• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Blood in his stool this morn

History I'd my son's issues
A month old bloody diapers-er visit and told can't digest milk
age 2-3- sewage like watery diarrhea (no formed stools at all)
age 5- gained 1 lb in an entire yr
age 6- random often bouts if diarrhea and random episodes of vometting

He's had Bloodwork done and it has come back fine.

My son is 8 yrs old. This morning he went to the bathroom around 3am and I heard him start crying. He had diarrhea and complained his back and stomach hurt. Later on he went to the bathroom again and forgot to flysh. I noticed there was some blood and mucous in his stool and stool was mushy- blood was a couple of spots and bright red.

Now I was diagnosed with IBD in 2010 after a long yr of intense bloody diarrhea but in high school I had trouble gaining weight and had mucousy stools often. With my history I'm prone to jump to conclusions so I'd just like some insight...lol
Also 2 or 3 months ago I had c-diff but he's not running a fever and is acting "normal" and only complains of pain when he's in the bathroom Passing diarrhea/stools.
I'm so sorry to hear this but I think you know what I'm going to say.:hug:
He needs to see his general doctor ASAP!
C. Diff can be present without a fever.
If it is c diff catching early will hopefully help fight it off faster.
Also ask for labs. Sed rate, crp, cbc .....
Given your history and even his when he was younger, the doc needs to take it seriously.
My girl started having issues since 3 months old.
I hope it's an easy fix. Hugs
I agree with Farmwife. He needs to be checked out Asap. Given the family history scopes might be warranted if stool tests don't show C-Diff.
I called his pediatrician and let them know. He's going to see her tomorrow. I feel like every yr or every 2 years he has a "hiccup" and exhibits symptoms but every time he gets checked it's nothing and I look like a helicopter parent or something. My husband reminded me though that it's not the first time he's woken up with back aches/stomach aches in the middle of the night and diarrhea.

If anything I'd like to get a stool sample done since that hasn't been done...maybe that'll provide more info than bloodwork.


Well-known member
I agree on the testing. I would add fecal calprotectin to the list even though if he has cdiff that could be the cause of elevated results but if cdiff comes back negative and fc is still elevated it may move you to scopes faster.

Good luck! I hope it is an easy fix!


Well-known member
Don't worry about what you look like. My first daughter went undiagnosed for two years because I was a crazy sports parent only concerned with swim times. My second daughter went undiagnosed for three years because I was a paranoid crohn's parent who thought just because she had one daughter with the disease her other daughter had it.

Blood in the stool is not normal kid stuff. May not be crohn's but still needs to be investigated
Well he's gone to the bathroom this morning and there wasn't any blood but it also wasn't a healthy stool. as he called it, it was crumbled. I want to say probably more mucous but I can't be sure. he also had an episode last night which he felt like he needed to go but he didn't really have to. he sees his dr at 2 today and I see my GI in a little bit as well(so maybe I could ask a few questions to my GI). *sigh*
My asymptomatic son doesn't have anything register in bloodwork but has had slightly elevated fecal calprotectin which when investigated farther showed inflammation throughout small intestine.
Feeling a need to go but not having to could signal inflammation (at least it did in my son). Is he waking up in the night either going or feeling like he has to? Waking up in the to defecate is a red flag in my son's GI's book.
Sounds like definitely more investigation needed but yes at least confirm/rule out c-diff. (no fever with c-diff for my son and no blood until about the 3rd day)
Well his pedi ordered stool samples(occult blood, fecal calproctine, c-diff) and blood work(sedation rate and some others). He seems perfectly fine now so I have a feeling nothing will show but it's still good to get him tested in case he is starting to show...get it nipped in the bud so he won't have to deal with the issues I've dealt with. we will see I guess
How long does it usually take for the results to come back? I collected his samples fri morn (some diarrhea some formed no blood) and he got his blood drawn around 2pm friday. I don't think it was a rush order...just wanted to have an idea when to expect a call or results...

my little penguin

Staff member
Fecal cal about a week
Sed rate etc an hour they know the results
Other stool tests about a day or two

Some Gi wait until they have all the results
If you have a patient portal they should show up in there quicker
Well this morn he woke me up and told me he had blood again in his stool. I took a look and sure enough there were a few dime sized spots. He had salad with his dinner last night and it appeared he had trouble digesting it. Poor kiddo :/ I hope the test results come back soon and I hope there's some more answers (and not that everything is normal cause I'm starting to realize everything isn't normal).


