food protein proctocolitis

[omelette]

Anybody have experience with this or more info?
My son (almost 1yr) was diagnosed with this on Wed. We've been going to the doctor since he was 2mos old saying there is something wrong with this baby's tummy and it took us this long for this diagnosis after me going continually to our doctor and the ped (small vent but life has not been easy for anybody in our house this past yr).
It is non IGE mediated food protein proctocolitis. Which means his blood work did not show any allergies but from symptoms, etc the allergists has labelled it this. We are waiting for blood results for IGE/IGG testing through a naturopath which will test 96 different foods so we'll see what those results tell us.
I've been told to cut all dairy out of my diet if I choose to continue bf'ing and he gave us a cow's protein free/hypoallergenic formula to try if we choose. I did cut out dairy and gluten a while ago but I wasn't strict enough in avoiding things such as casein.
I'm not finding a ton of info on this on the internet and don't feel like I didn't ask all my questions at our appt with the allergist b/c I was distracted by a crying babe. So I'm wondering if anybody else has had experience with this, how long did it take to resolve itself (apparently it is not a life long thing) and any other tips or info you may have.
Thanks.

[JaneS]

You mean FPIES?
http://www.google.com/search?sourcei...1US391&q=fpies

There is a "Parents of children with FPIES" forum here
http://www.kidswithfoodallergies.org/community.html

[omelette]

No, it's not FPIES. He does not have a reaction as mentioned in the link.
I guess the difference is that his is proctocolitis and the FPIES is enterocolitis. Not exactly sure what that means though.

[LaurieG]

I am not familiar with the term so I looked it up and found this:

http://www.ncbi.nlm.nih.gov/pubmed/10634300

Thus, in contrast to the infant with enterocolitis, features such as emesis, failure to thrive, significant anemia, and dramatic diarrhea are not seen.

So if I'm understanding it correctly it sounds like food related GI issues in a breastfed baby with the primary symptom being blood in the stool. I'm not sure how many people here have been given that exact diagnosis but many of us are dealing with babies who react to foods through breastmilk with GI symptoms of various severity.

As for how long it takes to resolve, I think it totally depends on the child. My DS2 had blood in his stool, but he also had chronic diarrhea. His diarrhea and blood resolved by around 1 yr (blood earlier) but then he remained anemic for a long time after that regardless of how much iron we supplemented (which tells me his GI system continued to not work properly). And I didn't realize it at the time, but now I know that other things going on with him such as his difficulty sleeping were probably other symptoms from the foods and those continued on well into the preschool years. My DD, who had even worse blood and diarrhea in addition to all the enterocolitis symptoms, still reacts to milk and soy with GI and behavioral symptoms. She will be 3 next month and has been off dairy practically since birth and soy since 6 months.

I think you'll find a lot of knowledgable Mamas on this board who are dealing with variations of the same thing.

Good luck!

[mamafish9]

I read the definition, and I don't understand how this differs from "standard" IgG reactions that lots of us have dealt with.

In which case, figuring out the offending foods and getting them out of both your diets is a great place to start . Allergists tend not to believe in IgG intolerances, and think all babes grow out of them. Sigh.

You can wait for results of your IgG testing, or you can start eliminating foods. I'd start with the top 4 intolerances, every last trace of them (check hidden ingredients, supps) - dairy, gluten, soy, corn. Those are the most common for IgG. You might consider taking those 4 out and then waiting on your IgG testing to learn more (know that the IgG panels are often not entirely accurate on a child that young, so take them as a guide, not as gospel).

[rhesp1212]

I'm so sorry mamma! We have been dealing with this plus rashes on the face as well. I totally feel for you!! I agree with Mammafish, definitely start eliminating foods and see if you see any improvement. We did ALCAT testing for IgG on my DS and it was horribly inaccurate...foods that we had seen significant reactions too showed up as safe on the test. But, I know not everyone has that experience. Our best tool was patch testing from an allergist and just doing food trials and eliminations.

I am praying that this resolves quickly for you and doesn't involve a huge list of foods!!

[omelette]

I'm not a 100% sure on the diagnosis but I guess I'm holding onto it b/c we've been trying to get this resolved for 10mos and finally someone has given us something.
He has had some blood in his stool but not much and not consistently and not for several months. He will scream for a couple of hours fart or burp and then be ok for a while until it happens again. Once he passed the meconium after birth he has not had a normal poop since and he has a lot of mucous with occasional blood. Also, as a baby he would have bm and 3 hours later be spitting up huge amounts of undigested bm. I've found one article that mentions this along with abnormal poops and lots of gas and colic like symptoms which is my baby and it is labeled food protein induced proctocolitis.
I've gone gluten free and cow's dairy free but did still do goat's cheese. So right now I'm going completely dairy free and soy free; I think I'll go egg free too. Apparently this is usually caused by milk or soy protein and sometimes egg protein but it makes no mention of gluten or other allergens. I just want this baby to be comfortable so he can enjoy his days and sleep at night.

[scsigrl]

From my look at this, the proctocolitis is colon and rectum VS. enterocolitis being small intestines and colon. Seems pretty much the same thing in the long run so I would think any FPIES advice is going to be pretty much the same thing. Avoidance for both of you just to be sure is the route I would go.

I think "they" label any intolerances (things that produce allergy like S&S but with negative test results) as FPIES these days. I don't see anything wrong with that. Some people like to have a name of what they are dealing with. It (FPIES) is often outgrown but not always, just like some other allergies!

Hang in there! It will get easier for you as you get more answers and figure out what the problem is. I don't remember if you have mentioned it, but I have found a food log a HUGE help in figuring things out!

There are tons of women here who have walked this road that you can gain so much knowledge from! Ask away!

PS- My DS has FPIES, allergies and Celiac's, so let me know if you have any specific questions I may be able to help with!

[AllyRae]

I don't have any advice, but I wanted to come lend my support. My 20 month old has FPIES, so while it's not the same, i sort of get what it's like.

[rhesp1212]

My son used to do the same thing with throwing up undigested BM 4-6 hours later when it should have been out of his stomach in approx. 2-3 hours. It is all related to the same thing...food sensativities. The way the GI dr. explained it to me is that the food causes inflammation of the stomach and the gut. The inflammation shuts down the receptor in the stomach that tells it to empty....thus the reason why stuff sits in their stomach for a long time, sours and they eventually throw it up. You're right, it's not like FPIES where they have profuse vomiting, etc. I totally know what you're talking about. The inflammation causes delayed gastric emptying! With my son, once we removed all of his triggers, that stopped completely. Unfortunately, mine is sensative to EVERYTHING...literally! The dr. told me that the biggest triggers she has seen for this type of thing is what I said earlier, basically the top intolerances and also beef, potatoes of any kind, winter squashes, the nightshade family, etc. With any luck, you're little one will only be sensative to a couple of things!

Many many kids that are intolerant to dairy are also intolerant to goat's milk as well, so I would highly recommend stopping the goat milk and using some other alternative for milk.

If you need any help, I'll be glad to if I can!!

[scsigrl]

rhesp1212- Thanks for that info! So the S&S are different but the causation is the same (meaning a food triggering the gut). It sounds as if the treatment (avoidance) is the same as well. Very interesting! Thanks again!

[omelette]

rhesp1212 - Sounds very similar to what's going on over here although the throwing up/spitting up has almost completely stopped but his poops are full of undigested food. Would that be similar in that it is not getting digested but comes out the other end? He will eat something and 24 hours later poop it out undigested with mucous.
How did you figure out how to eliminate all the right foods?
We had scratch testing done at the allergist but it all came back negative which is why he is labeled non-IGE mediated. We are still waiting for results from the naturopath for IGE/IGG test.
These poor little babies and their tummies.

[kjbrown92]

I agree about taking out the top 4 that were mentioned earlier (dairy, gluten, soy, corn) and yes that includes goat milk and any other mammal milk, and all forms of any of those foods. Then start a food journal. Are you still BFing plus he's eating solids? It makes it a little trickier because he's getting the food when he's eating it then for the next 3-4 days from you, but you're still looking at trends, and you could block rotate and see if you can find a safe block of foods to eat.

It seems like doctors want to make a diagnosis but it does really all seem to be the same thing. And I still think anything that says "food protein" is a misnomer because it's not always just the protein that's causing it (and seems more often than not that it's any part of the food when it's an intolerance). Sure, they all have different symptoms, but it's all food intolerances. For some people, it's behavioral, some it's lower intestinal, sometimes it's stomach, sometimes it's reflux, sometimes it's all of the above, and it changes too, so if you reintroduce a food, look for ANY changes. My DS (for dairy) went from projectile vomiting to screaming/waking at night to night terrors to butt rash to growing pains to stomach cramps to bedwetting over the last 10 years.

You are certainly not alone. Figuring it which foods are causing it is definitely the hardest part.

[rhesp1212]

That is exactly what happened with my DS as well, eventually stopped throwing up and his poop is often undigested foods, loose and mucusy....sometimes whatever he eats for breakfast comes out at lunch time...like it just goes right through him. The undigested food is likely due to inflammation in the stomach and gut so that the food wasn't digested properly. For us, it's a sign that that particular food is a no-go! That might be a good place to start for you too!

We started on this journey practically from birth and I started eliminating things when he was really just starting solid foods. When we started solids, the vomiting up foods hours later got worse and he started breaking out in rashes on his face...but they were all delayed by 12-24 hours before we saw the rash. We ended up doing a TED because we couldn't figure out what he was reacting to....turns out it was everything he was eating!! We first removed all dairy and soy when he was only a couple months old...saw huge improvements with the reflux, then when he started solids we ended up doing the TED. I was still nursing him at the time too. We tried adding food after food after food and within 6 months the only food we were able to add in was green beans and oats. Once we had enough foods, we began a rotation diet to help keep him from building up an intolerance to foods. However, for him, he eventually becomes sensative to it regardless...the rotation just helps prolong it! But, that is unusual for this to be happening. Hopefully yours will get better in time! We are still undergoing testing to find out why he is not getting any better and is actually getting worse with time.

Anyways....we did the TED together, and when I trialed a new food, I only gave it to him until I knew for sure it was safe adn then I began eating it as well. That way my BM was not contaminated and didn't prolong his reactions because he was getting a double whammy from me. I kept a very very strict food journal as well and noted any and all possible reactions. We also did PATCH testing through the allergist, and this was extremely helpful and reliable for us at the time. The place the food to be tested on a patch onto their back for 48 hours, remove and then read the results at 72 hours. Those that have no mark were negative and then the others had varying degrees of reaction (ie. red whelp, pustules, etc).

Usually, the things I look for with him having a reaction is any significant behavior changes (I have noticed that he gets really really bad, defiant, aggressive, whiney, etc. when he's having a reaction), undigested food is a sure sign for us that that food is a no-go, reflux, and/or rash on his face. If any of those pop up, we pull the food immediately. Wait for the reaction to stop before trialing a new food again. When we trial a new food, it gets done on rotation....day 1 new food....wait 4 days and try again. If he doesn't react the second time, then we start rotating it into his diet. It's a pain, but it's so worth it to see him happy, sleeping well, not refluxy, etc.

Hope this helps a bit and isn't discouraging you!! Most kids progressively get better over time once all of the offenders are out of their system and the gut has time to heal.

[omelette]

rhesp1212 - You've got a lot to watch out for. It seems so overwhelming at this point. I'm so close to trying to get him onto the formula so I only need to monitor what he is eating, as I just realized the almond milk I drink has soy in it and my favourite rice crackers have soy too. I feel terrible b/c my screw up of what I eat affects him so.
I will start a food journal again to help monitor both of us. He has had tiny little rough bumps that now I'm guessing are food related but otherwise no rashes or anything just the screaming from tummy trouble and the sick smelling poops, oh and he's been a bit dark under the eyes but I don't know if it's from food or lack of sleep.
What is a TED?
Thank you, your input has been really helpful.

[mamafish9]

Don't assume the formula will be a fix. If your son reacts to soy (intolerance, vs. IgE), he may react to any part of soy - oil, for example, not just the protein. (Most docs think you can only react to protein). And most/all of the hypoallergenic formulas contain soy oil.

It can be really tricky at first to get everything you need out of your diet - but once you figure out what foods are safe, it gets much easier. Hang in there, you'll get it sorted out! If you can get some time to go to the store by yourself, so you can read ingredients lists in peace, that really helps.

[omelette]

Originally Posted by mamafish9

Hang in there, you'll get it sorted out! If you can get some time to go to the store by yourself, so you can read ingredients lists in peace, that really helps.

I need to get some glasses so I can actually read the ingredients. Trying to read labels has made me realize how bad my eyes are.

[rhesp1212]

I agree with Mammafish....formula is not always a solution! My son reacted to Neocate because of his corn sensativity and to some of the oils that are in it. TED = total elimination diet....we went down to the foods that Dr. Sears recommends (Turkey, lamb, zucchini, yellow squash, potatoes, pears and rice....although we skipped the rice since we already knew it was an issue for our little guy).

Yea, I did the same thing with the almond milk not realizing it had soy in it!! Don't feel bad about it....It's hard, but once you get used to it, it's so worth it. I also agree, that most kiddos with intolerances and not IgE allergies react to any part of the food, not just the "protein". Check all of your vitamins and supplements too...many of them have hidden soy or dairy in them too.

If you do decide to try formula, don't stop with the BM. Pump and store so that if the formula fails you keep your supply up and can restart nursing if you want to.

You can do this!! I know how overwhelming it is, but it's totally possible and it makes it all worth it when you see them at baseline and how happy they are when they are feeling better!

[omelette]

How long would we both do the TED for?
Part of my concern for myself is weight loss. I've already lost weight this yr with nursing, cutting certain things out and stress and I'm needing to put on a few pounds to be at a healthy weight, I guess the thought of cutting down to such a bare bones diet seems like it's not the healthiest choice for me. I'm more concerned with my little ones well being but I also know I need to be in good shape to take care of him and to keep producing milk.
Can someone give me a general idea of what a days worth of eating would look like? Might help me wrap my head around it a bit better.

[mamafish9]

I wouldn't start with a TED - for all the reasons you mentioned, it's very hard on your body. I'd start by taking out the top 4 intolerance foods, every last trace of them (so watch out for hidden ingredients, supps, etc) - dairy, soy, corn, gluten. After a week on that diet, if you are seeing improvement, great. If not, remove the top 8 + corn (dairy, soy, corn, gluten, eggs, fish, shellfish, peanuts, treenuts), or anything else that comes back positive on the IgG test. If that doesn't work, and you can't get more clues from food journaling at that point, then, try a TED. But hopefully you can work out his trigger foods without going that extreme.