Intestinal Bleeding?

[Christdefinesme]

Have any of your children suffered from intestinal bleeding?
Our issue (my 4 yr old boy) is minor but constant, we have been going through testing, but I am just wondering if anyone else has had the issue and what the cause was.
We found through a colonoscopy (THAT is something I don't want to put my kid through again!!) that he has "lymphoid hyperplasia" (lymph tissue in intestines over-reacting to something and breaking blood vessels) that was suppose to resolve on it's own (normally it does), but it hasn't, so we are now looking for food allergies.
Has anyone else dealt with intestinal bleeding with their kids?
Thanks!

 

[JulySheMustFly]

Look into gluten and wheat intolerance. Because my almost 4 year old is a celiac it is something we keep a close eye on with her. Thankfully we've not had any problems yet but she was diagnosed at 2 because of a family history.

 

[Christdefinesme]

Look into gluten and wheat intolerance. Because my almost 4 year old is a celiac it is something we keep a close eye on with her. Thankfully we've not had any problems yet but she was diagnosed at 2 because of a family history.

I have been told to look into this by a couple of people, we are doing a RAST next week, but does the RAST test for wheat, too? And, would Celiac's show up, or is there other testing that would need to be done?

 

[JulySheMustFly]

This may give you a place to start your research.

We didn't elect to do any official testing. There was enough of a genetic history in our family along with our daughter hitting almost every symptom of gluten intolerance in children that it was a diet change only. Of course we monitor some things closely with our family doctor but have not urged us to do any testing because of the results we've had with diet change.

It is my understanding that the RAST does not pick up gluten intolerance or hypersensitivity. Because the body does not have an allergic reaction to gluten but more so an inability to process the proteins properly.

Testing for celiac can be a blood test or a biopsy. This might help out with understanding the tests. For us, we've chosen to not go with either because the testing requires the patient to be on a gluten containing diet and it is not something we are willing to allow Bird to endure or for us to have to deal with the situations that come up while she is eating gluten containing foods.

 

[Christdefinesme]

This may give you a place to start your research.

We didn't elect to do any official testing. There was enough of a genetic history in our family along with our daughter hitting almost every symptom of gluten intolerance in children that it was a diet change only. Of course we monitor some things closely with our family doctor but have not urged us to do any testing because of the results we've had with diet change.

It is my understanding that the RAST does not pick up gluten intolerance or hypersensitivity. Because the body does not have an allergic reaction to gluten but more so an inability to process the proteins properly.

Testing for celiac can be a blood test or a biopsy. This might help out with understanding the tests. For us, we've chosen to not go with either because the testing requires the patient to be on a gluten containing diet and it is not something we are willing to allow Bird to endure or for us to have to deal with the situations that come up while she is eating gluten containing foods.

Weeelllll, they already did biopsies when they went in for the colonoscopy, but I don't know if they were looking for Celiac's or not, I just assumed they wanted to look for things like cancer:o..........all tests came back "normal" ........I should ask at our appointment, though, obviously depending on the RAST results.

What are some symptoms your girl has with gluten/wheat?

I am really trying to be calm about the bleeding, the doctors keep on and on and on saying "he's fine, he's normal, it's really not a lot of blood, his blood counts are normal", etc.
But when your kid has blood dripping out of him on every bowel movement, and you know that it's not a fissure or hemmerhoids, it's quite worrisome.

We've had a break for a couple of months (once or twice a little bit), but now it's back every day, the same as it was before the colonoscopy. He's not in pain or acting wierd, but it's not right. I don't care what doctors think is "a lot" of blood, it sure is "a lot" to me. One dr. at the ER asked me if it was 1/4 cup or more, and I did this to him and said "if that was the case, I would imagine it would be considered a hemorrhage, right? (which obviously wasn't happening) To me, 1 tsp of dripping blood during a bowel movement (plus what's already mixed in the stool) every day is a lot! You say "a lot" to a doc, and they look at you with that stupid skeptical "yeah, right, you're an over-reacting parent" look. Don't you hate that look???!! It's really hard to just sit and wait and wait and wait for tests to be done, results, opinions, etc. Blah.

I am feeling he's GOT to have some sort of food allergy/intolerance, because when he had the colonoscopy, he had no bleeding at all for quite a while, and I was wondering if it's because they cleaned him out and his insides got a "break". I'm freaking out that nothing will show up on the RAST and we'll have NO idea what's going on. I hate that feeling.

I'm rambling, please share your thoughts and experiences. I really appreciate the input.

 

[JulySheMustFly]

I can only imagine how frustrating it all is. I've seen my mom worry over my sister's digestive issues since I was 2. She tried to hide it and be "strong" but it shows through. A kid knows their mom ya know. A great deal of my experience with my sister is on the more extreme end so I hesitate to share because I don't want to fuel any more worry for you.

I'll see if I can find the little check list I had when we first suspected things with Bird.

 

[JulySheMustFly]

This isn't exactly what I was looking for but it is a great resource. Bird had so many of these symptoms and every one of them for children under 3 plus some like an off skin color, darkness around the eyes.

 

[Hadassah]

Look into gluten and wheat intolerance. Because my almost 4 year old is a celiac it is something we keep a close eye on with her. Thankfully we've not had any problems yet but she was diagnosed at 2 because of a family history.

What she said!

It sounds like some serious food issues imho... I remember when I was at my worst with gluten issues that I often had intestinal bleeding of some kind from time to time, it scared me really bad, but it was just "IBS" symptoms according to the doctor and not really to be worried about until both my sister, mom and dad were diagnosed... it seemed logical to try what they were doing and things cleared considerably. I haven't had bleeding at all since!

And she's right -- Mommies know their babies way better (you're with your kids all day long!!) than a doctor usually will just from a few exams. Trust your gut.

 

[JulySheMustFly]

Doh, this is the link I meant to put in my last post.
http://www.csaceliacs.org/celiac_symptoms.php

 

[Christdefinesme]

Thanks for the link, I really think it's not as serious as ciliac's, wow, that's pretty intense. He has no other symptoms, just bleeding. I'm still going to ask the GI do, though.
Really, his lymph nodes in the intestine are over-reacting to something.....get inflamed, and the bleeding begins. If they find nothing on the RAST, I'm just starting my own elimination diet. I'll start with milk, I don't know why, I feel pretty solid on that one, then if that's not it, I'll move to gluten, etc.

I talked to my GP yesterday, to see if some environmental allergy or illness could cause this in the intestine, and he said that lymph systems are mostly organ specific, that it really most likely is something in the intestinal system causing that particular lymph system to react.

We shall see. We will have a fun week taking stool samples at home - joy, joy, joy .

 

[Christdefinesme]

Ummmm - more advice?

RAST testing all came back normal, but I found out through reading and through GI doc that people can have delayed responses/allergy that is a T-cell response (different immune response than is tested on RAST), so, we are not positive yet if any allergy. BUT the GI doc wants him on a laxitive (but IMO, he doesn't need it, already soft stools), she obviously wants them softer to see if it helps stop bleeding.

BUT, I would rather give him prune juice or something, than put him on a laxitive, which creates havoc in body if used longer than 2 weeks, PLUS, I WANT the CAUSE of immune response to be found, not just solving symptoms.

We are referred to an allergist, but at this point it's a long waiting list. (am writing GI doc today, to see if she can pull strings to get us in) GI doc told me not to go ahead yet with elimination diet until seeing allergist, they can do skin tests that may turn up something that the RAST didn't.

What would you do?? I really don't think it's celiacs, this GI doc's specialty is celiac's.

 

[JulySheMustFly]

That's great if it isn't celiacs, which can be really frustrating to do things like go out to eat. (we did this yesterday and ended up making some bad choices we are paying for today.) Anyway, I don't know what I'd do. I know that I'd want to get to the source not just treat the symptoms but how to get drs to work like that is hard.

 

[Christdefinesme]

That's great if it isn't celiacs, which can be really frustrating to do things like go out to eat. (we did this yesterday and ended up making some bad choices we are paying for today.) Anyway, I don't know what I'd do. I know that I'd want to get to the source not just treat the symptoms but how to get drs to work like that is hard.

I'm sorry.

Yeah, I have a friend in church with celiac's - I cook every week and her hubby is always coming to ask ingredients. I have actually changed some of my recipes so that she can eat something.

The source is my goal........but I'm anxious.

The docs keep saying "it's benign, he's not going to get sicker from this, he's healthy, all tests are normal, he's fine, it will resolve, kids grow out of this"... blah blah blah. I am trying so hard to listen to that, but then he has a BM, and I see the blood, and the frustration and anxiety come back again. And, I know the blood makes my little guy anxious, too. He now FREAKS the littlest scratch, asking if blood is going to drip from it. (we don't go around making a big deal about the bloody stool, but I can tell he's trying to process it through other means.....)

The funny and frustrating thing is that the docs say this (everything's fine), but then when asked how common it is: haven't seen it much.......when asked: kids who have (lymphoid hyperplasia) how common is it to keep bleeding like this: never seen it, but one of my colleagues has a patient who has been bleeding for 6 months like your son. And these are people who treat kids all the time with all gut issues. They don't really know what to do, because this really isn't common, and I feel that they assume it will clear up. I feel deeply there's a cause that needs to be found. And when pressed, the GI doc doesn't feel this is "normal" either, just benign (I'm supposed to be overjoyed that it's a benign condition). Benign seems to equal "live with it and it will go away."

I'm rambling.

Anyone else have any thoughts?