Medical Records

[beth01]

Has anyone else read a complete copy of their medical records?  I received my medical records from birth until age 26.  I find them rather disturbing.  Note after note from multiple doctors complaining of the same symptoms time and time again.  Reading doctors state " I can't find a reasonable explanation for reoccurring symptoms" or after taking medical history at every Neuro appointment to have stated in my chart " other review of systems is noncontributory" meaning I was just there for my headaches and the doctor didn't believe my other symptoms had anything to do with the other.  My mother complaining time and time again about nausea and vomiting and an inconsolable child from the time I started solid foods.  Almost every appointment since there is a mention of nausea, vomiting and diarrhea/constipation. Then came the joint and back/neck/shoulder pain, unexplained muscle weakness, rashes, swelling of the face, memory loss, problems speaking.  Again, over and over. And I have only read until age 18.

 

After my diagnosis two and a half months ago I was full of rage knowing that all these years I wasn't crazy, the doctors never put two and two together.  This minute is so much worse!  I knew they messed up, but to have it all in black in white right in front of me, OMG. TWO HUNDRED AND THIRTY SEVEN pages of utter bulls$#&.  And this is only until age 26 and one hospital, I still have 3 more hospitals sending me records and 11 more years of the same crap.  I think I need a drink or to slap somebody.  How could all of this not be negligence?  What's more frustrating is I know I am not the only one that has had to go through this and all the people still out there that are going through it.  How frustrating. 

[BethM55]

You have every right to be angry.  As a nurse specializing in child health/school health, I have often told parents to listen to their children, and doctors to listen to their patients and to their patients' parents, because the parents know their kids.  Doctors don't like problems that can't be found on lab tests, or are off the mainstream of usual ills and presenting problems.  

 

As someone who has NCGS (self diagnosed because the docs wouldn't listen to me) and fibromyalgia, I understand your frustration.  It shouldn't take a lifetime to figure out that the symptoms you presented as a child ARE NOT NORMAL.  How many kids live in misery because the food they eat is poisoning them?  None should.  Hopefully, with the current attention and research on celiac disease and on fibromyalgia, fewer children and adults will have to suffer as long as you did.

 

I believe that it's time for a long, hard look at what we eat and how it's grown and processed.  GMO foods are a huge problem, but that's another topic.

 

Peace.

[beth01]

What really makes me mad is thinking about just how many people are out there walking around with the wrong diagnosis.  How many people are there who have been clinically depressed, had anxiety, ADHD, OCD, P.O.T.S, IBS, Fibromyalgia, chronic migraines and the mile long list we have all been misdiagnosed with are out there walking around in a fog and could be feeling so much better? It's frustrating and will probably get even more frustrating once I get the rest of my records. But, at least I will be more properly prepared the next time I start reading.  I will know what to expect.

 

 

Beth- I am really glad that there are school nurses like you.  My daughter was having some problems with fainting for the last year and the school pretty much blew her off as faking it.  When we finally got a diagnosis of Celiac for her, I called the school to let them know.  I asked the nurse about sending home a note for the parents to please call me if they were going to be sending treats with their kids so I could be properly prepared to have something for my daughter to eat so she doesn't feel left out. She told me she would talk to the office staff and get back to me.  When she called me back, she told me " I have discussed this with the office staff and the principal and since we figure parents aren't going to remember to call, we don't feel it's necessary".  I was floored and rather upset.  Needless to say I wasn't very nice to her on the phone after that or nice to the principal that I spoke with after her.  It's frustrating when people have blinders on and only have tunnel vision.

[BethM55]

What really makes me mad is thinking about just how many people are out there walking around with the wrong diagnosis.  How many people are there who have been clinically depressed, had anxiety, ADHD, OCD, P.O.T.S, IBS, Fibromyalgia, chronic migraines and the mile long list we have all been misdiagnosed with are out there walking around in a fog and could be feeling so much better? It's frustrating and will probably get even more frustrating once I get the rest of my records. But, at least I will be more properly prepared the next time I start reading.  I will know what to expect.

