Eos Colitis is so confusing.. blood in stool yet again!

[Kailey's mom]

This is so freeking flustrating. My daughters blood testing is perfect, IGG, or IGE.. one of them.. the one that is supposed to tell if an allergic reaction is going on. I thought things were going ok; until today when she has blood in her stool again!!! It's my fault, I slipped on her diet (which is supposed to be 100 percent elecare, and 1 week food trials) and let her pick at things during the holidays. Damn it! So what is up with the blood tests being normal? No rash this time, only symptom is blood in stool and off the wall behavior. This is hard, i mean i know it could be so much worse.. but it still sucks, and I don't know how to monitor symptoms because my dd's seem to be extremely delayed. I have NO CLUE whatsoever what food caused this. So tommorrow it's back to elecare 100 percent. I was just HOPING that letting her eat a little bit of different things wouldnt' hurt.

[Kailey's mom]

blood in stool is worse today... I wish I knew what exactly triggered this kind of nasty reaction. I called GI, and he just said to go back to 100 percent elecare, and bananas. Also to give her the reflux meds 2x/day.. ?? it's fresh blood, It's not coming from her esophagas.. but anyway, that's the update. Of couse if it gets worse, I have to call back. It so un nerving and to me, scary, seeing blood where there isn't supposed to be blood!!!!!!!!!!

[LaurieG]

I'm confused. So have you done both IgG and IgE testing?

I know how stressful blood in stools is. DD still gets it sometimes but mostly we've identified her triggers thru lots of food journaling and trial and error.

What things did she pick at over the holidays? Any chance of narrowing down that way?

[logan&jordansmommy]

I don't have much advice. Just wanted to say my boys always had normal IGG and IGE levels when they were reacting to foods too. It was just recently that my son got a EOS colitis diagnosis and his IGE level was slightly raised (he is 5 1/2 and has had food issues since he was 9 mos and blood was always normal). The IGE level was raised before a month or so before we got the EOS dx and his immunologist actually said even though it was high it wasn't a big deal. In other words his blood tests are not matching his symptoms....he has always been that way and it is frustrating I know! Hang in there I wish I could say more!

[Kailey's mom]

Originally Posted by LaurieG

I'm confused. So have you done both IgG and IgE testing?

I know how stressful blood in stools is. DD still gets it sometimes but mostly we've identified her triggers thru lots of food journaling and trial and error.

What things did she pick at over the holidays? Any chance of narrowing down that way?

Yes she's had both the Igg and Ige done * I"m 99 percent sure, I'll double check on the 14th* and it is always normal.

She had quite a bit of items with traces of milk.. although who knows what other ingredients were in these things. cake, cookies, stuffing, sweet potatoes, marshmellows, corn on the cob w/butter, regular store bought bread, homemade mashed potatoes, green bean cassarole, ETC.. If you look at all the ingrediets, I"m sure there is close to 200

[Kailey's mom]

Originally Posted by logan&jordansmommy

I don't have much advice. Just wanted to say my boys always had normal IGG and IGE levels when they were reacting to foods too. It was just recently that my son got a EOS colitis diagnosis and his IGE level was slightly raised (he is 5 1/2 and has had food issues since he was 9 mos and blood was always normal). The IGE level was raised before a month or so before we got the EOS dx and his immunologist actually said even though it was high it wasn't a big deal. In other words his blood tests are not matching his symptoms....he has always been that way and it is frustrating I know! Hang in there I wish I could say more!

Hugs to you too, sorry you are dealing with this too, and to the other PP Yes, its' flustrating because it would be so much easier to monitor progress if the blood tests matched.. it's weird, but we're not alone in this at least. DD always has had GI issues, horrible acid reflux as a baby, and it started getting better when she was 2. She has what the doctors said was chronic constipation, than after the skin testing, they thought she had food protein induced interocolits.. then the visable blood in the stool, colonoscopy, and now is diagnosed from biospy results : eosinophilic colitis. She was diagnosed late oct/ early Novemeber of this year. Her old GI highly suspected E.E., but both of the endoscopies were neg. Guess he just checked the wrong side Hang in there, and post often, maybe we can help eachother during this.

Thanks everyone! on a side note, behavior is improving now that dd is on elecare only, miralax, and reflux meds. I'm grateful that she will drink it!

[LovnMyBoys]

I know this is a late and I hope your little one is feeling better.
Eos triggerss do not show up on allergy tests, which yes makes figuring out the whole puzzle even harder.
Neither of my kids has had any positive allergy tests. My oldest has Eos colitis and is doing well with the top 8 allergens removed. My younger one has Eos enteropathy (everywhere except his esophagus) and he only has 5 safe foods. Most of my younger guy's reactions involve blood in the stool so that's pretty common here.
The one part of your post that caught my attention is the one week food trials. Is that always enough time to see a reaction for your child? Most eos kids need at least 2 but usually 3 week trials. My little guy has had some of his worst reactions after 10 days so three week trials are the norm here.
Good luck!

[Kailey's mom]

Originally Posted by LovnMyBoys

I know this is a late and I hope your little one is feeling better.
Eos triggerss do not show up on allergy tests, which yes makes figuring out the whole puzzle even harder.
Neither of my kids has had any positive allergy tests. My oldest has Eos colitis and is doing well with the top 8 allergens removed. My younger one has Eos enteropathy (everywhere except his esophagus) and he only has 5 safe foods. Most of my younger guy's reactions involve blood in the stool so that's pretty common here.
The one part of your post that caught my attention is the one week food trials. Is that always enough time to see a reaction for your child? Most eos kids need at least 2 but usually 3 week trials. My little guy has had some of his worst reactions after 10 days so three week trials are the norm here.
Good luck!

Thank you for posting!! I was wondering if a week was enough time, the allergist's here arent' too familiar with eos so we are winging it. I'll be doing the trials like you are for now on! The blood is gone; and so far she is still ok with banana's; plain chicken, and potatoes. She's getting patch testing done mid march so I'm hoping it will help, but I don't plan on introducing anything new until then. Sorry your kiddo's have this too!!!! again, thank you so much for the info, we'll be using this for now on

[preemiemamarach]

I would look into specialty centers for Eosinophilic disorders and see if any exist in your state. My son has all the symptoms of EC, but no eosinophils in his system anymore- although he's been on an elemental diet for over a year, so I'm not sure that means much now.

We always do at LEAST two weeks per food. It's a pain, but it's needed. Also, we get him back to baseline on his formula (he is intolerant to the corn in elementals, so we have to construct our own, basically) between food trials. The few times we've let him have 'tastses' of things, he's declined rapidly and it's taken months to get him straightened out.

PP's comment makes me wonder if we might eventually get the diagnosis. He is intolerant of all intact protein, which means he might have a metabolic disorder instead, and I really don't want to protein-load him to create damage for a scope to see if there's a chance he could have neurological issues from it.