Well-known member
Oh man! That stinks and I despise waiting for that FC test to come back. A Friday turn in can result in the doc getting results the next Friday or even the Monday after that!

Try to hang in there...answers are coming!
I sent his pedi an email this morn abouts the blood and I got a call just now. They are going ahead and referring him to a gastrointestinal doctor even though the results haven't come back yet. With his symptoms and history and my history its seems better to go ahead and refer him out.


Well-known member
I am sure I speak for the committee....Agreed and approved! Good ped!

The good thing is you won't be delayed with GI because you will already have blood and stool tests done!
So I want to make sure I cover everything at the referral, what are some things (even if they don't seem like they'd be symptoms) should I make sure to say.

He's always been a sweater when he sleeps and he seems to always itch-sometimes there's small red bumps but not always, he wears glasses but he's never complained of eye pain, there are times he gets a migraine and will lay down and sleep until the next morning...is there anything else which would be a red flag symptom that isn't necessarily digestive related (obviously I'd tell them about the blood and his digestive symptoms)...


Well-known member
How has his growth and weight gain been? Has he fallen off his curve? This is a big one with kids.

Also if he has had any joint pain you will want to mention that.

I know you are familiar with digestive issues but constipation, lack of appetite, getting full fast, feeling like lump in throat, random vomiting for no apparent reason and constipation are also pretty popular in the pediatric population.

Mouth ulcers are another one.

Good luck! You're on it!
He has an appointment with a GI next tues. Still no news on his labs and he's been normal since so idk. Knowing him he's done showing symptoms until next yr. Well see what the GI wants to do...hoping the labs will come back today.
When my daughter was younger her symptoms would come and go too. It made diagnosis very difficult. Keep a symptom log, take pictures, and be persistent!
Labs came back normal...is it OK if I'm frustrated about that. Don't get me wrong I'm happy he's fine but I'm frustrated there's not more answers to why he's had blood. It's making me second guess myself.


Well-known member
FC normal also? There are some kids on here who return normal blood labs but disease was still found during scopes. It is not the norm but it does happen. T is one of them.

It is much less common to return a normal FC and still have active inflammation. It was the FC test that finally alerted us to T possibly having IBD.

Do NOT second guess yourself. Normal labs are only one part of the puzzle but diarrhea is diarrhea! Blood is blood! Pain is pain! Nausea is nausea!

Keep the GI appointment and see what they say. In everything I read, if FC is normal they aren't likely to scope but I would still ask them to find a reason for his symptoms. IBD is just one of many things that can be going on.

:hug: undiagnosed land is not fun!
I'm not sure what the FC was. The nurse I spoke with said I was already aware the labs were normal but I don't have any numbers or anything to really know what I'm dealing eith. I plan to ask at his appointment about the FC result. I know IBD can be difficult to diagnose as symptoms tend to come and go. I just can't shake the gut feeling something is up...that being said it may be my history that has me feeling like this and I need to realize that kids get stomach aches and bugs.

Still I plan to keep the GI appointment and at least discuss with him everything that's been going on. It can't hurt. I also plan to start keeping a log for him...
I emailed the pedi office requesting a copy of his labs. I sort of expected them to be posted in the portal like mine are (well the drs who have the portal) but I guess they dont.. or didn't for some reason? I also picked up a notebook to track his symptoms.

I was scrolling through his visit summaries and noticed his weight percentiles. In dec 2014 he was in the 23 percentile, then dec 2015 he dropped to the 14 percentile, then his recent visit two thurs ago he leapt to the 19 percentile so I don't know if it's anything to serious (though it was a pretty big drop but he has gained some back in the past few months). He's always been tall and lanky and his dad and I are pretty skinny ourselves. I'll have to go back and look at the BMI and height percentiles...

