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I Just Got..

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mouth Enthusiast
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Posted

Hi all my rock leader gave me this.. i bought it and its great.. It is called "A Guide through the Medicine Cabinet.. It lists most drugs-- the woman who compiled and wrote this book her husband was a pharmacist - the last update was 2006 and alot of the drug co's are starting not to give her help anymore-- but it is still great.. it lists everything brand generic and even some store brands in it, and then in the back is a directory of ALL drug companies and phone numbers.. it cost me $45.. and next year only the directory will be coming out of course at a lesser cost.. if anybody wants the info let me know and i will post it.. I don't want to get into trouble (again) for posting .. i did when i first started here.. now i dont have to freak out everytime i have to take my daughter to the dr and i can take the book with me and make a simple call b4 i leave the dr's office..

lynn

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2kids4me Contributor
2kids4me
Posted

That's great! The contact numbers will be of benefit because formulations change sometimes, it is nice to have abook to open up when drugs are prescribed.

Sandy

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi all my rock leader gave me this.. i bought it and its great.. It is called "A Guide through the Medicine Cabinet.. It lists most drugs-- the woman who compiled and wrote this book her husband was a pharmacist - the last update was 2006 and alot of the drug co's are starting not to give her help anymore-- but it is still great.. it lists everything brand generic and even some store brands in it, and then in the back is a directory of ALL drug companies and phone numbers.. it cost me $45.. and next year only the directory will be coming out of course at a lesser cost.. if anybody wants the info let me know and i will post it.. I don't want to get into trouble (again) for posting .. i did when i first started here.. now i dont have to freak out everytime i have to take my daughter to the dr and i can take the book with me and make a simple call b4 i leave the dr's office..

lynn

Perhaps if your really, really bored and have lots of time on your hands you could create a blog on the front page and list those numbers. :)

This was a great idea on your part but use caution when you bring it to the doctors with you, unless you really trust your doctors. There have been parents of celiac children whose doctors have thought that the parent was purposely making the child sick. This can really be a problem with kids who do not show up celiac under conventional tests. I may be a bit paranoid but trying to find out what was wrong with my DS when he was a baby almost got him taken away from me. He was finally diagnosed at 19 after years of misery. I wouldn't want them to think the same of you and I would check the scripts at home.

mouth Enthusiast
mouth
Posted
  • Author
Perhaps if your really, really bored and have lots of time on your hands you could create a blog on the front page and list those numbers. :)

This was a great idea on your part but use caution when you bring it to the doctors with you, unless you really trust your doctors. There have been parents of celiac children whose doctors have thought that the parent was purposely making the child sick. This can really be a problem with kids who do not show up celiac under conventional tests. I may be a bit paranoid but trying to find out what was wrong with my DS when he was a baby almost got him taken away from me. He was finally diagnosed at 19 after years of misery. I wouldn't want them to think the same of you and I would check the scripts at home.

No worries here. Have know my peds. Dr. for more than 30 years. he did think something of the sort when my kate was young, because i would bring her in and he'd give her something and she wouldnt get better, get worse, bring her back, get worse bring her back etc, then finally something would show up that could be treated with meds.. then we started with the specialists and he never questioned anything again.. but he had not seen me since i was 17, and he was not her orig. dr either.. he old dr's never forwarded her records in completion..

mouth Enthusiast
mouth
Posted
  • Author
Perhaps if your really, really bored and have lots of time on your hands you could create a blog on the front page and list those numbers. :)

This was a great idea on your part but use caution when you bring it to the doctors with you, unless you really trust your doctors. There have been parents of celiac children whose doctors have thought that the parent was purposely making the child sick. This can really be a problem with kids who do not show up celiac under conventional tests. I may be a bit paranoid but trying to find out what was wrong with my DS when he was a baby almost got him taken away from me. He was finally diagnosed at 19 after years of misery. I wouldn't want them to think the same of you and I would check the scripts at home.

No worries here. Have know my peds. Dr. for more than 30 years. he did think something of the sort when my kate was young, because i would bring her in and he'd give her something and she wouldnt get better, get worse, bring her back, get worse bring her back etc, then finally something would show up that could be treated with meds.. then we started with the specialists and he never questioned anything again.. but he had not seen me since i was 17, and he was not her orig. dr either.. he old dr's never forwarded her records in completion..

Also, i brought the book to my pharmacist, and he said "This is wonderful" it will go a long way in helping to make sure the meds are ok. He had a similar book made for pharma's but a whole lot bigger, and I HATE THIS PART-- he is the mgr of my pharma. and his boss came in from HQ when he was on vacation and thought HIS MEDS/MANUF. book looked like a mess and threw it ouT !!!!!!!!!!!!!!!!! HE WAS SO MAD-- HE WAS HELPING TO CREATE A SAFE LIST FOR ME AND MY PEDS, AND FOR I.C.E...

NO, BECAUSE, WHEN THE PEDS PRESCRIBES I OR HE CAN CALL THE PHARMA, SEE WHAT GENERIC THEY HAVE AND CALL THE CO RIGHT THERE AND THEN IF WE NEED TO DOUBLE CHECK.. NO SENSE IN WASTING TIME.. ... THEY BOTH AGREED.

THANK YOU SO MUCH FOR YOUR HELP THOUGH..

LYNN

mouth Enthusiast
mouth
Posted
  • Author
That's great! The contact numbers will be of benefit because formulations change sometimes, it is nice to have a book to open up when drugs are prescribed.

Sandy

HEY SANDY.

That is the idea.. and it is great FOR I.C.E. -- JUST BRING IT WITH YOU....

mouth Enthusiast
mouth
Posted
  • Author
No worries here. Have know my peds. Dr. for more than 30 years. he did think something of the sort when my kate was young, because i would bring her in and he'd give her something and she wouldnt get better, get worse, bring her back, get worse bring her back etc, then finally something would show up that could be treated with meds.. then we started with the specialists and he never questioned anything again.. but he had not seen me since i was 17, and he was not her orig. dr either.. he old dr's never forwarded her records in completion..

I would not even begin to know which drug manufacturers to list.. there are page upon pages..

if you want any specific, email me and i will look them up for you.

BTW, the same woman, also makes a DIRECTORY-- it is just a list of all the manufacturers and their phone numbers.

lynn

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    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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