Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Bleeding Toddler And A 2 Month Wait To See Gi?


  • Please log in to reply

18 replies to this topic

#1 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 30 August 2010 - 11:42 AM

Is this the norm when you have internal bleeding? Am I thinking it's more serious and it's really not? My 2 year old son has exhibited signs of intestinal bleeding with black stool and with fresh blood mixed in with his stool 4 times in 2 weeks and nobody but his unknowledgable Ped. will see him for this sooner than 2 months? How can I get them to be more proactive with him? I worry, he's only 2!

Thanks for letting me freak out a bit, nobody else understands.
  • 0

Celiac.com Sponsor:

#2 gary'sgirl

 
gary'sgirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 266 posts
 

Posted 30 August 2010 - 02:22 PM

This same thing happened with my daughter and my son. I noticed blood in my daughters diapers at about 5 months and I think around 6 weeks for my son.

We had the same problems with the doctors - exactly the same. My ped. thought it was a dairy and/or soy problem, but I went off of those for 8 months with no improvement (I was nursing her at the time).

It's a long story, but after researching their symptoms my self for a long time I came across the symptoms for Celiac and both of my children had almost all of the symptoms and I had at least 20 myself.

We finally saw the Gi for my daughter and I told him every thing and my thoughts about them (and myself) having Celiac. He disregarded the celiac thing and thought that my daughter was just constipated and gave us a prescription laxative. My daughter and son, would have D, but only a couple of times a week some times only once in a six day period. My natural doctor said she thought that it was constipation that caused the bleeding, but that after not being able to "go" for too long the body would cause her to have D. Once I talked with the natural doc. about my concerns of Celiac (I was just getting diagnosed with it at this time), she thought that the celiac was the cause of the constipation.

Shure enough after taking them off of gluten the blood went away and they started sleeping better and eating better (my daughter had been eating less and less as time went on until she was only eating a couple of spoonfuls of apple sauce a day).

I don't know if any of this was too confusing, but if you think it might be gluten you could just take him off of it - I know that he wouldn't get officially diagnosed, but it might not be worth the worry while you wait for those stinky :P doctors to see him.

If you have any questions, I am happy to answer them the best that I can.

I hope things work out and that you get to feel less stressed soon. It's the worst to be going through this with a child.

~Sarah
  • 1

#3 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 30 August 2010 - 02:25 PM

2 MONTHS!!!!!!!! I would be freaking out also. I would call the office and ask to be put on the cancellation list. That way if someone calls at 9 am and says they can't make their appointment you can slide in. This of course only will work if your GI is close enough. If you should find any fresh blood in his diaper, as in not with a bowel movement or if the amount you see in a movement increase get the little guy and his diaper into an ER. If he should become listless, pale, lips get a bluish cast, he appears to be in pain or his tummy feels hard and/or he starts to run a high fever that would prompt me to visit the ER also.
I am sorry this is taking so long for the doctors to address. If he is acting fine and not in pain I would try not to worry too much.

I also agree with the previous poster. If you take him off gluten and he improves then you have your answer. The only problem would be if you decided later that you really need an 'official' diagnosis as that would require you to regluten the little guy.
You also have the option of going with Enterolab to see if he is making antibodies and if so to what. They can test for gluten, soy, yeast and casien. Most doctors don't accept the tests and they do not diagnose celiac but it can be helpful.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 30 August 2010 - 02:36 PM

I'm sorry it took so long, Drs can be so frustrating! I wish they'd do more listening and less verbal diarrhea of their own thoughts KWIM?
  • 0

#5 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 30 August 2010 - 02:40 PM

Yes! 2 Months! My husband was furious! So much so, he went outside and cleaned the siding LOL I am watching his diaper but I am thinking it may simply have been the barley I trialed a bit over 2 weeks ago now. The poop was a definite positive in my book the day afterwards, the next was black and then next 3 were with fresh red blood and todays seems normal. Doesn't gluten stay in the system about 2 weeks? His ped. said it wouldn't have been the cause of his red bleeding a week and a half later, what do you think? He did order a blood test for anemia and was told it was fine.

2 MONTHS!!!!!!!! I would be freaking out also. I would call the office and ask to be put on the cancellation list. That way if someone calls at 9 am and says they can't make their appointment you can slide in. This of course only will work if your GI is close enough. If you should find any fresh blood in his diaper, as in not with a bowel movement or if the amount you see in a movement increase get the little guy and his diaper into an ER. If he should become listless, pale, lips get a bluish cast, he appears to be in pain or his tummy feels hard and/or he starts to run a high fever that would prompt me to visit the ER also.
I am sorry this is taking so long for the doctors to address. If he is acting fine and not in pain I would try not to worry too much.