 

 

Beth- I am really glad that there are school nurses like you.  My daughter was having some problems with fainting for the last year and the school pretty much blew her off as faking it.  When we finally got a diagnosis of Celiac for her, I called the school to let them know.  I asked the nurse about sending home a note for the parents to please call me if they were going to be sending treats with their kids so I could be properly prepared to have something for my daughter to eat so she doesn't feel left out. She told me she would talk to the office staff and get back to me.  When she called me back, she told me " I have discussed this with the office staff and the principal and since we figure parents aren't going to remember to call, we don't feel it's necessary".  I was floored and rather upset.  Needless to say I wasn't very nice to her on the phone after that or nice to the principal that I spoke with after her.  It's frustrating when people have blinders on and only have tunnel vision.

Beth, I'm not sure about the laws in other states, but in California, if your child has a medical condition that requires accomodations at school you can request a meeting to develop a '504 Plan', for "other health impaired".  If you bring in medical orders from your daughter's doctor, those must be included and accomodated to the greatest extent possible.  Since gluten has a negative affect on her health, you have a right to know when there will be a possibility of gluten exposure at school.  Or, her classroom can be made a gluten free zone, as is done with peanut free zones for children with peanut allergy.  Talk to her teacher about notifying you if parents are bringing snacks or treats. You can also leave gluten free treats with the teacher so that if cupcakes or other gluten filled foods are brought in, your daughter can have a treat also and not feel left out.  (I suspect her treat will be tastier than whatever is brought, too!)  

 

I'm assuming your child is elementary age (K-6)?  It gets a bit tougher at middle school, when peer pressure is a strong influence.  

 

BTW, if vomiting is one of your daughter's gluten reactions, she could go vomit on the principal's shoes...  (did I just say that???  lol!)  

[1desperateladysaved]

It is frustrating to have this happen.  I try not to hold my misdiagnosis against anyone.  Doctors can only do what they are trained to do.  Mothers/doctors can't always feel the pain that the child feels.  Some children do make up symptoms for attention or to get out of things.  It is hard for parents (I have 5 children) and I am pretty sure it is hard for doctors too.  Many people go undiagnosed with this disease.  I would try to concentrate on the Joy that you figured it out!  You can help friends and your family. Now you can make a difference for yourself by changing your diet.  You might grieve for last years for a while, but next you need to get up and walk in the right direction.  You will get better.  I suffered 30 Plus years of symptoms, but I left my brain fog and fatigue behind and feel better now!  I can't wait to hear a similar story from you.

 

Dee

[NatureChick]

I think many of us have the same frustrations. Considering how many people have had to diagnose themselves and get doctors to confirm is clear evidence that many in the medical industry still don't know enough about celiac to help their patients. I look at my family, especially the generation before mine, and can clearly see the damage that gluten has done simply because connections were never made, and I am just grateful that I might have dodged the bullets.

But I think I might recommend taking a step back, away from the medical records. The first few months of being gluten-free are already tough enough without dredging up the past as well. At some point, ask yourself if reliving the past is helping your future. I'm sure there are some lessons to be learned, but the anger isn't going to help your recovery. 

But on a more positive note, at least you have hundreds of pages of reasons not to be tempted to eat gluten ever again. And you now know how to take charge of your own health and are no longer reliant on doctors.

And though it may take a while to get past the point where your every waking thought seems to be related to gluten, you will get back to the point where it doesn't consume your life (pun intended). Having celiac doesn't have to define who you are, just what you eat.

[dilettantesteph]

Beth, I'm not sure about the laws in other states, but in California, if your child has a medical condition that requires accomodations at school you can request a meeting to develop a '504 Plan', for "other health impaired".  If you bring in medical orders from your daughter's doctor, those must be included and accomodated to the greatest extent possible.  Since gluten has a negative affect on her health, you have a right to know when there will be a possibility of gluten exposure at school.  Or, her classroom can be made a gluten free zone, as is done with peanut free zones for children with peanut allergy.  Talk to her teacher about notifying you if parents are bringing snacks or treats. You can also leave gluten free treats with the teacher so that if cupcakes or other gluten filled foods are brought in, your daughter can have a treat also and not feel left out.  (I suspect her treat will be tastier than whatever is brought, too!)  

 

I'm assuming your child is elementary age (K-6)?  It gets a bit tougher at middle school, when peer pressure is a strong influence.  

 

BTW, if vomiting is one of your daughter's gluten reactions, she could go vomit on the principal's shoes...  (did I just say that???  lol!)  