Does anyone know if lactose intolerance could be the cause of these issues? I was told when he was younger he couldn't digest the milk proteins and when he was having the sewage diarrhea (when he was 2-3 yrs old) when we stopped giving him milk it seemed to help. it doesn't seem to be the cause of his later symptoms (from about 5 yrs old on) but it may be? I know for a fact though he didn't have dairy the night before the bloody stools happened.
His pedi just called and the last result came in, the fecal calproctine...it's elevated at 136. His sedation rate was 8 and occult blood was negative. The occult blood I figured since the day I collected the sample there wasn't any blood. She said there was a blood result which was slightly elevated but it's not of concern since it was just very slight.
Occult means hidden-if there is any bleeding not visible to the naked eye it will be positive. I hardly look at sed rate anymore as it takes a while to react-crp or fecal cal are more reliable indicators. What is your next step?
He has an appointment with a GI tomorrow morning but his pedi said with the elevated result and the history she's guessing the GI will order a colonoscopy and maybe an endoscopy. She also said the sedation rate could have been normal due to when he was tested.
Sedimentation. :) sedation is anesthesia. When he was tested as in time of day? Agree that scopes are a good next step...good luck!
Lol autocorrect FTW
his stool samples were collected around 10 am and his bloods were taken around 2pm both the same day.
Our GI would not be impressed with a Fecal Cal of 136. Hopefully scopes will give you a better picture of what is going on.
I meant I've never heard that time has any effect on sed rate. It can be elevated due to infection, inflammation, and a number of other things, but is slow to react (ie if dd was sick with a cold last month her sed rate may still be elevated this month). :)


Well-known member
Hmm at 8 with most labs normal is under 166 so the FC reading would not necessarily be elevated BUT if the GI is happy with that result and doesn't feel the need to move to scopes I would at a minimum be asking for a repeat FC tests as there is some degree of variability with those results and 136 is close enough to the upper limit.

Do you know what your labs upper limit of normal is?
Well the GI ordered scopes but based on family history and slightly elevated fecal calproctine result (he did say that it's not super elevated and if it weren't for the family history he'd sort of write it off). I went ahead and scheduled the scopes but am thinking I may cancel them. He's not in pain aside from a stomach ache every so often and he's back to passing normal stools. I'm not sure if I should proceed or wait until there's something more concrete.
I'd go ahead with the scopes. They may not find acute inflammation but chronic changes may possibly be detected. If nothing is found then you continue to document and hope for the best.
My only concern would be that he said if he finds nothing he won't scope again unless his symptoms drastically change (which I understand I wouldn't want him to scope unless it's needed) I just don't want it to shut down future investigation.

My other thought was if I cancel the scope I'd ask for another fecal calproctine test in a few months and see if it changes.

my little penguin

Staff member
DS only had abdominal pain and constipation no history of Ibd
We waited almost a year to scope due to this
Rectal prolapse finally ended up bleeding
But chronic inflammation and granulomas were found through out .

You can have tons of symptoms and a ckean scope and vice versus
You just don't know
Occasional stomach pain and no diarrhea here, MRE showed inflammation throughout small intestine. I would scope as well. Fecal calprotectin for us was only slightly elevated as well.
I think I'd still do scopes. You can get biopsies done and that will help as well. My son's only symptom was vomiting and kids vomit all the time, right? It wasn't normal kid vomiting after all. It was Crohn's. You just never know with this disease, esp in pediatrics.

While I'm glad your son is feeling better, and I'd be hesitant to keep the appt too, don't let these good days fool you. That sounds harsh and I'm sorry, but if there is something going on and he gets really sick, I'd hate for you to regret not following up. Worst case, you get a base line of his GI health (considering your family history) that may be useful in the future.

Best of luck to you. I hope he continues to feel well!
thank you all for your replies. I still go back and forth I guess mainly because the GI seemed unimpressed by his symptoms and kept saying the blood was related to constipation (which I don't think he's really suffered from since the episodes of random vometting about a yr ago). He said he really is leaning toward an ibs diagnosis, he was about ready to diagnose ibs at the appointment when I brought up his fecal calproctine result.

if the scopes are clear that's a good thing and maybe the meds for ibs will help him, at least maybe they'll stop the frequency of needing to change his undies due to sharting and having to be sent home from school due to diarrhea.
Our GI first considered constipation as the cause of A's bloody stools. I'm sure it is the most common cause in kids. It took us many tests and quite some time to realize that she really did have inflammation and ulcers, not constipation. I think A does have some IBS tendencies, probably most of us do, but unfortunately the IBS meds did not help her. Might be worth trying for your boy though. There's several to choose from and many kids find relief there.


