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Joyous

Have You Ever Gone Back To A Dr. Who Was Wrong...

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Have you ever gone back to a dr. who was wrong (or perhaps was right but didn't think to suggest Celiac Disease as a cause) for the purpose of telling him/her what was actually wrong? (I'm considering doing this with, or at least writing letters to, a few of them once my symptoms clear up. Of course, I won't say "you were wrong", I'll just tell them that the underlying cause of the condition they saw me for turned out to be Celiac Disease.)


Joy

Not gluten free yet because I'm waiting to be tested.

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I'd been considering writing a letter to my past doctors (especially the ones who shot me down when I suggested celiac disease), but a friend who works in a medical practice says that the docs get letters like that all the time and they usually just throw them away without even reading them.

I know a librarian who works for one of the local hospitals, so I've been thinking about talking to her about the best ways to get celiac info to the doctors. Maybe she and I can collaborate and put something together to be distributed to all their docs.

I work in a community college that has a very good nursing program and I've been thinking about talking to instructors about getting mentions of celiac into their courses, e.g. make sure the gluten-free diet is mentioned in the nutrition class. We have a culinary program that's still in the early stages, but I'd like to get some info in there too.

Kate


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Celiac symptoms since 1985 (gluten-free since 9/2/07)

Vitiligo since 1991

Environmental allergies since 1992

Polycystic Ovary Disease since 1993

HLA DQA 1*05 (DQ5)

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I have fantasized about it.... :rolleyes: No, I wouldn't because I'm having a hard enough time educating the dr taking care of me :rolleyes:;) right now. My friend is a nurse and she works with the hematologist who said to me, "You do not have any type of malabsorption disorder." She told him that, in fact, it turned out I did. His response? "Oh, really." Good luck if you decide to do this. If you made ONE take a harder look at his patients, it would be worth it!

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Yes, I did. I have no choice, as here in Ontario we have a severe doctor shortage, and nobody takes new patients. If I drop my family doctor, I'd be unable to see any specialists, as they won't see you without a referral from a family doctor (I've tried when my last doctor moved to the States, and I was very fortunate to then be able to get the doctor I have now within a year).

It is better to have an ignorant doctor, than not having one at all and being at the mercy of whoever is on call in the walk-in clinic in the hospital. Because she is still better than some of the quacks in our area (I say that at least 75% here fall within that category, from what I've heard and seen, as well as encountered when I went to the hospital emergency - a waste of time).

My doctor is a nice woman, I like her. Unfortunately, she doesn't know what she is doing as a doctor most of the time. I have educated her to some degree when it comes to celiac disease, and may have helped others.

On the other hand, she frustrates me to no end when it comes to my other issues (possibly hypo-pituitary, causing the thyroid and adrenal glands to nearly shut down, and very likely not producing any growth hormone), as she has no clue about those. And neither does the specialist she finally sent me to.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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I think that is a good thing to do maybe they would just learn from there mistakes before it leads to death. Write a letter and send it so they will have to sign for it that way it sounds very important, are go to there office and hand deliver it and ask for a responce.

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Have you ever gone back to a dr. who was wrong (or perhaps was right but didn't think to suggest Celiac Disease as a cause) for the purpose of telling him/her what was actually wrong? (I'm considering doing this with, or at least writing letters to, a few of them once my symptoms clear up. Of course, I won't say "you were wrong", I'll just tell them that the underlying cause of the condition they saw me for turned out to be Celiac Disease.)

Yes I have! And the funny thing was the Dr. that found it works in the same office as the Dr. who just thought I was crazy! On the other hand I

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I think it's worth letting the doctor know, just don't blame him. My mom had gotten really sick a couple of years ago so I took her to the doctor, I asked him to check her for celiac, although her symptoms were not the same as mine, and he poo=pooed me, but did the blood test. I told him I had been diagnosed by both blood and biopsy, he said he didn't really believe in celiac, anyway long story short he took the blood along with checking for deadly diseases and when we went back 2 weeks later her blood work had come back highly positive and he had educated himself on the disease. My brother also went to the doctor and the doctor asked why would you want to go on such an awful diet if you aren't sick, Anyway, after my mom was diagnosed he went in for testing, his villi was gone, it had started affecting his bones, all without any symptoms. So, if it helps one person it's worth telling him in my opinion.


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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I've thought about it, even fantasized about writing some of the doctors who treated me like a hypochondriac that I was finally diagnosed with a wheat allergy by a prestigious hospital. But the truth is the ones I really want to educate are the arrogant ones who will dismiss it anyway.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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As long as you do it politely and constructively, I think it's a really good idea. Here's a story to encourage you.

My husband's cousin has a son who is autistic. His mom couldn't potty train him when he was 4 or 5. She kept telling the docs there was something wrong with him. Apparently his poop was REALLY strange.

So, she did a bunch of research and decided to pull gluten and dairy from his diet. The pediatrician told her that she would be 'torturing him.'

She said, "Will it hurt him?"

He said, "No."

Within the first weekend of pulling the dairy, he was potty trained. And the pulling the gluten helped with a lot of the behavioral stuff.

At the next annual visit, the kid was clearly doing GREAT sans gluten and dairy (and some other stuff) the ped said "Boy was I wrong about this! I'm so glad you didn't listen to me." and now he uses her as a resource for a lot of things.

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