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Nic

Ibs

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We went to the ped. GI today. And I explained to him that Jacob, now 6, goes through monthly attacks of pain and the urge to poop when he doesn't really have to. After a much more detailed description of symptoms he said that he believes Jacob has IBS and all the rectal discomfort is due to an over sensitive rectum (just what the poor kid needs). Anyway, he said that due to the fact that we have had some bleeding that we need to do a colonoscopy. This is our second run with a colonoscopy and as I am sure anyone who has had one knows, I am completely stressed over the prep. Now they just called to give me a time for the procedure and they told me it would be late in the day because that is when this guy does his procedures. What? My six year old has to be on clear liquids for an entire day and then fast the whole next day until "late in the day". I'll tell you, if you have ever felt like you are going to snap, now is that time for me. I told them to double check on that and call me back. Has anyone ever heard of anything that works well for controling IBS?

Nicole

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Nic, most of us here on this board believe that IBS is the doctor's way of saying, "I'm full of B___S___."

Irritable Bowel Syndrome is a "garbage" diagnosis; it's what the doctors call it when they can't figure out what the problem is. It's not a diagnosis at all, it's a Syndrome--a collection of symptoms. If you look it up, the symptoms just happen to be identical to the symptoms of celiac.

I'm sorry if you have listed your son's symptoms and bloodwork elsewhere and I missed it, but--has a celiac panel been done? Was the blood in the stool itself, and black, or was it just red stains on the toilet paper? If it was the latter, that would not be cause for alarm, as it would most likely be from the rectum (probably from straining, possibly hemorrhoids) and not from the digestive tract at all. Did they do a stool test?

I would advise you to cancel the colonoscopy and make an appointment with a celiac specialist as soon as possible, even if you have to travel to another city to find one. In the meantime, you might try keeping a food diary of everything that goes in Jacob's mouth, to pinpoint what he's eaten the day or two BEFORE these monthly episodes.

Good luck!

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Hear, hear, Fiddle-Faddle. I know two people who in past years were diagnosed with this bogus "illness", and after I became celiac and started doing my research, enlightened them and urged them to give up gluten. Guess what? They're fine now. Off the expensive meds that did nothing (and that the docs may have been getting kickbacks from)...Sadly, my brother-in-law's daughter has had a painful few years with what was diagnosed as crohn's, and had a large chunk of her intestine removed. I cannot help but think that she could just be gluten intolerant...her father has some symptoms as well. But all I can do is communicate all my research findings to him...


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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He actually does have Celiac. He was diagnosed 2 years ago and has been gluten free since. They ran another panel about 6 months ago to make sure the antibodies were not elevated and he now comes up ok. They originally thought his constipation was caused by the Celiac and that it has persisted for so long because he has gotten in the habit of withholding. We now see that he does occassionally have constipation but he also goes through these attacks where out of no where his butt is in terrible pain and he constantly feels as though he has to poop even though he was going fine up until the day before. The blood was in the toilet and on the paper which we assume resulted from a fissure. The doctor feels that he needs to take a look in there to make sure we are not missing any other problems and to see how bad the tears actually are.

Nicole

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Nicole, is Jacob still consuming dairy? It is well known that dairy can cause constipation, as can other foods that somebody is intolerant to.

It is quite possible that another intolerance is causing these continuing problems, despite the gluten-free diet.

Mind you, it is NOT acceptable to book a six-year-old in such a way that he'll have to fast all that time. Who cares when the doctor 'normally' does those things. Tell him that an adult can handle that, a little boy cannot, and shouldn't be expected to.

Maybe (if you truly believe a colonoscopy is necessary), you could find another doctor, who actually cares more about his pediatric patients than his own convenience.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Ursa,

He does eat dairy. He had a RAST test last summer and he came back negative for other food allergies. Would it have shown up in that test? Also, it seems as though we have two seperate issues going on. Without getting too graphic, he does have the occassional constipation where it seems as though his bowels are slowing down for a few days and then he can't go for a couple of days. On those occassions we raise his fiber intake and his stool softeners and then he goes and all returns to normal. That part has at least become managable. Then we have this other problem where he is pooping normally with no problems at all and then all of a sudden one day he is running to the bathroom with this urgency like it is going to just come out. This will go on all day and my guess would be that he is having some sort of spasm. He actually described it as his butt feels like when daddy has the music on too loud in the car. My husband, sadly enough ;) , likes very heavy music so you can imagine when it is loud you get that pulsing feeling. I thought that was a pretty impressive description of a throb. When he is like this his stools are soft but for some reason he can't pass them without many, many tries. This can go on for days, even weeks. All the pain and discomfort associated with it seems to be in his rectum and not his stomach. I don't think I am explaining it well enough for you to get a clear picture of just how bad it gets but we had one of these bouts 4 weeks ago. We are still coming back from it. His "butt" hurts and he has spent the past 4 weeks not eating well and walking around with his hand down the back of his pants. We have even found him sleeping like this. He does not talk about it, will rarely admit to pain as he fears what will be done at the doctors. He remembers the enimas, the barium enima, and all the rectal exams he had 2 years ago when this thing started. He is a trooper, he will go to school through the worst of it, only asked to stay home once. On that day he sat on the toilet for 3 hours straight insisting he had to poop. Never did of course. Anyway, if this sounds like anything anyone else has ever seen, I am open to other suggestions.

Nicole

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Intolerances will not show up on allergy testing. I suspect that your son is intolerant to dairy, which would NOT show up on the RAST test.

You may have to do an elimination diet on your own, as your doctor is clueless. If it was my son, I'd eliminate dairy and soy for starters, to see if it makes a difference. His symptoms are VERY consistent with a casein intolerance.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Maybe you could keep a food journal for him to help pinpoint what foods (i.e. soy, dairy...) are causing what reactions.


Tapioca intolerant

First cousin dx'd with Celiac Disease

Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.

Gluten-free since June 2005

Dx with IBS February 2005

Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

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i think levsin is supposed to help with IBS.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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I would guess dairy. It sounds like what I used to experience when I tried to eat cheese and yogurt. (I don't try anymore.) You might think about eliminating dairy for a few weeks before scheduling any more invasive tests. If avoiding dairy (maybe soy too?) doesn't help, then go ahead with the tests. Does he itch? Is that why his hands go down the back of his pants? If so, he could have something like pinworms. (I have 4 kids and we've had them more than once around here. :ph34r: )


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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I have been giving the whole dairy versus IBS some thought. And after reviewing in my mind (over and over of course) what brought us to this point, here are my thoughts. Whatever is causing the attacks, this seems to be different. When he had that heavy bleeding about a month ago he was not constipated. He pooped normally that day, it was not hard, there should have been no struggle. But that day seems to be the turning point. Since that day he seems to be in discomfort all day, every day. In the past, the discomfort only lasted as long as one of his "attacks" which would be no longer than a week. In the past, it always started with constipation. So what made him bleed that day and why won't it go away? I think I am going through with the colonoscopy. Something is wrong in there because this isn't normal, not even for him. I hope I am not making a mistake on this and putting him through something invasive for nothing. But I feel as though they have to see something in there. This poor kid is suffering constantly.

Nicole

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If your gut tells you to go through with it, then I would. Like other's have said, it could be as simple as dairy, but I guess with bleeding, etc. it could definitely be something else going on.

I feel for you have to go through with this colonoscopy on a six year old. My colonoscopy was scheduled late in the day too and it wasn't fun. I was starving, by the time I got in. I would wait until they can fit you into a morning appointment. Maybe they only have afternoon, because they are trying to get him in sooner. I did survive and I slept in until 10:00am the day it was done, but I was really hungry from 11:00 until 4pm.

Take care,

Monica

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Nicole, you're the mother, and if you feel that there is something else going on, you are right in wanting to investigate it. It is possible that there is a twisted bowel or an ulcer or any number of things a colonoscopy might detect. I hope it can all be figured out and fixed!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Nicole, you're the mother, and if you feel that there is something else going on, you are right in wanting to investigate it. It is possible that there is a twisted bowel or an ulcer or any number of things a colonoscopy might detect. I hope it can all be figured out and fixed!

Excellent points--I did not think of these possiblities. My only worry is that your current doctor might not detect them!

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Nicole, you're the mother, and if you feel that there is something else going on, you are right in wanting to investigate it. It is possible that there is a twisted bowel or an ulcer or any number of things a colonoscopy might detect. I hope it can all be figured out and fixed!

I also read yesterday that people with chronic fissures would display the symptoms he his showing. It said the the procedure to fix that would be fairly simple as well. I hope it is something that simple. I feel as though the worst case would be that they find nothing and he has to come home like this with no hope of a solution. I feel like telling them not to come out of there until they find something ;) . We have been on this rollercoaster far too long.

Nicole

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Some questions off the top of my head (you may already have answered these):

Is he getting plenty of fiber in the form of fresh fruits and vegies? Is he eating any porbiotics (yogurt? kefir?) Is he dairy-intolerant?

Sorry if you have already answered these!

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He eats more vegetables than fruit but I give him Yummi Bear Fiber everyday. I don't believe he is dairy intolerant but I don't know for sure. I just paged the gastro. because he has been in horrible pain all day. The doctor said to try a Ducolax Suppository (sp?) and if it does not work and he does not feel any better than I should take him to the ER. So I am hoping for the best.

Nicole

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I took him for the Colonoscopy yesterday. Let me first say that the prep was awful for him, vomiting, shaking, just a mess. But anyway, the doctor took about an hour. He then came to me with a bunch of pictures that I get to keep for my records and said, "has Jacob ever been diagnosed with other food intolerances" (he was not the doctor who diagnosed him with Celiac). I asked him what he saw and he said that Jacob has a lot of white bumps in there and then showed me the pictures. He said usually when they see that it means a food intolerance. Should have listened to you guys in the first place. He said he took a lot of biopsies and we will wait for the results and see what it shows. Then we will persue testing for food allergies. He has already had a RAST test and it was negative for everything. What other testing do they do? I know it would be better to just start eliminating now but I can't even imagine telling him he cannot have milk anymore. Are there any good substitutes for putting in cereal, if not for drinking?

Nicole

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At least it sounds like you have a good doctor who's willing to work with you.

I like the vanilla almond milk for cereal and it turns into a fabulous chocolaty milk at then end of your coco pebbles. I use unflavored rice milk for cooking, but only because my store doesn't have unflavored almond.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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