Holding It Together
Your son definitely needs scopes no matter what his labs say. Don't let them put him off. It isn't going to magically get better if he's been having symptoms since almost birth. He needs a definitive diagnosis.


Well-known member
IBS should only be diagnosed after excluding all other potential causes! Not saying your son definitely has IBD but there are plenty of other gastro things this could be and it needs to be fully researched before slapping an IBS dx on it!

T had symptoms for three years and we were blown off with IBS or chronic constipation even with a sister with Crohn's. Finally she stopped growing and since that is an IBD indicator someone ran an FC test and she her results were 1134. Even then GI wanted to retest in two weeks and even after that one said it was my choice to scope or wait another 2 months.

I'll get off my soapbox now.
When your kiddos have stomach aches can they point to specific areas which hurt or do they have generalized "my tummy hurts" kind of thing?
Well he woke me up this morning saying he had a stomach ache when I asked him about it he drew a line from right to left and said it felt like "a bleeding cut." I figure he's hungry and sent him to school since he's not acting like he's in pain or anything. (He also had a stomach and headache on Monday)

When he has his painful BM he always points to his left side and says the pain starts in his back and moves to his stomach.

From my own expirience I have left side pain. When it hits I have to be in the bathroom or else. On my worse days though I do have a general I feel sick, my stomach just is queasy kind of feeling. I don't typically walk around in pain though. I will say...I don't know what a healthy stool looks like or what normal bm pain is supposed to feel like...so this all could be completly normal (though I don't think you're supposed to be in so much pain you cry).

He felt better around lunch time, after he ate and after he went to the bathroom.
Last edited:

my little penguin

Staff member
Same here
Generalized belly stuff ,constipation and eventually weight loss ( slow )
But remember kids present differently than adults
Also I know for other issues in the beginning DH would say well his asthma/allergies do xyz so that should be ok for DS or something similar .
We found out quickly just because the adult has a similar ( same ) issue doesn't really equate to the same thing either how it presents or how it's even treated .
i would scope. I regret that I didn't push for scopes sooner. My husband was on the fence about them and my gut said do it. My son had very extensive disease with tiny amounts of blood. I will always wonder if he could have been controlled with more mild drugs if we had scoped a year sooner. the scopes are very low risk. Much lower risk than untreated disease. I don't say that to scare you but I want others to learn from the mistakes we made. I can tell you about 30 parents who wish they scoped sooner and I don't know one who regrests
doing it.
We've decided to go ahead with the colonoscopy. He was scared at first but now he's more upset that the day before hell only have clear liquids, my husband said he'll eat the same things though so he feels better.

His sinuses are acting up again and his ears are bothering him. He's been trying to clear them by sucking in air really fast and hard bUT it's not helping. he's tried Flonase but that hasn't helped either. well see.
he went 3 times today, said it hurt before and a little while after...after school it seemed weird to me that he did a somewhat hurried walk to the bathroom. He's also got a slight cold. He's had ringing in his ears or a lot of "negative pressure" in his ears (so it sounds like he's under water) for about 3 yrs...it gets worse every now and then
Last edited:


The pressure in the ears sounds like sinuses. I had blocked ear for 8 months, went daily treatment nasal spray (type of steroid) clear up after a month.
The pressure in the ears sounds like sinuses. I had blocked ear for 8 months, went daily treatment nasal spray (type of steroid) clear up after a month.
I figure the sinuses and his ears were/are connected. They said it was due to allergies and prescribed Flonase but it didn't seem to help (he did it every night for a good year, year and a half and he still has the pressure and sinus issues)


I had pain under eye and blocked ear. The GP didn't think to was sinuses but the eye specialist said it was classic. Confirmed by CT Scan.
Scopes are done, should receive biopsy results on fri or mon. Everything looked pretty clear and healthy, there was an area which was red around the exit of his stomach (where the small intestine and stomach meet) he said that it could be a bacteria there and took a biopsy. Biopsies throughout but he's pretty confident no ibd.
Glad things looked okay visually. Be sure to get a copy of the pathology report to verify that what the doctor says is true. (Can you tell I have a serious distrust for doctors? lol) It is also important to keep for your records.
I will be sure to ask for a pathology report! after the mess with his labwork I really want to be sure I keep a record of his labs and procedures


Well-known member
Wow! That was fast! We have to wait months for non urgent scopes!

