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Anonymous Testing Because Of Insurance
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Does anyone know of a place that will test you for Celiac Disease anonymously? I am in the Milwaukee/ Chicago area. I have individual health insurance and am concerned that my rates will go up if I am "confirmed" with the disease. Since the outcome is really good if you are diagnosed and stay gluten free for the rest of you life, I don't think this is fair. I went gluten free about 2 years ago out of choice, and felt much better, then because I was not officially diagnosed, I have slowly made exceptions occasionally. I am having similiar but not perfectly typical symptoms and would just like to know for sure since it is so hard to but heads with in-laws who ignorantly think avoiding their food is an insult. Please help!

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Enterolab would probably be good because while I don't know if it's anonymous, it is not accepted as formal diagnosis by doctors, nor is it accepted by insurance. However, most celiacs who have used Enterolab are satisfied with the results.

On not being diagnosed in the first place: it's good that they not know it for what they charge you, but it's bad because how can a visit to a celiac dr. be covered if you supposedly don't have celiac disease in the first place? And if you ever needed medical treatment due to "celiac" they might not pay it since you supposedly don't have this in the first place. Your decision, though, just showing you the positives and negatives. ;)

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I'm not so sure having a formal diagnosis will help with the in-laws. Even today some of the people who knew me when I was at my glutened worse still don't get it.

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Yes...many won't accept that you have it even with the test results. The only thing is, if you got a diagnosis (even anonymous) you would have an even more "valid" reason from their perspective...also give them so literature, maybe...print off some articles about symptoms, diagnosis, how many it affects, etc.

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Would insurance go up? Does anybody know? I thought that my insurance was just a flat rate that everybody at my husband's work pays. It goes up every year, but I didn't think this was because of anything you had been diagnosed with. I know at my work when they went over insurance plans they could tell us how much we would pay and it only changed depending on what plan you went with. They didn't say anything about diseases you may have. Now, however, if you go to a different insurance company I wonder if they may call something a "pre-existing condition" and not cover it.

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ENTEROLAB-

I did find Enterolab, and I will probably try that. I am trying to get my sister and mom to test at the same time for hereditary reasons AND My mom is chronically ill, thyroid problems (had removed due to Graves), allergies, horrible fatigue and her mother had osteoporosis, plus she just feels crummy ALL THE TIME. My sister has bowel problems chronically.

IN-LAWS

With the IN-LAW thing, I know some will understand and some will not. My mother-in-law puts out peanuts on the coffee table even though my nephew at age 3 could DIE if he consumed even 1. Some people live life saying "Don't confuse me with the facts. My mind is made up!" I don't care how mad they get at me, I would just feel better if I didn't have to be vague.

INSURANCE

I have an individual insurance policy and I know you can get "rated" for any condition or disease. With group insurance through an employer, you are right, you will not necessarily see a rise unless many employees start making huge claims and coincidentally all get sick or in accidents. The group would be considered a

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Good points. Definitely get your mom and sister tested-- 1/22 first degree relatives have it and they show symptoms, so it would be good to test for it.

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If you are already under a group plan through an employer you would not see a rate change or have it labeled a pre-existing condition. If you switch insurance plans some may consider celiac a pre-existing condition and some may not. Private insurers would probably look for any chance they get to gouge you. My employer was bought out by a much larger company and already they have begun to weed out some people who have chronic health problems. If you are in that situation testing might be a bad idea.

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Ok, I'm concerned about insurance. If you get private insurance and they consider celiac disease a pre existing condition, what about if you have to go to the emergency room because of say, chest pain or severe stomach distress? Does that mean they won't cover the visit?

I'm not formally diagnosed so I wonder if they can count this anyway? But I have been to the doctor a lot lately which I'm sure will be a red flag for something!

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Hard to say on that one. The doctor would have to say that it was specifically related to celiac disease. Chances are they won't because we all know how much doctors know about celiac disease.

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Just got approved for a lower price category in my healthy insurance and to qualify you have to answer all kinds of health questions. I was honest and told them that I have a gluten intolerance and fibromyalgia and I got approved for the new policy. They ask for permission to go into your records at the doctor's office too. I am 60 years old and was very happy to be accepted into this new insurance as I was so worried about what premiums I was going to have to pay once I turned 60 and got into the 60-65 group. Hope the new prices hold now.

Barbaa

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Good for you! What company did you use? I may be searching for private insurance myself soon.

Did you do this b/c you retired or work in your own business? Just curious as to the circumstances.

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I looked at my health insurance application and the only things they were really concerned with were cancer, AIDS, heart disease and diabetes. I would shop around for insurance because what is unacceptable to one may be okay with another.

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    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
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