 

My son's doctor told him to vomit on the teacher.  The school decided that the vomiting was school phobia rather than celiac disease.  I don't know how they had the medical training to overrule the doctor, but that's what happened.  The district physician talks to the doctor and then makes the decision on how the child is to be accomodated or not.  Fortunately he graduated from that school the same year.

[CathyO]

I was diagnosed this year with Celiac Disease.  I am 60 years old this year.
I spent most of my life with one thing after another -- all of them on the list of "things related to Celiac Disease".
I could spend a lot of energy being angry at going undiagnosed for so long, and for all I've been through.

I'm choosing to be grateful I finally have a diagnosis, and now I can change my way of eating and thinking about food and focus on being healthy and enjoying every day to its fullest.

 

Regarding the child's issues with the school, perhaps a conversation with the superintendent of schools in your district is called for ... and taking it UP the ladder from there. I'm pretty sure the Americans with Disabilities Act (ADA) provides for a safe learning environment for every child.

We are raising a grandchild, and his classroom in elementary school was both a "gluten free" and a "peanut free" zone.

He was not allowed to bring gluten or peanut containing items for birthdays.  His classroom had students with health issues.

 

It sounds like your school is violating more than one law by not making accommodations for the child's health issue.

[BethM55]

My son's doctor told him to vomit on the teacher.  The school decided that the vomiting was school phobia rather than celiac disease.  I don't know how they had the medical training to overrule the doctor, but that's what happened.  The district physician talks to the doctor and then makes the decision on how the child is to be accomodated or not.  Fortunately he graduated from that school the same year.

I like the way your son's doctor thinks!  However, I don't approve that the district physician was able to overrule your son's doc.  The needs of the child come FIRST.  And an established diagnosis supercedes the opinion of the district doc.  At least IMHO.  Makes me very angry when the needs of the child are not met at school because the administration thinks it knows best.  

 

Where do you live?  I'm just curious which state...

[gilligan]

Beth, I'm not sure about the laws in other states, but in California, if your child has a medical condition that requires accomodations at school you can request a meeting to develop a '504 Plan', for "other health impaired".  If you bring in medical orders from your daughter's doctor, those must be included and accomodated to the greatest extent possible.  Since gluten has a negative affect on her health, you have a right to know when there will be a possibility of gluten exposure at school.  Or, her classroom can be made a gluten free zone, as is done with peanut free zones for children with peanut allergy.  Talk to her teacher about notifying you if parents are bringing snacks or treats. You can also leave gluten free treats with the teacher so that if cupcakes or other gluten filled foods are brought in, your daughter can have a treat also and not feel left out.  (I suspect her treat will be tastier than whatever is brought, too!)  

 

I'm assuming your child is elementary age (K-6)?  It gets a bit tougher at middle school, when peer pressure is a strong influence.  

 

BTW, if vomiting is one of your daughter's gluten reactions, she could go vomit on the principal's shoes...  (did I just say that???  lol!)  

Yes, it is the same in many other states.  I am a teacher, also.  At the beginning of the school year, we are given a confidential health list, and it is up to us to make sure we know how to handle each child's health related need.  I have had several students with peanut and egg allergies, and one that had celiac a few years ago.  That was the first time I ever heard the word celiac.  I was directed by administration to set up a meeting with the parents of this student, but the parents had already scheduled a meeting with me. A letter went home to parents notifying them that I had a child with celiac, peanut allergy, etc. and that all treats brought into the classroom had to be approved ahead of time.  It was up to me to contact the health impaired student's parents to be assured that it was okay to bring said treat into the classroom. For my student with celiac, it was really easy.  Mom brought a couple of bags of her favorite candy bars in and we put them in the freezer for her to have on hand.  My student with the egg allergy had a mom that could duplicate almost anything.  She kept things ready made in the freezer at home and could decorate like a pro to match what was being brought in.  

[dilettantesteph]

I live in NY state.  I have talked with the superintendent of schools as well as disability lawyers.  The way they do it in my district is that you must sign permission for the district doctor to talk to your child's doctor to obtain a 504.  Then the district doctor and administrators decide on what accomodations need to be made.  The principal and school physician didn't even think that a crumb free work area was necessary.  I had to push hard for my son to not be required to have lunch in the cafeteria, which was making him sick.  My son's doctor has had problems with getting instructions misinterpreted in the past.  In fact, she said that this particular school physician has said that she had said outradgeous things.   If you disagree with the accomodations that have been determined there is a formal process to go through.  All this takes many months. 

