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
- - - - -

My 12 Yr Old Son Has Glutant Intolerant Symptoms But Diagnosed Psychological.


  • Please log in to reply

39 replies to this topic

#1 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 01 February 2013 - 07:26 PM

My son came home from school one day feeling really yucky. He went straight to bed. He has since been out of school for two months. In the beginning he was sleeping alot like 12-14 hrs a day, stomach pain, joint pain in elbows and knees, muscle pain in legs, bad headaches and short tempered. We took him to see his pediatrician and they did a blood test, urine test and a sinus culture. They tested for mono, flu, lymes disease, Epstein Barr virus and everything came back negative. Brought him back the following week and they tested for autoimmune diseases and iron deficiency. Test came back negative for autoimmune and positive for iron deficient. He was put on 325 mg of iron. This helped so he is not sleeping as much but now has trouble falling to sleep. The pediatrician then referred us to a pediatric rheumatologist. They checked him out and said they saw no sign of swelling in his joints. They thought that it may have been a virus and that he will eventually feel better. In the meantime I spoke with the school and requested that my son have a tutor until he felt better. The school inturn requested a doctors excuse before they would agree. The pediatrician spoke with the school and said it may be viral but were leaning towards a psychological problem. The school then requested that my son be evaluated by a counselor before they would agree on any more ttutoring. So tomorrow we are off to see a counselor. This whole time I've been doing my own investigating by reading "what's eating my child" because i do not believe he has a psychological problem. Thanks to this book my son has been gluten free for about a week in hopes that this is the problem. No improvements yet. Anyone have a similar diagnosis? Any ideas on how to get his pediatrician to change her diagnosis?

  • 0

Celiac.com Sponsor:

#2 shadowicewolf

 
shadowicewolf

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,758 posts
 

Posted 01 February 2013 - 08:28 PM

Did you have them run the tests for celiac when he had all the other ones done?

Many of us have been told that its "all in our head", when in reality, it wasn't. I would push to find a new doctor for him to see.
  • 0

#3 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 01 February 2013 - 09:25 PM

If your son is celiac, and you want an official diagnosis for him, you will have to have him continue eating gluten for the testing to be accurate. The antibodies the tests look for start to disappear in the absence of gluten. Stomach pain, joint pain, migraines, irritability, iron deficiency.... all of these can be celiac and he should be tested for it before he goes gluten free, because to restart gluten later could make him very sick.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 02 February 2013 - 08:44 AM

Did you have them run the tests for celiac when he had all the other ones done?

Many of us have been told that its "all in our head", when in reality, it wasn't. I would push to find a new doctor for him to see.


No, at that time I hadn't yet reached out to my friends. My friends are the ones that suggested I checkout that book and told me it sounded like a gluten allergy.
  • 0

#5 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 02 February 2013 - 08:48 AM

If your son is celiac, and you want an official diagnosis for him, you will have to have him continue eating gluten for the testing to be accurate. The antibodies the tests look for start to disappear in the absence of gluten. Stomach pain, joint pain, migraines, irritability, iron deficiency.... all of these can be celiac and he should be tested for it before he goes gluten free, because to restart gluten later could make him very sick.


I probably should have him tested for celiacs instead of just going gluten free without a diagnosis. If I don't he will always be labeled by the pediatrician and school as psychological. I don't want that for him. Thank you for your input.
  • 1

#6 mommida

 
mommida

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,934 posts
 

Posted 02 February 2013 - 09:31 AM

When my son was 12 he had a virus that lasted all summer. Everytime I took him to the doctor he did have an ear infection (swimmer's ear)present too. Toward the end of the virus, the body trunk rash finally showed up. (The doctor had me really freaked out suggesting West Nile.) Looking back he did at one point have crazy red cheeks like someone had slapped him = Fifth's Disease (the last of the usual childhood virus list) That is probably the virus that hit him at a really bad time (growth spurt time) He was miserable and kept trying to get out to sport practice. In the evening the fever would spike (98 to 100 degrees) and he would vomit. This started the end of June and He started looking like himself again in October. (About the 2nd or 3rd week of October is when the rash finally showed up.)