I also agree with the previous poster. If you take him off gluten and he improves then you have your answer. The only problem would be if you decided later that you really need an 'official' diagnosis as that would require you to regluten the little guy.
You also have the option of going with Enterolab to see if he is making antibodies and if so to what. They can test for gluten, soy, yeast and casien. Most doctors don't accept the tests and they do not diagnose celiac but it can be helpful.


  • 0

#6 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 30 August 2010 - 03:18 PM

Yes! 2 Months! My husband was furious! So much so, he went outside and cleaned the siding LOL I am watching his diaper but I am thinking it may simply have been the barley I trialed a bit over 2 weeks ago now. The poop was a definite positive in my book the day afterwards, the next was black and then next 3 were with fresh red blood and todays seems normal. Doesn't gluten stay in the system about 2 weeks? His ped. said it wouldn't have been the cause of his red bleeding a week and a half later, what do you think? He did order a blood test for anemia and was told it was fine.


All I can refer to is my own experience but after I went gluten free I started to have bleeding for about 3 days after my GI reaction hits if I get a good amount of gluten. It usually takes a couple of days for the GI reaction to hit me and others also can have a delay in those symptoms. I also will pee pink for a week or so. Oddly enough before I went gluten free I never had any bleeding issues. I, of course, can't say that is what happened with your little guy.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 30 August 2010 - 03:25 PM

All I can refer to is my own experience but after I went gluten free I started to have bleeding for about 3 days after my GI reaction hits if I get a good amount of gluten. It usually takes a couple of days for the GI reaction to hit me and others also can have a delay in those symptoms. I also will pee pink for a week or so. Oddly enough before I went gluten free I never had any bleeding issues. I, of course, can't say that is what happened with your little guy.


This is what seems to be happening here. My son would always have his reactions 18-24 hours later; this was his first time bleeding though. Gosh, the more I ask questions about celiacs and my son, the more it seems it's a sure fit diagnosis for him. I cannot wait to figure SOMETHING out about this!
  • 0

#8 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 31 August 2010 - 03:18 AM

This is what seems to be happening here. My son would always have his reactions 18-24 hours later; this was his first time bleeding though. Gosh, the more I ask questions about celiacs and my son, the more it seems it's a sure fit diagnosis for him. I cannot wait to figure SOMETHING out about this!


Have you considered having him tested with Enterolab? I know they don't diagnose celiac but they can tell you if he is making antibodies and you could take him off gluten for up to year and the antibodies can still be found.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 31 August 2010 - 06:43 AM

Have you considered having him tested with Enterolab? I know they don't diagnose celiac but they can tell you if he is making antibodies and you could take him off gluten for up to year and the antibodies can still be found.


Isn't this really expensive? We cannot afford to breath right now and are anticipating a drive (fuel costs)to see a good doctor for him and that alone is going to kill us. I would LOVE to get that to get somewhere!
  • 0

#10 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 31 August 2010 - 07:07 AM

Isn't this really expensive? We cannot afford to breath right now and are anticipating a drive (fuel costs)to see a good doctor for him and that alone is going to kill us. I would LOVE to get that to get somewhere!

Check with their website. You can order just the stool panel for gluten, I think. I had a full workup but without the gluten test, I had been diagnosed for 5 years at that point but the tests including gene panels were around $300. Just the stool test would be a lot less. I would also consider calling them and explaining your financial situation and the little guys issues and asking what they would advise you to do. I don't know if it is even possible but perhaps they might be able to discount for you. You don't know without asking.
Also if he is gluten free there isn't going to be a lot that the specialist can do celiac wise without a gluten challenge. Do keep that in mind as if his issues are gluten related nothing will show up if he is gluten free or gluten light. I'm sorry I don't remember but have you had your regular ped do a blood test while he was still on gluten? If he has been gluten free and a gluten challenge like you did with the barley, is positive ie. he reacts, IMHO you already have your answer.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 31 August 2010 - 07:09 AM

Check with their website. You can order just the stool panel for gluten, I think. I had a full workup but without the gluten test, I had been diagnosed for 5 years at that point but the tests including gene panels were around $300. Just the stool test would be a lot less. I would also consider calling them and explaining your financial situation and the little guys issues and asking what they would advise you to do. I don't know if it is even possible but perhaps they might be able to discount for you. You don't know without asking.


But does it diagnose celiac or the possibility of celiac? I don't quite understand this :) I'm sorry for so many questions.
  • 0

#12 O.N.

 
O.N.

    Community Member

  • Advanced Members
  • PipPipPip
  • 30 posts
 

Posted 31 August 2010 - 08:46 AM

Is this the norm when you have internal bleeding? Am I thinking it's more serious and it's really not? My 2 year old son has exhibited signs of intestinal bleeding with black stool and with fresh blood mixed in with his stool 4 times in 2 weeks and nobody but his unknowledgable Ped. will see him for this sooner than 2 months? How can I get them to be more proactive with him? I worry, he's only 2!