 

I know someone who went through problems with 504 accomodations in California with a high functioning autistic child.  He recorded all the school meetings, and kept records of all transactions.  In the end his child is in a private school and the district had to pay some of the cost after he took them to court.

 

I think that school districts don't feel like they have the necessary funding to do what is needed.  The system is set up in a way that assumes that the district is acting to serve the student.  I am glad to read that the majority of students seem to be well accomodated.  I hope that my school district makes some improvements.

[BethM55]

I live in NY state.  I have talked with the superintendent of schools as well as disability lawyers.  The way they do it in my district is that you must sign permission for the district doctor to talk to your child's doctor to obtain a 504.  Then the district doctor and administrators decide on what accomodations need to be made.  The principal and school physician didn't even think that a crumb free work area was necessary.  I had to push hard for my son to not be required to have lunch in the cafeteria, which was making him sick.  My son's doctor has had problems with getting instructions misinterpreted in the past.  In fact, she said that this particular school physician has said that she had said outradgeous things.   If you disagree with the accomodations that have been determined there is a formal process to go through.  All this takes many months. 

 

I know someone who went through problems with 504 accomodations in California with a high functioning autistic child.  He recorded all the school meetings, and kept records of all transactions.  In the end his child is in a private school and the district had to pay some of the cost after he took them to court.

 

I think that school districts don't feel like they have the necessary funding to do what is needed.  The system is set up in a way that assumes that the district is acting to serve the student.  I am glad to read that the majority of students seem to be well accomodated.  I hope that my school district makes some improvements.

I'm so sorry that your son's health has to be compromised because of bureacratic nonsense.  I hope this can be worked out for his best well being.  Sounds like that district physician needs to be replaced with someone who has some real medical knowledge and compassion for the health of the children.

[beth01]

See, I don't know what to think about all this school stuff.  We are fine sending lunch to school with her, we aren't worried about that.  Would I have to go through all that just to have a note sent home about the treats?  I am going to take some frozen snacks for her to have on hand, but I know it's nice and means an awful lot to her when parents go the extra mile and make sure they send something for her.  My daughter was overjoyed when one of her friends mom sent a gluten free prepackaged treat for her.  I was too.  That was the point I was trying to make to the school, I know most parents aren't going to remember but it's the few that do that count.

[BethM55]

See, I don't know what to think about all this school stuff.  We are fine sending lunch to school with her, we aren't worried about that.  Would I have to go through all that just to have a note sent home about the treats?  I am going to take some frozen snacks for her to have on hand, but I know it's nice and means an awful lot to her when parents go the extra mile and make sure they send something for her.  My daughter was overjoyed when one of her friends mom sent a gluten free prepackaged treat for her.  I was too.  That was the point I was trying to make to the school, I know most parents aren't going to remember but it's the few that do that count.

Is your daughter old enough to know to avoid gluten containing food, and to know which foods are problems?  Not to share food with other kids?  If you can work only with the teacher, that could be enough, especially since the nurse and the administration have essentially said 'not my problem'.  If the teacher is willing, keep a supply of safe snacks for your daughter at school for classroom parties, as you mentioned.  Probably the only reason to deal further with admin would be if she needs a gluten free table at lunch, or other such accomodations.  

 

How lovely that the friend's mom sent a gluten-free treat for you daughter!  That's the sort of support you and she need.  

[dilettantesteph]

See, I don't know what to think about all this school stuff.  We are fine sending lunch to school with her, we aren't worried about that.  Would I have to go through all that just to have a note sent home about the treats?  I am going to take some frozen snacks for her to have on hand, but I know it's nice and means an awful lot to her when parents go the extra mile and make sure they send something for her.  My daughter was overjoyed when one of her friends mom sent a gluten free prepackaged treat for her.  I was too.  That was the point I was trying to make to the school, I know most parents aren't going to remember but it's the few that do that count.

 

I don't think that a 504 plan would likely require a note sent home about the treats.  That probably depends on the individual teachers.  In my experience most are great and only a few aren't.  Most e-mailed me about what would be safe and were going to purchase treats for him themselves to have on hand in the classroom for such occasions.  We provided our own.  Teachers get paid little enough for their efforts.  It was only a couple of administrators that caused us problems.