Lyme disease testing is not always accurate, so I would get to a specialist for further testing for that. Testing for Celiac, needs a full panel and I would go for a Ped. Gastro. specialist.

From the tests run she showed have results of immune system blood cell elevations showing infection fighting?

I hope you have a reasonable counsler, that knows a sick child does not act like themselves and a doctor that doesn't have compassion for a sick patient would be dumb enough to say "It;s all in the head"
Really my kid willingly was playing football (bruises are "trophies" and proof you did your job blocking) and this virus and ear infection had him in tears with the pain.
  • 0
Michigan

#7 frieze

 
frieze

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,084 posts
 

Posted 02 February 2013 - 10:48 AM

My son came home from school one day feeling really yucky. He went straight to bed. He has since been out of school for two months. In the beginning he was sleeping alot like 12-14 hrs a day, stomach pain, joint pain in elbows and knees, muscle pain in legs, bad headaches and short tempered. We took him to see his pediatrician and they did a blood test, urine test and a sinus culture. They tested for mono, flu, lymes disease, Epstein Barr virus and everything came back negative. Brought him back the following week and they tested for autoimmune diseases and iron deficiency. Test came back negative for autoimmune and positive for iron deficient. He was put on 325 mg of iron. This helped so he is not sleeping as much but now has trouble falling to sleep. The pediatrician then referred us to a pediatric rheumatologist. They checked him out and said they saw no sign of swelling in his joints. They thought that it may have been a virus and that he will eventually feel better. In the meantime I spoke with the school and requested that my son have a tutor until he felt better. The school inturn requested a doctors excuse before they would agree. The pediatrician spoke with the school and said it may be viral but were leaning towards a psychological problem. The school then requested that my son be evaluated by a counselor before they would agree on any more ttutoring. So tomorrow we are off to see a counselor. This whole time I've been doing my own investigating by reading "what's eating my child" because i do not believe he has a psychological problem. Thanks to this book my son has been gluten free for about a week in hopes that this is the problem. No improvements yet. Anyone have a similar diagnosis? Any ideas on how to get his pediatrician to change her diagnosis?

Did the ped share with you that he/she thought it was psych? or did they only report that to the school? The second option would be totally unacceptable!
  • 0

#8 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 02 February 2013 - 09:48 PM

When my son was 12 he had a virus that lasted all summer. Everytime I took him to the doctor he did have an ear infection (swimmer's ear)present too. Toward the end of the virus, the body trunk rash finally showed up. (The doctor had me really freaked out suggesting West Nile.) Looking back he did at one point have crazy red cheeks like someone had slapped him = Fifth's Disease (the last of the usual childhood virus list) That is probably the virus that hit him at a really bad time (growth spurt time) He was miserable and kept trying to get out to sport practice. In the evening the fever would spike (98 to 100 degrees) and he would vomit. This started the end of June and He started looking like himself again in October. (About the 2nd or 3rd week of October is when the rash finally showed up.)

Lyme disease testing is not always accurate, so I would get to a specialist for further testing for that. Testing for Celiac, needs a full panel and I would go for a Ped. Gastro. specialist.

From the tests run she showed have results of immune system blood cell elevations showing infection fighting?

I hope you have a reasonable counsler, that knows a sick child does not act like themselves and a doctor that doesn't have compassion for a sick patient would be dumb enough to say "It;s all in the head"
Really my kid willingly was playing football (bruises are "trophies" and proof you did your job blocking) and this virus and ear infection had him in tears with the pain.


Good to know about the Lymes diisease testing. Our dog actually had a deer tick on him a few weeks before my son got really sick. As far as all the testing, the doctor never showed us the results. The nurse told us the results over the phone and all she said was that all the tests came back negative. I will ask that question when I call for a referral on Monday for a specialist.
The counselor seemed like she believed my son and understood our concerns. He sees her again on Saturday.
Thanks for your input.


  • 0

#9 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 02 February 2013 - 10:14 PM

Did the ped share with you that he/she thought it was psych? or did they only report that to the school? The second option would be totally unacceptable!