This is super encouraging! At least if the biopsies show anything it is mild for now. Fingers crossed biopsies are as clear and the scopes!
I was also impressed with how quickly they scheduled his scopes, in fact the receptionists were trying to schedule them even earlier but I told them it wasn't a big deal. If I'm lucky I can get a scope within a month but it's usually a cancellation.

I saw his pedi today, not for him but for his sis. She asked about his appointment and the scopes. She seems really unimpressed by the GI saying it's IBS. She asked about the blood and I told her he was saying it was due to constipation (I'm not so sure but it hasn't happened since and it wasn't a lot to begin with) she asked if he found and tears to really draw that conclusion and I said no, she just gave me a confused look. I told her that he's feeling better and so I'm not gunna push it further. the biopsies may show something but if they don't I'll monitor him and if he passes a lot of blood or he stops growing ect then I'll revisit.

my little penguin

Staff member
Hope you get results soon.
DS had an almost normal looking scope
So much so go sat with us afterwards and wanted to trial IBS drugs and look into foid intolerance . One week later biopsied revealed acute and chronic changes plus granulomas from stomach to anus and he was dx with crohns.

Gi never says all is ok anymore even if things look visually good until the biopsys are in.
It was funny had my other kiddo scoped due issues/family history
Even though everything looked ok gi insisted on waiting for biopsy before saying it actually was ok given DS presentation and history .


Well-known member
I guess there is also a chance it could be small bowel disease and the GI just didn't see it and an MRE might pick it up but with no symptoms, normal blood tests, normal fc, normal scopes, you would be hard pressed to get a GI to agree to it.
I realized I may have worded my first paragraph wrong I meant I'm lucky to get my own scopes scheduled within a month when they aRE ordered. As for my son I'm not worried about him. I won't pursue further testing, I'll just monitor him and see how things progress.
I've been back and forth on writing this because it's basically a shut book at this point. I'm still waiting for biopsy results for him and I'm waiting on MRI results for me...just a lot of waiting going on.

Anyway his stool culture was posted on his mychart as "normal flora greatly reduced" I'm not sure how it happened but that's probably why he had diarrhea and maybe why there was some blood, especially after I had my run in with c-diff.

I think I'll always worry about him and it relates back to when he was an infant and when he had all those issues till he was about 3 yrs old. Maybe though I can look at things at face value instead of thinking the worst case scenario.
Ok...so some of his biopsies are back, a few are pending stains (I guess the ones that are most concerning). The results were posted on his mychart. there is some inflammation shown in his stomach and duodenum and some in his colon as well. the (I guess) diagnosis is possible allergy and it also noted where it could possibly be early IBD (basically don't rule it out but look at other possibilities first). Close followup is recommended.
Now that I'm awake and have read his pathology report, the thing that sticks out as most ibd like is his stomach biopsy-mild chronic inflammation. The other biopsies I have no idea...here is what the findings say

"Findings non-specific, the presence of esophilia in esophageal and some colonic biopsies raises the possibility of allergy, parasities, med effect ect. while definitive changes of ibd not seen, some features noted may be seen in early ibd therefor if all other possibilities are ruled out a follow up is suggested."

My husband says he feels it's ibs and I have a feeling I'll get a call and the GI will say ibs. I'm considering taking him back to an allergist but I'm not quite sure where to go from here. Should I wait it out or what...

Oh my mri results came back as well. No small bowel, stomach or esophagus involvment but my rectum may have the disease in it so if I proceed with surgery I may have to remove my rectum (so I couldnt have a resection...not necessarily a bad thing) oh and BTW they found 2 nodules in my right lung. (In case anyone was wondering whats up with me lol)
The chronic inflammation would concern me, even though it was noted as being mild. I'm not sure that is enough to declare IBD, but it would seem that it is enough to declare that it is not just IBS.

my little penguin

Staff member
Make sure they did an eosinphils count ....
Allergy /eosinophilic gastrointestinal disorders
EoE ege EC can cause similar symptoms

Check out apfed website
There were some mention of the eosinophilia counts

His esophageal biopsy had an count of 31/hpf it mentions this is the area of highest count, his descending colon has another count >65/hpf, focally. (I'm not sure what that means, maybe a very slight allergy?)

