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Debby

Need Help With School Project

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My daughter is doing a school project on Celiac and I was wondering if

a few people would help her out and just answer a question for her.

"I'm a student doing a report on Celiac and I am trying to emphasize

how common the disease is as well as encourage the public to become

more aware of it. For part of my project I am inquiring on how much

money in doctor bills people have spent before being diagnosed.

(including what insurance paid) Thank you for any help your can give

me" Kim

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I can't give you an exact amount, but I have been in many emergency rooms as a child with abdominal pain. As a young adult I had years of health problems and lables of bulemia and IBS (neither were correct). Throw in a couple of surgeries "to look around". Then I finally started getting really sick. My undiagnosed illness affected my new baby too. She's ok in the end. I finally lost a gallbladder and an appendix and got a diagnosis of Celiacs. Now I am much healthier. In total I would guess around $7K to $10K for my costs on surgeries, medications, lab work, etc. How much it ran without insurance I don't know.

For my toddler, the meds, lab work, and testing has run around 3K and she still does not have an "official" diagnosis. She responded really well to the diet after an inconclusive biopsy for Celiacs.

Hope the school project turns out well. Post the results :)

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gfgypsyqueen

Is it possible to get a first name. I am required to have a name.

You can email it to

debbierb at hotmail

Thanks

Kim

I can't give you an exact amount, but I have been in many emergency rooms as a child with abdominal pain. As a young adult I had years of health problems and lables of bulemia and IBS (neither were correct). Throw in a couple of surgeries "to look around". Then I finally started getting really sick. My undiagnosed illness affected my new baby too. She's ok in the end. I finally lost a gallbladder and an appendix and got a diagnosis of Celiacs. Now I am much healthier. In total I would guess around $7K to $10K for my costs on surgeries, medications, lab work, etc. How much it ran without insurance I don't know.

For my toddler, the meds, lab work, and testing has run around 3K and she still does not have an "official" diagnosis. She responded really well to the diet after an inconclusive biopsy for Celiacs.

Hope the school project turns out well. Post the results :)

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I would say I probably spent around $4,000 before I gave up on doctors and diagnosed myself because they refused to believe anything was wrong with me. My first name is Ezme. Good luck with the project. Tomorrow is our last day of school! :D

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Never diagnosed officially with celiac, but over the past two years between me and insurance it adds up to about $13,000. I remember adding up a few years ago what it was up to and that came to about $20,000 so over $30,000 total when it's all said and done and that's probably conservative. My problems started in 1999 so that's about 9 years. Never had a biopsy so they can't say celiac, but do agree I have a problem with gluten.

Thankfully we have really good insurance, but I also spent alot of money out of pocket to see other Drs. that weren't covered by insurance. I know at least another $5000 on that and probably closer to $10,000.

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Michael - spent about $7000 medical bills in a 30-year span; this does not include the free medical attention he received from the Veteran's Hospital (couldn't be much because they refused to give him medical testing - so if I had to put a price on it it ran about $600 in 1977 - some of these costs are before healthcare costs skyrocketed so they may seem low by today's standards, but iin 1977 I think an average annual salary was $12,000 and minimum wage was about $1.75 per hour.

As to insurance: it's hard to determine because for many years our insurance was free as my employer used to pay for it. So I'd have to say the insurance cost for the years it was not free was about : $20,000 (20 years of group rate health insurance premium) for one person ; and my employer during years of 1979 to 1988 when he paid it was about $2500 for one person (9 years of group rate health insurance premium)

Also, you have to add in the "loss of income" costs -- the loss of income for each day taken off of work to go for testing and the loss of income when you can no longer work due to your "un" or "mis" diagnosed disease. This is the true cost of illness: reduced income or no income and reduced or lost opportunity to work (i.e., turned down for promotion or raise because you "are out too much" or you are perceived as being "sickly." That's the monetary loss that society does not seem to want to add up and see it as the true cost (along with healthcare and health insurance) that is harming our society.

My husband's illness has cost us not only medical costs but 30 years of income that a healthy man would have made.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I can't give an exact number for all the time I was ill, 15 years to diagnosis after daily D set in but I was celiac since childhood, but the year before I was diagnosed we spent $17,000 (no that is not a typo) on my medical needs, the year after diagnosis we spent about $700. You would think insurance companies would be the ones to give the biggest push for testing since it resolves so many issues for so many people.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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In General I think it is in the 100, 000's for most patients... If you think of unnecessary surgeries that doctors do.

One of my Doctors said that many patients whom are diagnosed with abdominal problems, have the most unnecessary operations of all, because and I have heard this before that these patients keep running to the Doctor and then they get tiered of all the complaints and then they start operating.

The thing is the Doctors can't be blamed ( they usually only know what they have been taught) The hospitals are running a business, It is a business like any other.

Another doctor told me " Aha you suffer from headaches and stomach aches , that is the worse, the doctors hardly ever can really figure it out".

Idealy the Doctors would know more about Celiac, improve testing and get the word out, so that we can have happier healthier lives. :huh:


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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We spent $450 for the initial visit to an osteopath that diagnosed my daughter on the first visit as gluten intolerant. She never saw an md. Shes given up most gluten and if she does eat it she knows. So the diagnoses was right even though she has not had a biopsy. Praise God for direction!


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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I want to give a big THANK YOU to everyone that help me with my school project. So far I have finished my outline and have done my oral presentation and received 20/20.

Besides getting a good grade it's really great to educate all my fellow students and teachers that have never heard of celiac.

Thank you

Kim

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