The nurse called and told us that my son should see a counselor. I spoke with the school nurse and she said that the doctor implied it was psychological. The doctor said she didn't exactly say that. Regardless that is how everyone is treating this. To top it all off I just found out from my daughter that my son isn't really seeing a tutor. He is actually in OSS (out of school suspension). Apparently the school is mad that my son has missed so much school so this is how he is being treated. My daughter was told this by the bus driver. He actually showed her the letter passed down from the school to not let my son ride the bus, even if he wanted to try and come back, because he is in OSS. I am so furious about this. Oh yeah one more thing....the school nurse called on Friday and spoke with my husband and told him that it is our responsibility to get our son to school even if we have to physically bring him in kicking and screaming. Isn't that nice. I'm sure the teachers would appreciate that. What a mess.......
  • 0

#10 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 03 February 2013 - 01:23 AM

What is going on with this school??? They have him on OSS - out of school suspension -- have told the bus driver he is not to ride the bus, have not informed you of the suspension or of the bus prohibition, but then the school nurse is telling you that you have to get your son to school kicking and screaming if necessary?? This does not compute. Why were you and your son not given notice of this suspension? Or the bus prohibition? For how long has he been (or not been) receiving this supposed tutoring? I don't think I have ever heard of such a mess. What right does the doctor have to discuss your son with the school and imply a psychological problem? NONE!!! That doctor needs to be pulled up right smart!! Like reported! And sued!

But first you need to go to the doctor's office and get a complete copy of all your son's medical records. Don't leave without them because they may try to alter them even - it has happened. I would go so far as to ask to look at them first before they go fiddle with them at the photocopier. Paranoid? Yes. But I have reviewed plenty of sets of altered medical records. :ph34r: And then take those records to some other doctor, preferably in another town, because of the "old boy" or in this case "old girl" network. They all back each other up. If the doctor "didn't exactly say" it was psychological, then why does everyone at the school think it was psychological. And the only time a doctor should ever discuss something like this is if the patient is perceived to be a threat to himself or others, which does not sound like your son. It sure sounds like she has violated his privacy. Although you may well feel this way yourself by the time you get done with this.

I am glad the counselor seems to have some common sense in this whole thing. Do you have to wait a whole week to see her again?

I don't think I have ever heard of such an appalling way to treat a child. How old is he? 12?? The poor little guy. I hope that gluten free helps him, that he gets to feeling better soon, that he gets a diagnosis and back to school where he belongs without a lot of hassle.

Sorry for the rant, but I am appalled. :blink:
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 mommida

 
mommida

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,934 posts
 

Posted 03 February 2013 - 07:17 AM

Have you discussed "homebound" student? This is when your student has medical issues attendance is not required. The student works from home. A teacher is does a home visit once a week with the school work.

I discussed this with the hospital counselor when my daughter had a rough year of hopsitalization and the later endoscopy procedures. She was just starting to miss too many days of school. In the end I now have my kids in Public Charter Cyber School. They have public school teachers on the computer, e-mails and phone calls for communication, and they stay home with a flexible schedule. Check your state to see if this is an option. Connections Academy has a tuition private school option and FREE public school in certain states.
  • 0
Michigan

#12 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,353 posts
 

Posted 03 February 2013 - 09:48 AM

Homeschooling might be a good idea... some time to deschool (regain interest in learning without authoritive/parental pressure) might make a big difference. I know many families who have gone this route. we homeschool too.
  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#13 frieze

 
frieze

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,084 posts
 

Posted 03 February 2013 - 10:11 AM

What is going on with this school??? They have him on OSS - out of school suspension -- have told the bus driver he is not to ride the bus, have not informed you of the suspension or of the bus prohibition, but then the school nurse is telling you that you have to get your son to school kicking and screaming if necessary?? This does not compute. Why were you and your son not given notice of this suspension? Or the bus prohibition? For how long has he been (or not been) receiving this supposed tutoring? I don't think I have ever heard of such a mess. What right does the doctor have to discuss your son with the school and imply a psychological problem? NONE!!! That doctor needs to be pulled up right smart!! Like reported! And sued!