There's a lot of mention about reactive changes, patchy increases in lymphoplasma cells. His colon (transverse and descending) says patchy variable gland, acheteccural disarray, mucosal eosinophilia prom lymphoid nodules reactive changes.

His terminal ileum and ascending colon are fine
Cincinnati has a world renown egid's center. Perhaps a second opinion there would be best.
Here's the issues to remember, this is what we've been through with Grace.
Eosinphils can be raised due to inflammation alone.
Grace had raised eos along with microscopic chronic changes. So her first dx's were Egids with ibd " microscopic" as secondary. No one could tell us for sure what was what.
Now Grace never had eos elevated in the esophagus . The esophagus is suppose not to have any or at least under 15 eos.
I hope you get some answers.
If it is earl onset of ibd you need to make sure it's still treated, as you very well know that children tend to have an aggressive course.
Another day and still no call from the GI :/ I got an email from him on Tues saying he was meeting the pathologist and would call and discuss after. maybe tomorrow but the papers I got said to call after 2 weeks if I hadn't heard from them so I was going to call anyway.

I changed my profile pic to a piece of art he did. A torn paper collage with paperweave backround. It's a dr who piece of art. He's done batman, superman, and awareness ribbons and his art has won awards at the state fairs. :)
well he woke us up freaking out. After we calmed him down we got out that he threw up in bed and now his mouth "is spicy." No fever that we can tell but that may develop overnight. We all went on a field trip to the zoo so maybe hes a little dehydrated or sun sick? *sigh*
Ok...so I'm entering new territory. He's been doagnosed with eosinophilia esophagitis (eoe). They found higher eosinophils in his esophagus and his duodenum. he's been referred to a doc who is doing a trial on eoe or who is more specialized in that area.

Mild chronic inflammation in his stomach-he sees that a lot...it's almost normal

Architectural disarray in his colon is a little concerning and is found in IBD though he said he doesn't believe it defiantly is IBD so it's a wait and see how he does.
Farmwife and my little penguin do you think you could help me understand EoE a little better? From what I understand it's an inflammatory response to an allergen either environmental or food. It's a chronic condition but if you can id the allergens and I'll imitate those then he wouldn't necessarily need the steroid treatment (?) is it normal for eos cells to skip areas of the digestive track? His stomach, terminal ileum and ascending colon were clear of them..he had the highest amount in his esophagus and the second highest in his transverse and descending colon. (I'm so confused)

EoE seems to only explain half his symptoms...everything else is still sort of a mystery...I'll leave it a mystery for now but it can be difficult to not look at his issues further.

my little penguin

Staff member
EOS are normally found in the lower gi tract .
They can be found in increased numbers in the lower gi tract when they are caused by a secondary condition such as crohns or a primary condition such as an egids. EOS are not normally found in the eosphagus above 15 ( that tends to be the cut off.
Food triggers for EoE can be anything.
Most allergist will test the child with three types of tests
RAST and skin prick look for IgE mediated allergies that the kiddo might test positive to since EoE is a mixed IgE mediated disease . They might also use a patch test where patches of food are placed on their back for up to 72 hours .
These sometimes give clues to the trigger foods.
Normally you try a top 6 free diet ( even though it's actually the top 8 allrrgens -don't get me started on that ).
You avoid milk eggs wheat soy fish (shellfish as well) and all nuts ( treenuts and peanuts ). Some docs also avoid beef.
After avoiding for three months you rescope to see if the EOS numbers went down .
If not you can chose to all elemental meaning all formula and rescope or inhaled steriod slurry ( buesonide).
If those scope are clean then you start over.
If it was EEN that gave you clean numbers then you slowly add one food at a time say pork for three weeks and then watch for signs or do two food maybe potatoes after a bit 2-3 months another scope to see if the foods were safe or if he showed signs of EoE you would know the food was a fail with out.
Staying on formula until you get enough foods for a full diet .
Takes a long time KFA has a recipe database so you can find recipes that are free of whatever your avoiding as well as making food free parties etc..,,
There is also a book about a teddy bear with tummy troubles based on EoE from Amazon .
The top places in the country are Denver children's /Boston children's and of course cinninatti childrens .

If you call now for a second opinion they could get you in faster since you have a dx ( 2-3 month wait)
The diet is hard but it will stop the throat from forming strictures and furrowing so he can continue to swallow food .
Some kids need elemental diet plus steriods and then only have one or two foods - these are the rare kids though .

