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LADYMCDUFF's Photo LADYMCDUFF Posts: 132
12/13/09 12:02 P

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I am in the process of being tested. I have had to go back on gluten to do it. I know afterward I will go back off gluten (can hardly wait). It can make a difference to health care personal. Some meds have gluten and if you are brought in and not able to communicate you might be fed gluten containing products if it is not documented.

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NIVRAP07's Photo NIVRAP07 SparkPoints: (6,361)
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12/12/09 9:49 A

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Thanks for the replies! I decided not to do the scopes for now. I am going to order some lab work from Enterolab. The colonoscopy/endoscopy was going to cost a fortune out of pocket and from what I've read across the Celiac communities, they are not reliable enough to spend that kind of money right now. Enterolab seems to have a better track record for diagnosing this particular disease for a fraction of the cost.


There is no substitute for hard work!





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DOTSLADY's Photo DOTSLADY Posts: 10,018
12/11/09 2:50 P

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When I was "gold standard" diagnosed only four years ago it was my understanding it was important especially when dealing with doctors; that DOCTORS wouldn't take you seriously without that diagnosis. Indeed, when I visited new doctors, they wanted that paperwork (almost disbelieving maybe because I wasn't rail thin and starving looking). :P

You hit the nail re: family members and an official diagnosis. I know some families wouldn't take it seriously without it, but others are fine without. That's personal.

I know one person who had definite DH-type symptoms and or canker sores (running down her throat). Her celiac panel was negative, so she did genetic testing and she had two genes, one from each parent. She went gf and hasn't looked back. She thought she had a red food allergy for years :P.

Official diagnosis on your insurance might be used against you for future coverage, OR it would allow further studies/testing if you need it, too. I often ask for further blood tests and they're covered. Once I had a denial, but the codes were wrong: I had to have them change my dx code for a celiac diagnosis.

I've also read some kids are denied coverage.

Edited by: DOTSLADY at: 12/11/2009 (14:51)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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FORAFITME's Photo FORAFITME Posts: 660
12/8/09 8:32 P

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My 2 younger children do not have an "official diagnosis", my pediatrician believes it will be a discriminator in the future for insurance and chooses not to test them unless necessary. I agree and our GI Dr. didn't say anything about having the 2 children tested. My oldest daughter has not had the scope but had the DNA markers and the gliaden test. This and her change of health was all we needed. The kids have reactions to gluten and that is enough for the Drs. and us.

Mind you we don't claim anything for a tax/medical deduction.

In the Service of the King.


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DJ4HEALTH's Photo DJ4HEALTH Posts: 40,589
12/7/09 9:23 P

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Some times it is just good to know and also there are people who won't believe it because a doctor had not diagnose it. So since you are already still on wheat go ahead and get it and that way you can say that you officially have CD. I too was tested but I was not on wheat when they did it and will not go back on just to be tested but if I was still on wheat I would get tested. Just to know for myself.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley



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ILLINITEACHER52 Posts: 7,257
12/7/09 5:46 P

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I don't have an official diagnosis either. I just know that being gluten free is the way to go for me. Does it matter for insurance purposes if you have a diagnosis?

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DESERTFLOWERG's Photo DESERTFLOWERG Posts: 1,437
12/7/09 2:34 P

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I don't have an answer. I've been gluten free since mid-2007 now and I don't have the least interest in the PAIN of eating gluten again just to get a medical diagnosis. In my opinion, I've already been through the best diagnostic test and that test was a resounding positive.


Desertflower
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When it's time to die, let us not discover that we have never lived . . .
Henry David Thoreau


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12/7/09 11:15 A

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Everything I've read says that all the tests are very unreliable. Has your friend tried living gluten-free and did it make a difference? I would trust that above all other indicators.

There is no substitute for hard work!





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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,900
12/7/09 9:59 A

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I have a friend who had 2 different Drs tell her she had Celiac. They did the scope and she didn't. They redid the blood work and it came back neg. Go figure.



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12/7/09 7:47 A

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I am getting ready to have my colonoscopy/endoscopy later this week. I'm 95% sure I have Celiac Disease and am hoping to rule out the other possibilities, Lupus & Crohn's. My husband and I were talking last night and he asked me why it's so important to me to get the diagnosis when it's so obvious that gluten is the thing that makes me sick.
Honestly, now that we know the tax deduction isn't going to matter for us, I couldn't give him a good answer other than...so other people don't think I'm just crazy!
Not a good answer!
But, really. I know it's Celiac. He knows it's Celiac. So, why is a label from a doctor so important? I don't know. I already know my kids and siblings and parents need to be aware of their risk.
What about you? What has being officially diagnosed done for you, if you didn't already know it was Celiac?

There is no substitute for hard work!





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