Proper info from your Doctor in handling CD

aklap · Joined: 02 Oct 2004 Posts: 10972 Location: WI, USA

This is starting to be pet project of mine lately. I'm not trying to pick on the medical community...I just want the patients to have at least some basic info on how to handle the day to day stuff. Like this board does now...

So I'd like to know... If you felt you were given enough info make it day to day and what you were given as info sheets

So - place your vote and then post what type of info you were given.

Thanks for participating!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Deb · Posted: Mon May 16, 2005 5:33 am Post subject:

To be quite truthful Al--the doctors dont have a clue--my sis is a dietician and she says that doctors get very little training in diet of any kind--they greatly depend on the dietician to explain diet to a patient--she is the one who talks to new celiacs about the diet and are they ever lucky to have her teaching them--together there is hardly a guestion we have not thought of and researched and what we dont know--I ask you--I have told her if you dont know, you will find out--thanks Al----Deb

aklap · Joined: 02 Oct 2004 Posts: 10972 Location: WI, USA

ccwright@comcast.net · Guest

Hi Al,

I got nothing at all from the doctor. They told me to go research the internet for help. If it wasn't for this group I would've been in a complete panic.

On a lighter note, I have been adjusting very well (since my rocky start). I must be eating right because I haven't had any major episodes lately. Also, my headaches have all but stopped completely... Praise God! My husband is quite the cook so he's taken it upon himself to be my own personal "gluten-free chef". Hey, this might not be so bad after all! Very Happy

Take care,
Chris

Al · Guest

Chris,

That's really great you are doing so well!! Maybe you need to get your hubby out here too Very Happy

I am glad that I like to cook (I do about 40-50% of it), it has been a fun challenge. I think I'd be in a world of hurt if I didn't like cooking. Thankfully my wife is a great cook and even a better baker!!

Take care, keep up the good work!

Al

Kristie · Joined: 03 May 2005 Posts: 89

Sadly, the doctors were no help to my son, or to me in my hopes to help him. Now, the internet on the other hand.... has been a true blessing, and bill free might I add Wink

maria1223 · Guest

I agree with all of you that the Dr's don't have enough knowledge about celiac. they tell you to go see a dietition & some of them don't know about it either the first one that I had just wanted me to gain weight. the 2 nd one knew everything by than I had just played around til I learned to cook for a celiac. And I'm glad I like to cook too so it makes it much easier. theses Dr's need to be updated on celiac & what things can happen to your body when you have it.

Guest · Posted: Mon May 16, 2005 5:44 pm Post subject:

The Dr called me and told me that my blood tests stated I had Celiac but didn't explain any further. I was on vacation at the time so until I started researching what it was, I continued eating all the wrong foods until I found sites like this one to help me sort everything out. The dietician helped me out with my diet and I am grateful that she could point me in the right direction.

Emma · Guest

I am not sure how this is done and I appologise if this is wrong. I have not actually been dx'd as yet. Celiac runs in my family. I am having a really hard time with setting up my menu's etc. i am actually plump, so gaining weight is not an issue. I have suspected for some time that I have celiac disease,but was not willing to change. it is just now I am ready to take responsibilty to change my lifestyle. I have been off Gluten "stuff" for going on two weeks. I feel 45% better, but still have away to go

any suggestions as to how to approach my doctor with my suspicions?

Emma

beckyhiker · Joined: 25 Feb 2005 Posts: 88 Location: New York

I too received a phone call from my dr one night with the diagnosis and her information consisted of "go look on-line at the CSACeliacs site". I was never offered a chance to see a dietician either, so I've been completely on my own. I can't quite believe that this is professional behavior on the part of a dr; imagine if dr's did this with diabetes or heart problems?! But then again, they can easily give you drugs for those things!

As others have said before me, that goodness for the internet and this forum!!!! Very Happy

Becky

luvscowznh · Joined: 23 Dec 2004 Posts: 423 Location: Groton, MA

Once I finally got the diagnosis of CD - my Dr told me to keep on an Atkins-like diet - no carbs. It was only after doing A LOT of research on my own - including reading posts from this site - that I found out what things I should and shouldn't eat. I don't recall being given ANY literature about what kinds of things I could and could not eat. It might have been helpful if I had been referred to a dietician or a nutritionist.
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strawdog · Joined: 12 Feb 2005 Posts: 24 Location: Omaha, NE

I never got a full diagnosis, but the doctor gave me a printout from a website and asked me to try a gluten free diet to see if I felt better on it. The printout was not exactly that helpful, as I seem to remember it excluded all vinegars and alcohol, and only broke foods down into "acceptable" "not acceptable" and "questionable" categories without telling me why something was questionable or what to question about it.

Shanon · Guest

I was called with the results of my EGD and blood tests. The nurse said that I should make an appt. right away and transfered the call to scheduling with a heads up on what was going on. The best they could do was 4 months out! I haven't heard from them since and the appt isn't until July.
Luckily, that was just my Heptologist!

I stopped by my Gastro Dr.'s office the next day and asked the receptionist for info. She had a file drawer filled with info on various diseases ready to hand out to people and then said to call if I had any questions.

The info was pretty good but of course the internet has been better!

falwell57 · Guest

I too, wasn't given much 3 months ago - a 1 pg. sheet with the "bare" basics from the gastro. here at home who did my biopsy. She had also not picked up on it 2 years ago when she did a liver biopsy from Hep C. (because I didn't have the diarrhea and drastic weight loss.) CD was initially suspected when I checked myself into Mayo Clinic in FL, after 40 years of trouble. They hit on it right away, and then with a positive EMA, after seeing all my history - Grave's disease/thyroidectomy in 1972, major osteoporosis, erosive osteoarthritis, plantar fasciitis/surgery in both feet, hysterectomy from severe anemia, peripheral neuropathy, 6 years of vomiting daily (attributed to stress - duh!!), low iron, calcium, protein, albumin, B-12, etc. I now have lots of damage to try and fix/deal with. Both my girls are very possibly celiacs too. They will be tested this summer. I called Wild Oats and they gave me the name of the local moderator of the support group. She gave me lots to start with, including lots of personal info. which I could sure relate to. But I could not have done without my internet "friends" and fellow "sillyaks." It's sad that the doctors/labs get all the money from regular bloodchecks, etc., when all the work to eat/cook/stay healthy and stay "deglutened" is done by the celiacs themselves. Just my thoughts on staying "clean" - one day at a time!

momma3love · Joined: 26 Feb 2005 Posts: 19 Location: Oregon

I was given no info what so ever. I was told to buy some books. And most of the time I still find myself accidently eating gluten. I did not like the doc that dxed me at all. This site has been a huge lifesaver for me. Without all your unbelievable info who knows where I would still be.

Great poll Al.
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Hugs and healing thoughts to all,
Carrie