Most either need an ng tube trial and later a g tube if they can't drink the formula orally . Elemental tastes the worst since its amino acid based .
Neocate /elecare and eo28 splash are the main options
Most insurances give a lot grief about covering formula for EoE
Some states have passed laws requiring it .
Your durable medical equipment clause is one way to get it covered .
For a long time they thought DS had an EGid
They have found increased EOS in his lower GI tract more than once but
His is secondary to crohns
He does however have GI symptoms to foods so he is currently doing a modified rapid minor version of what you will be doing
He is EEN and adding one food at a time every so many days to see if there are symptoms . After a month he has 7 foods but he was miserable for so long and his GI agreed he has a "allergy " component to his GI tract ( DS is extremely atopic and test postive to a lot of foods he can eat without an IgE reaction but cause gi reactions).

Ask more questions if you need to
Our gi believes that at some point lower EGIds will be proven to actually be a precursor to early crohns and since how they are treated is very similar .
Should I ask him to be tested for celiac or is celiac a completly different issue? He had an allergy test done when he was 5 but I think I want to start all over and test for allergies again. will he always need to see an allergist and/or someone to treat the eoe? Can the allergies change? If so how do you tell if they've changed?

my little penguin

Staff member
Allergist combined with a gi as a team are standard for life
Standard allergy testing only can give some clues
You need someone extremely well versed in EoE
The food triggers tend to stay the same for life
But this is an extremely new disease less than 20 years or so
Which is why the need for an expert
Mom of a Celiac here... I think if you're going to test for Celiac, do it now before trying elimination diets. He needs to be eating gluten at the time of the test and you'll get false results if he's not. Just start with the blood test with your next set of labs.

my little penguin

Staff member
They should have seen it in the biopsied they already did
It's a standard part of pathology
Ask your gi
But he should have been cleared for that already
What is "normal" eos numbers in the lower GI? From what i understand his were elevated in his colon but not enough to diagnose an edig. Could the elevated eos and architectural disarray cause his diarrhea, painful bm and the waking to have a bm? (I just realized no one could really answer these questions... )

my little penguin

Staff member
There are no normal numbers of EOS in the lower gi tract ..,
Studies vary on the number cinnicinati has published a few papers on it as has chop .
The nice part is if he goes EEN plus top 6 free he may heal his lower gut issues as well .
Since partial EEN eleminating those food groups has been proven to work too.

I think your going to have to wait and see and get a second opinion in the mean time
Well mlp as always has done a great job explaining eoe.

As far as the colon the eos numbers tend to go down as you move your way through the colon.
So the ascending, and transverse would have the higher eos numbers and descending on down to the rectum should have less for true EC ( Eosinophilic Colitis). This is according to the GI at mayo clinic.
Now this was true for Grace, ( numbers in the 60's and 70' in ascending and transverse colon but it drops on down to 10 in the rectum). However they said the eos numbers are most often in the 100's for true EC.
I have my research/studies papers that back this up. I'll try to find it for you.

Your still at the beginning of this journey.
My only advice is trying to make the GI explain why the raised eos in the colon.
Thank you! I really appreciate everyone who has helped me. I still have a ton of questions but they are more specific to him so I'll ask his new GI whenever we're able to meet her.

What confuses me the most is his ascending colon is fine. The transverse and decending colon isn't fine(those are the areas with eos cells, disarray and lymphoid nodules). Until I can speak with his specialist though I think I'll still be left with a question mark.
Last edited:
Well the past couple of days he's been increasingly worried about how his stools have been (he's had diarrhea and loose stools) he also had trouble sleeping because his throat hurt. I found something online though, this organization gives kids capes and every time they go to the hospital for a scope they get a patch for their cape. He's excited about it. I haven't heard from the specialist so I emailed his GI to ask how the referral was going. The specialist was supposed to call mon...
Well I received an email from his current GI, unfortunately little Z doesn't qualify to see the specialist because he has eosinophils in other areas of his digestive tract (it's not limited to his esophagus). I guess she was running a study on EoE... (?) I'm feeling confused and a little frustraited. Meanwhile little Z has started complaining of his throat hurting and having troubleswallowing. His GI said he'll call in a few days to discuss treatment...which idk even where to begin with that...