Thanks for letting me freak out a bit, nobody else understands.

I would try to give K1. If your kid is vitamin K deficient, which happens to celiacs and infants, you will see some improvements with internal bleeding within 3-5 days. I don't know about the children dosage though - I was taking 1000 mcg/day and found improvements with bruising and rectal bleeding in 3-4 days. Vitamins K1 shouldn't hurt, as I know. B)
You can ask your doctor's advice, just to be on the safe side.
  • 0

#13 gary'sgirl

 
gary'sgirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 266 posts
 

Posted 31 August 2010 - 09:31 AM

Yes! 2 Months! My husband was furious! So much so, he went outside and cleaned the siding LOL I am watching his diaper but I am thinking it may simply have been the barley I trialed a bit over 2 weeks ago now. The poop was a definite positive in my book the day afterwards, the next was black and then next 3 were with fresh red blood and todays seems normal. Doesn't gluten stay in the system about 2 weeks? His ped. said it wouldn't have been the cause of his red bleeding a week and a half later, what do you think? He did order a blood test for anemia and was told it was fine.

When I read this just now it jogged my memory. A couple of months ago I noticed my son was eating something and I hadn't given him anything to eat. I went to see what it was and... AHHH! GLUTEN! He had somehow found a multi grain pretzel (a kind that we had eaten before going gluten free). I have no idea what happened, but we think that although we cleaned out and vacuumed our couches after taking gluten out of our lives that it had gotten stuck up in the couch some where and some how had gotten dislodged.

Anyway, he found it and had had at least a bite before I got it away from him.
Within a couple of days (I don't remember exactly the number... 1-3 maybe?) He again had blood in his stool, and it lasted for a couple of weeks. - Sorry I can't remember the time lines perfectly - my brain isn't working right still. But, it sound just like what you have had happen with your son. I really think that could be what's going on with him too.

Does you son have any other symptoms? Is he acting like he doesn't feel well?

I really think if he hadn't been on gluten and you just tried the barley, you probably won't get anywhere with the GI - at least if his symptoms clear up.
Then again, hopefully you get to see one that is a lot better than the one we saw - he just treated me like I was making everything up and didn't think there was a possibility of my kids having Celiac.

I am so sorry you are going through this! It really sucks!!!
  • 0

#14 brendab

 
brendab

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 165 posts
 

Posted 31 August 2010 - 09:56 AM

Don't you just LOVE when your little ones find treasures in the couch? LOL

His symptoms are all intestinal and he doesn't ever seem like he's in pain although the times he's eaten something he shouldn't have, he wakes up several times during the night and cries; I don't know if that is related or it's his age? When he has a poop after having gluten it's normally yellow, "fluffy", sometimes looks like it's filled with sand, sometimes gray like modeling clay, smells somewhere between vomit and mothballs, undigested foods, sometimes floating, burns his skin, and always an enormous amount! When I trialed the barley the only other symptom he's had was dark, sunken eyes along with the nasty poop followed by the blood in his poop.

When I read this just now it jogged my memory. A couple of months ago I noticed my son was eating something and I hadn't given him anything to eat. I went to see what it was and... AHHH! GLUTEN! He had somehow found a multi grain pretzel (a kind that we had eaten before going gluten free). I have no idea what happened, but we think that although we cleaned out and vacuumed our couches after taking gluten out of our lives that it had gotten stuck up in the couch some where and some how had gotten dislodged.

Anyway, he found it and had had at least a bite before I got it away from him.
Within a couple of days (I don't remember exactly the number... 1-3 maybe?) He again had blood in his stool, and it lasted for a couple of weeks. - Sorry I can't remember the time lines perfectly - my brain isn't working right still. But, it sound just like what you have had happen with your son. I really think that could be what's going on with him too.

Does you son have any other symptoms? Is he acting like he doesn't feel well?

I really think if he hadn't been on gluten and you just tried the barley, you probably won't get anywhere with the GI - at least if his symptoms clear up.
Then again, hopefully you get to see one that is a lot better than the one we saw - he just treated me like I was making everything up and didn't think there was a possibility of my kids having Celiac.

I am so sorry you are going through this! It really sucks!!!


  • 0

#15 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 31 August 2010 - 02:29 PM

But does it diagnose celiac or the possibility of celiac? I don't quite understand this :) I'm sorry for so many questions.


Enterolab does not technically diagnose celiac. But they can tell you if he is producing antibodies to gluten. We don't produce antibodies to stuff our body want to have in it.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: