have all of his background.

Thank you so much for your feedback. I think because his GI has been zoned in on Crohn's lately that I have been oblivious to the other possibilities. Did your son have the fecal test before he was diagnosed?

 

[my little penguin]

Ds was dx almost 10 years ago when fecal caloprotectin wasn’t really a test yet
he has done fecal cal a handful of times in the past few years only abnormal twice at 234 and 118 (borderline ) all other numbers were low less than 15 even .
But Ds has more than “just crohns “ so he is not a good example

Ds has this (with skin lesions and mouth ulcers when not under control )

https://www.google.com/amp/s/helpfo...6/09/11/mouth-ulcers-and-sweets-syndrome/amp/

 

[Pilgrim]

Thank you so much for your reply. This does make me feel more confident with my decision to move forward with the scopes. Your son and daughter have crohn's? My heart goes out to you, and to them. Does it run anywhere else in your family?

It's weird because my 9 year old daughter has constantly been complaining of her stomach hurting, sore throats, and headaches. She had mono this past winter so I thought maybe symptoms lingered for ab it. She would be more on the constipation end of it but she doesn't have the other symptoms like my son does. I will keep this in the back of my mind though if my son does test positive especially. Thank you again so much for your feedback.

Yes, we have both a son and daughter with Crohn's. My daughter was diagnosed at 3 yrs old (she is almost 10 now) and her older brother was diagnosed at age 9 (now is 12).
We have a large family and these are 2 of 7 siblings. We have had one other tested but not scoped and she was found to be fine.
Strangely no other link to Crohn's on either side and of course it makes me wonder what I did wrong as a mother! But even without a previous family diagnosis there are genetics involved in Very Early Onset cases (like my daughter) as well as Early Onset (like my son). An childhood diagnosis also points to a tougher disease course but there are good treatments available now and our kids have been doing very well.
Believe it or not, there are even families with 3 children diagnosed!
7 years ago when my daughter was diagnosed, the GI said they used to rarely see such young children but it was growing much more common at that point.
Please keep us posted on the scopes. I hope you get answers.

 

[sidoni83]

Yes, we have both a son and daughter with Crohn's. My daughter was diagnosed at 3 yrs old (she is almost 10 now) and her older brother was diagnosed at age 9 (now is 12).
We have a large family and these are 2 of 7 siblings. We have had one other tested but not scoped and she was found to be fine.
Strangely no other link to Crohn's on either side and of course it makes me wonder what I did wrong as a mother! But even without a previous family diagnosis there are genetics involved in Very Early Onset cases (like my daughter) as well as Early Onset (like my son). An childhood diagnosis also points to a tougher disease course but there are good treatments available now and our kids have been doing very well.
Believe it or not, there are even families with 3 children diagnosed!
7 years ago when my daughter was diagnosed, the GI said they used to rarely see such young children but it was growing much more common at that point.
Please keep us posted on the scopes. I hope you get answers.

You are so kind! Thank you so much. I am so happy your kids are doing so well now!
When my little guy had a hole (Laryngeal cleft) in his throat for his first 3 years of life and all doctors kept telling me it was behavioral so we did tons of therapy because he wasn’t eating solids And was getting frequent lung infections...I could’ve kicked myself for not pushing harder sooner (I was definitely pushing but they were pushing harder) and really doubted myself as a mom, so I can sympathize with you but it makes me sad to hear you say what did you do wrong as a mom! We do the absolute best we can, and I know all of our kids will look back and be grateful for the fighting we did do for them!
I have heard of so many cases that are not hereditary so it doesn’t surprise me. My side of the family has always had stomach issues. My mom had bleeding ulcers when she was young and I had a great grandmother pass away from stomach cancer. Also, when I was in college I was always sick to my stomach and couldn’t gain weight (unfortunately I don’t have that problem now! Ha!) and I ended up getting my gall bladd. His does seem different though. We had a long talk last night and he is nervous but he said he is sick of living like this and is ready for the scopes! He just got another mouth ulcer this morning ugh.
One other question - for the scope prep it has us doing the chocolate squares and miralax...astoundingly none of my kids eat chocolate so do you have a suggestion for another option? I emailed his GI but sometimes it’s slow to get a response!
Anyways thank you again so much for your help. I can’t tell you how much better it feels to know I’m not alone! I will definitely update after the scopes! And sorry for the long messages...I think quarantine is getting to me !!

 

[my little penguin]

Exlax is the choc square
Ds has tree nut allergies so he cant “do the choc square “
He takes the pill (ducolax) instead

The Gi will need to but you have to be able to swallow them

your GI can tell you if ducolax is acceptable and what the dosing is for his age and weight

also remember to wait for the biopsies before deciding anything
We were ready to switch all sorts of foods around
Only to find out he had crohns after the biopsy
And wanted to add for “weird “ kids that don’t fit in the box
We have had a “working dx of crohns “
Crohns dx abd back and forth many times over the past 10 years
For now Ds has a crohns dx but the docs are still looking to connect all his dots

 

[sidoni83]

Exlax is the choc square
Ds has tree nut allergies so he cant “do the choc square “
He takes the pill (ducolax) instead

The Gi will need to but you have to be able to swallow them

your GI can tell you if ducolax is acceptable and what the dosing is for his age and weight

also remember to wait for the biopsies before deciding anything
We were ready to switch all sorts of foods around
Only to find out he had crohns after the biopsy
And wanted to add for “weird “ kids that don’t fit in the box
We have had a “working dx of crohns “
Crohns dx abd back and forth many times over the past 10 years
For now Ds has a crohns dx but the docs are still looking to connect all his dots

I will definitely get approval from pediatrician. There was another option they had listed instead of the exlax but it wasn't listed under his weight but im wondering if that is because he doesn't weight the normal size of a 10 yr old so they assume younger kids have issues with swallowing pills. He actually has never swallowed a pill so we will see. Thank you!

Also - my son has really been complaining about his fingers hurting. Yesterday we were at the beach and he was having a hard time even picking up his skim board because he said his knuckles hurt really bad. the other boys he was playing with didn't have the same problem. He did say that when he wakes up his fingers are always really sore. This morning we were picking cucumbers from our garden he jolted back and had tears in his eye and he said his knuckle hurt in his index finger really bad. Now he seems okay but when I asked him about it he said they have been bothering him for awhile sometimes worse than others. I was just curious how your son's arthritis started? Also, would blood work have shown this? Although he had the blood work a while ago and at the time when he had it done I don't remember him complaining about his fingers at that point. Maybe I'm jumping to conclusions but want to make sure I am on top of it. Thank you so much!!

 

[my little penguin]

Ds started with leg pain
Then stiff fingers
We saw a rheumatologist who monitored ds
After 6-8 months declared Ds had arthritis
Particularly juvenile spondyloarthritis associated with inflammatory bowel disease that was independent of crohns Flares .
Now it’s known as ERA
The enthestits are effected as well as his fingers
Nothing shows in Ds bloodwork ever he is considered seronegative

 

[sidoni83]

Wow! This is exactly how my little guy is presenting. He has been complaining about leg pain for several months which I mentioned to his ped and GI and the ped said it was probably growing pains. Now he has had stiff fingers for the past several weeks (since he mentioned it to me anyway). Oh and when I say bloodwork I just mean it didn’t show up on CRP or Sed Rate so I don’t know if they will test him for other things when I take him to a rheumatologist. Thank you so much for the info...it makes me feel like I’m not losing my mind.

 

[sidoni83]

Wow! This is exactly how my little guy is presenting. He has been complaining about leg pain for several months which I mentioned to his ped and GI and the ped said it was probably growing pains. Now he has had stiff fingers for the past several weeks (since he mentioned it to me anyway). Oh and when I say bloodwork I just mean it didn’t show up on CRP or Sed Rate so I don’t know if they will test him for other things when I take him to a rheumatologist. Thank you so much for the info...it makes me feel like I’m not losing my mind.

He actually also got a random rash on his back that started since his fingers started really bothering him...no idea if it is related but attached a picture. He gets a ton of weird things like ulcers on the outside of his nose (I attached a picture of the latest nose ulcer he got a few months ago - I’ve been documenting everything for the past 6 months or so), bumps around his mouth (not fever blisters), tons of random skin rashes, and his eyes are always bothering him...itchy and sensitive. Our GI suggested we see an opthomologist after his scopes so I set up an appt.

 

[Jo-mom]

So sorry that your son is going through all of this. Just want to say that once the right treatment is given, he will be like a new boy, so it is good that you are getting the testing done. Also want to add that if he has enteropathic arthritis and bowel disease, that the treatments are often the same. My son is on remicade and it is treatment both his conditions. He was like a new person after the treatment started to work. So don't lose hope.

 

[my little penguin]

Please see a dermatologist they can help figure out what the lesions are .
Or try to get a second opinion at chop
Veo ibd clinic combines specialists so you see immunology/Rheumo /Gi/Genetics
The dirt team at chop combines a ton of specialties depending on your kiddo
You sit in one room and the docs come into you one after another and discuss as a team
Ds has seen both abd they are very helpful
I can pm you details if you want

 

[sidoni83]

Please see a dermatologist they can help figure out what the lesions are .
Or try to get a second opinion at chop
Veo ibd clinic combines specialists so you see immunology/Rheumo /Gi/Genetics
The dirt team at chop combines a ton of specialties depending on your kiddo
You sit in one room and the docs come into you one after another and discuss as a team
Ds has seen both abd they are very helpful
I can pm you details if you want

Yes! Please! That would be great. We had the scopes already on the 14th at Hopkins so Im gonna do those and depending on what they say I would like to get another opinion. One of my friends works at Chop actually but she is an OT and works with brain injuries there.

Do either of these skin rashes/lesions that I posted look similar to anything your son has had? I could post pictures for days of random symptoms he has had. It's so frustrating.

 

[sidoni83]

So my little guy had his scopes today...he was a trooper and handled his prep like a champ...actually the cramping, accidents, and diarrhea he had with the prep is similar to his every day life so it didn't phase him. They took a bunch of biopsies. She said she didn't see anything crazy with the scopes but the biopsies will paint the full picture. One main thing she noted was when taking the biopsies there was a decent amount of bleeding which could be a sign of inflammation - that was in her words. The actual report says "Friability of mucosa with biopsies". I was kind of surprised there were no ulcers or lesions based on the amount of ulcers and lesions he has been getting in his mouth and on his skin, and based on his stomach pain and diarrhea. He is getting to the point where it takes him 3 to eat a meal because he feels so nauseas the whole time he is eating...on top of all of his other symptoms..I just want answers Is it common for the scopes to appear fairly normal but biopsies show something? Thank you!!

 

[my little penguin]

Most see damage visually on scope
Ds is outside of norm so his intestine looked good
Friable in places but looked good
Biopsies showed chronic and acute inflammation plus granulomas in multiple areas so crohns for him

Spondyloarthritis in adults can cause sub clinical inflammation in the Gi tract
So not crohns but still inflamed Gi

Delayed gastric emptying can cause kids belly pain
And trouble with nausea /eating -Ds has this

and sometimes there are things such as auto inflammatory conditions which are rare but affect skin/mouth /joints /Gi tract etc....
Ds has one of those too

makes for a muddy picture

 

[sidoni83]

So it sounds like it would be rare for his biopsies to come back abnormal if the intestines looked fairly good? Im wondering why it bled so bad when she was looking.

Would the delayed gastric emptying cause the diarrhea and mouth sores and failure to thrive by chance?

This is so frustrating. He is so anxious to have an answer and I hope I am able to give him one...

 

[sidoni83]

She did say the friability was all throughout.

 

[my little penguin]

Mouth sores that I know of
Crohns
Bechets
Sweets syndrome
Many auto inflammatory diseases
Juvenile arthritis

I am sure there are more
Failure to thrive would not be delayed gastric emptying -unless he isn’t eating enough calories
Are you keeping track on an app like my fitness pal?
We did this with Ds and he was consuming a ton but not gaining
He would gain with kids boost shakes prior to dx in addition to food
But sane calories in food no gain

have you tried extra shakes ?

basically if it isn’t crohns there are a lot of rocks to look under

I only know my kiddos

 

[sidoni83]

Yes! He eats SOOOOO much! I have been tracking for awhile. He literally eats 3 times what my other 2 eat and doesn't gain or grow. My daughter is 9 (he is 10) and is almost 5 inches taller and has 20 lbs on him. They are only 16 months apart. When they were younger he was bigger and then they were the same and now continuously she has gotten much bigger than him...and technically she is still pretty small for her age (also the smallest in her class..but she is also the youngest). The only issue is it takes him 2-3 hours to eat because he is nauseas the whole time he is eating but he is trying so hard to gain weight so he eats as much as he can. We have tried shakes but he isn't a fan but we do give him milkshakes with avocados for extra fat.
Do you know what else could cause the bleeding/friable mucosa?
I am so sorry to ask you so many questions but I feel like a lot of his story is similar to your sons and you are a wealth of knowledge so I really appreciate it. I could tell yesterday his doctor is gonna press on and keep looking for answers because she feels something is wrong too, which I appreciate. She also seemed to think that his biopsies may show something so I guess we will see...she said it should take about 7 days.

 

[my little penguin]

What shakes have you tried ?
Gi should be able to give free samples
Kids boost
Pediasure

Through gi
Peptamen jr
Peptide

neocate jr
Elecare jr

the trick is to give them the worst tasting first. Elecare jr /Neocate jr are elemental formula and horrid to the taste most need an ng tube

then the semi elemental peptamen jr abd peptide
Taste much better after that

kids boost /pediasure taste like dessert since they are polymeric formula

even Carnation instant breakfast or slim fast help put on weightper our Gi as long as given in addition. To food


Kate farms is organic
Orgain has a kids version and a milk free version
Owyn has a version

the point is they are easier to absorb than food for extra calories

high fat may be an issue if he has delayed emptying
Again Gi has to run a test for that
Ds has both so ...
He did formula for years took hours to drink the first peptamen jr (8 oz)
He cried /used a straw and pinched his nose
But powered through
I bribed him well
After a week he could chug one in 10 minutes
So it’s about getting through the taste

 

[Pilgrim]

Both my Crohn's kids had at least one visibly good scope (I think we're up to 7 scopes between them) where I've been able to dream of real remission but have then had active Crohn's show in the biopsies. This is with great bloodwork as well. It's not over until the GI brings the pathology report. That may be good or bad news, but there it is.

 

[sidoni83]

We have tried Pediasure, boost, and carnation instant breakfast (as per his pediatrician)...He didn't like them at all, and would hold his nose to try and take them down and gag and eventually vomit ...That is a GREAT idea to start him with the gross tasting ones and work on up - I wish his doc had suggested this!
So far for the scopes - we have only gotten the Disacchardiase results back - the lactase was low at 8.8 - the sucrase, maltase, and Palatinase came back within the normal range. I have cut him from dairy for several weeks at a time several times before to no avail - could this still be what is causing all of his issues? Could this also cause the friable mucosa throughout his digestive track?
Speaking of issues - yet another issue we have come across that I have no idea if it is even related is the soles of his feet are peeling - like huge pieces of skin coming off. He is not a sweaty type of kid and it doesn't look like athlete's foot at all, and it isn't itchy. Im gonna mention it to his doctor...just thought it was weird. Im sure some of these things I notice aren't related but I keep a journal of EVERYTHING just in case (my husband thinks I'm a little nuts but it has come in handy in the past!). Thanks again for any help!

 

[my little penguin]

Have you read labels ?
so if it’s lactose intolerance
That can cause a ton of issues
Simply cutting out milk isn’t enough
And that would explain him not liking pediasure /boost etc they all have lactose
My oldest is lactose intolerant

Any label that contains milk must be avoided
also anything that states may Contain milk or made in the same lines or same facility as milk
If it’s a U in a circle with a D then dairy is on the line
Most baked goods /crackers /cookies etc have milk
Cereal have milk
Orgain vegan is milk free
As are the neocate jr or elecare jr
School safe brand brownies bars are nut /milk free
Some potato chips have milk
Nothing from a commercial bakery is safe

lactose intolerance can cause blunting of the Villaso they don’t absorb as well-slow growth
Diarrhea
Abdominal pain etc....

Abd with my oldest even the Gi didn’t think it was milk after all my kiddo (non ibd ) drank a gallon of milk often

lunch meat is another hidden area of milk
Frozen veggies sometimes
It’s tricky

my ibd kiddo has tree nut and fish life threatening allergies so label reading and calling companies is a must

the May contains and made in the same facility is voluntary so some companies don’t use it

Divies cookies are milk free
Enjoy life chips are milk free as are most of their products

 

[my little penguin]

Most store bought bread ,Hamburger buns etc have milk in them .
It’s crazy once you start looking
https://www.kidswithfoodallergies.org/choosing-safe-foods.aspx

 

[my little penguin]

https://www.kidswithfoodallergies.org/milk-allergy.aspx
One for milk

 

[my little penguin]

Peeling skin on feet can be common in teen and pre teen boys per our dermo
Happened to Ds A lot
No one is concerned but let your doc know

 

[sidoni83]

Thank you so much for the info as always!
I was really strict with reading labels because he was really sick at the time and I was a nervous wreck. I am very OCD so I when I do something, I do it insanely but I am also human so of course always a chance of missing something. It's worth another try! I will say when he isn't cutting dairy he is a milk connoisseur...literally that is usually all he drinks. It is his favorite thing on Earth so this will be a sad thing to relay to him. Would it cause the constant mouth sores, and skin and eye irritation? I want to figure this out and will try anything but my gut is telling me it is more than lactase intolerance...of course I could totally be wrong.

 

[my little penguin]

Right now you have very muddy waters
So once you eliminate lactose -all lactose if your Gi states lactose intolerant
Then a few weeks (6-8) you can see what still is there and have a clearer picture
It’s probably not causing everything
But what symptoms are left may not be gut related abd easier to fix once you weed out the lactose intolerant stuff

 

[my little penguin]

And crohns kids can be lactose intolerant as well
So still wait for biopsies

 

[sidoni83]

Hi Little Penguin...we haven’t received any more test results yet (it has not even been 5 days - she said 7-10) but I’ve been doing a lot of research based on a lot of stuff I’m reading on here...and another question for you - would they see anything on his endoscopy that would indicate Gastroparesis? I know you said they do the stomach emptying test but just wandering if the biopsies would show anything that would indicate further testing for this?
The last endoscopy he had was when he was 3 or 4 and the main abnormalities they found were nodular mucosa in the antrum and biopsies showed squamous mucosa with mild reactive epithelial changes up to 9 eosinophils per HPF...from what I’ve read it would need to be over 15 for concerns of EOE...I’m really curious to see what his biopsies will show this time.
Also, I can’t remember if you answered this or not - is friable mucosa throughout normal?
Thank you again for all of your help. I can’t tell you how much I appreciate you!

 

[sidoni83]

Okay so right after I wrote that last message I got his test results...please help me decipher..

 

[my little penguin]

Nothing in the lower Gi tract just esophagus abd stomach
Not sure what that means interns of what they found
You will need to wait for Gi ......
no changes similar to my kiddo sorry

EoE is a different beast not sure how many eosinophils are required for EoE dx

Delayed gastric emptying would not show on biopsies
It’s just the amount of time it takes for a specific food meal (typically scrambled eggs /toast ) to move from the Stomach to small intestine
Average is 4 hours and less than 10% should be in the stomach at that point .

 

[Maya142]

I am also human so of course always a chance of missing something. It's worth another try! I will say when he isn't cutting dairy he is a milk connoisseur...literally that is usually all he drinks. It is his favorite thing on Earth so this will be a sad thing to relay to him. Would it cause the constant mouth sores, and skin and eye irritation? I want to figure this out and will try anything but my gut is telling me it is more than lactase intolerance...of course I could totally be wrong.

My daughter has IBD and is lactose-intolerant but is still able to eat some dairy products. We use lactose free milk and yoghurt. Hard cheeses have less lactose than soft cheeses. She takes Lactaid (which is OTC) when she is eating something with lactose - it was recommended by her GI. That said, it's not like Lactaid is magic and allows her to eat as much dairy as she wants. She tries to avoid things with lactose- especially things with a lot of fat because that seems to cause severe nausea and diarrhea. So it's not like she is eating a big slice of greasy pizza in her college dining hall, but she can tolerate home-made pizza because she can choose how much cheese to put on it. Generally, she can have small amounts of cheese (low fat), a small amount of lactose free milk in coffee or tea and I adapt recipes for her, when I'm cooking, to reduce cream or milk or whatever.

Sometimes she will decide that having some food containing dairy is worth it and then she'll eat ice cream and really regrets it several hours later! (Sorbet is a better option for her, but every so often she wants ice cream).

My daughter's GI told us that having inflammation in your gut can make your lactase low. She said some patients with IBD are not truly lactose-intolerant and once the inflammation is under control, they produce enough lactase. However, others are truly lactose-intolerant and even once the disease is in remission, they can't tolerate lactose. My daughter was hoping her lactose intolerance would go away but it never did.

Also wanted to add - we had no skin or eye symptoms with lactose intolerance, just nausea, bloating, and diarrhea

 

[Maya142]

I’ve been doing a lot of research based on a lot of stuff I’m reading on here...and another question for you - would they see anything on his endoscopy that would indicate Gastroparesis?

My kiddo has Gastroparesis in addition to her other illnesses. You need a gastric emptying test to determine whether his stomach is emptying properly. It's a test done over 4 hours. Common symptoms are nausea or vomiting after meals, feeling full after only a few bites, weight loss, reflux etc. Does any of that sound familiar?

 

[sidoni83]

My kiddo has Gastroparesis in addition to her other illnesses. You need a gastric emptying test to determine whether his stomach is emptying properly. It's a test done over 4 hours. Common symptoms are nausea or vomiting after meals, feeling full after only a few bites, weight loss, reflux etc. Does any of that sound familiar?

Thank you so much for your reply, Maya! Nausea and feeling full are definitely familiar for him...it literally takes him 2 hours to finish one meal..at first we thought it was because he was distracted but he starts to feel really nauseas every time he eats but then he is hungry later...we try to give him small meals every few hours...even stuff he loves it takes him forever to eat. We haven't had an issue with reflux that I am aware of..he never complains of burning or pain in his chest..when he was little he had a ph tube put in for 24 hours to test for reflux and she didn't see any...
His is more gas and cramps (very severe pain - like keel over saying its hard to breath the pain is so bad often) and it is usually lower. He also has loose stools every time he goes to the bathroom...also accidents are pretty frequent with him. Failure to thrive and mouth sores. He gets really bizarre skin rashes and irritations..and his eyes are constantly bothering him.
I posted the recent biopsies we just got back today - did you happen to see them above? I am curious if you are able to decipher anything from these results? The doctor wants him to get an MRE and capsule endoscopy next. My poor buddy just wants to feel better....he said he has gotten so used to the pain that he doesn't know what it will be like to feel different ...but all of these tests are giving him a lot of anxiety...when he was little he had a laryngeal cleft and had surgery and tons of doctors appointments also at Hopkins and I think this has caused him to really fear every little test. I don't want to put him through unnecessary tests...his GI is adamant about all of them though so we definitely will get them. I was hoping we would find whatever this is and get him feeling better asap but I'm learning that is not going to be the case...Thank you again for any insight!!