But first you need to go to the doctor's office and get a complete copy of all your son's medical records. Don't leave without them because they may try to alter them even - it has happened. I would go so far as to ask to look at them first before they go fiddle with them at the photocopier. Paranoid? Yes. But I have reviewed plenty of sets of altered medical records. :ph34r: And then take those records to some other doctor, preferably in another town, because of the "old boy" or in this case "old girl" network. They all back each other up. If the doctor "didn't exactly say" it was psychological, then why does everyone at the school think it was psychological. And the only time a doctor should ever discuss something like this is if the patient is perceived to be a threat to himself or others, which does not sound like your son. It sure sounds like she has violated his privacy. Although you may well feel this way yourself by the time you get done with this.

I am glad the counselor seems to have some common sense in this whole thing. Do you have to wait a whole week to see her again?

I don't think I have ever heard of such an appalling way to treat a child. How old is he? 12?? The poor little guy. I hope that gluten free helps him, that he gets to feeling better soon, that he gets a diagnosis and back to school where he belongs without a lot of hassle.

Sorry for the rant, but I am appalled. :blink:

Your reply was more polite than I would manage being.....so i will simply agree!
  • 0

#14 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 03 February 2013 - 06:38 PM

Have you discussed "homebound" student? This is when your student has medical issues attendance is not required. The student works from home. A teacher is does a home visit once a week with the school work.

I discussed this with the hospital counselor when my daughter had a rough year of hopsitalization and the later endoscopy procedures. She was just starting to miss too many days of school. In the end I now have my kids in Public Charter Cyber School. They have public school teachers on the computer, e-mails and phone calls for communication, and they stay home with a flexible schedule. Check your state to see if this is an option. Connections Academy has a tuition private school option and FREE public school in certain states.


I will look into Homebound student. Homeschool/cyber school sounds like a good option but not sure if this would even work for my family. My husband and I both work full time. Thank you for the information.
  • 0

#15 Sunflower23

 
Sunflower23

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 03 February 2013 - 07:50 PM

What is going on with this school??? They have him on OSS - out of school suspension -- have told the bus driver he is not to ride the bus, have not informed you of the suspension or of the bus prohibition, but then the school nurse is telling you that you have to get your son to school kicking and screaming if necessary?? This does not compute. Why were you and your son not given notice of this suspension? Or the bus prohibition? For how long has he been (or not been) receiving this supposed tutoring? I don't think I have ever heard of such a mess. What right does the doctor have to discuss your son with the school and imply a psychological problem? NONE!!! That doctor needs to be pulled up right smart!! Like reported! And sued!

But first you need to go to the doctor's office and get a complete copy of all your son's medical records. Don't leave without them because they may try to alter them even - it has happened. I would go so far as to ask to look at them first before they go fiddle with them at the photocopier. Paranoid? Yes. But I have reviewed plenty of sets of altered medical records. :ph34r: And then take those records to some other doctor, preferably in another town, because of the "old boy" or in this case "old girl" network. They all back each other up. If the doctor "didn't exactly say" it was psychological, then why does everyone at the school think it was psychological. And the only time a doctor should ever discuss something like this is if the patient is perceived to be a threat to himself or others, which does not sound like your son. It sure sounds like she has violated his privacy. Although you may well feel this way yourself by the time you get done with this.

I am glad the counselor seems to have some common sense in this whole thing. Do you have to wait a whole week to see her again?

I don't think I have ever heard of such an appalling way to treat a child. How old is he? 12?? The poor little guy. I hope that gluten free helps him, that he gets to feeling better soon, that he gets a diagnosis and back to school where he belongs without a lot of hassle.

Sorry for the rant, but I am appalled. :blink:


My son received tutoring at the school for 2 hrs per day for one week. Then he tried to go back to school half days (the first three periods) but the nurse messed that up for him by not letting him call home to be picked up when not feeling well. Then Starting last friday he started tutoring again, at least that is what i was told by the nurse, but this time he is being bused to an on campus tutoring center. Which is full of high and middle school kids in OSS. Which is not one on one.
Unfortunately, at the beginning of every school year the school sends out letters to parents to have them sign off allowing the school to speak with doctors, picture rights, etc. Which of course I did.
Getting a copy of my sons records is a great idea. I will try and get out there this week. Thank you!
The counselor only works on Fridays and Saturday's.
This is all a nightmare. I just hope we find out whats wrong with my son.

  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: