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Maintaining Your Medical Insurance
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I am beginning a new thread, because there have been several inquiries regarding maintaining medical insurance after a diagnosis of Celiac Disease.

Please contribute your situation or professional information. :)

Thanks!

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I am beginning a new thread, because there have been several inquiries regarding maintaining medical insurance after a diagnosis of Celiac Disease.

Please contribute your situation or professional information. :)

Thanks!

As I understand the Affordable Care Act, if the Supreme Court upholds some or part of it in June, insurance companies will not be allowed to exclude people with pre-existing conditions. Currently, the way insurance companies make money is by only insuring healthy people. Under the ACA, the mandate will require everyone to buy coverage, or pay a maximum penalty of $665, which will be deducted from a tax return. You cannot be jailed for not paying the fine, no can any liens or wage garnishments be levied upon you, so the mandate is actually pretty weak. The provision was made thus to ensure the insurance companies cooperation, one argument in favor of single-payer, medicare for all type health care.

Although one might expect this to be a huge giveaway to insurance companies, the growth in health care spending in the U.S. has slowed. This can be explained partially by the recession (no employer based health insurance), but also by new models of cost sharing with employees, and more encouragingly, by new global payments systems.

Global payment systems work by focusing on health outcomes rather than fee for service. It focuses on preventive medicine, and standardizing costs between hospitals for large bills like imaging and surgeries. For celiac and gluten sensitive patients, who need consistent testing over their lifetimes, this will result in huge cost savings to the individual, the employer, the government, and the insurance company.

In Massachusetts specifically where I live, everyone HAS to have insurance by state law, and there are high risk pool exchanges for those with pre-existing conditions. Those with low incomes are subsidized, and you pay on a sliding scale according to your income. The goal as I understand it is basically to have people pay 10% or less of their income for health insurance. The ACA is modeled off the Massachusetts system. B)

ETA: The Diane Rehm Show had a great hour long discussion about the near future of the healthcare system. You can listen to it at

thedianerehmshow dot wamu dot org

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My problem is not insurance denial. It's a rate up. They will not reduce the rate unless there have been no symptoms for a year. But with 3 little children it's nearly impossible to avoid accidental exposure. It's frustrating because our health is great and we hardly spend any money on health care. We applied for a $12,000 deductible plan and they still rated us up 133%. It is more than I can bring myself to pay because we just don't use that much health care.

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My problem is not insurance denial. It's a rate up. They will not reduce the rate unless there have been no symptoms for a year. But with 3 little children it's nearly impossible to avoid accidental exposure. It's frustrating because our health is great and we hardly spend any money on health care. We applied for a $12,000 deductible plan and they still rated us up 133%. It is more than I can bring myself to pay because we just don't use that much health care.

That sucks. It just leads to a heads I win, tails you lose situation with the insurance company. What you've done of course is take the option they wanted you take, and not bought their product because they've priced you out of the market. If you HAD, though, they could have claimed any minor claim was evidence of continuing disease process. Get a cold? Definitely celiac. Have headaches? Celiac. Sinus infection? Celiac again. Then they could have jacked up your rates again, where you most likely would have dropped out or they would have bilked you for even more money. Awful system.

Granted, you KNOW you have Celiac, and thus are probably taking care of yourself. But I personally would not want to go without monitoring for years at a time, not that it is in any way your fault.

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We actually do not even have Celiac. Testing was negative and genetic testing showed gluten intolerance but no Celiac as well. But the insurance doesn't care. It's all the same to them. But no insurance doesn't mean we would go without monitoring anything. It was a high deductible so we planned to pay for routine care and minor problems with cash. (And honestly I wish more people would do that). I prefer it that way. My only worry with not having insurance is if something large and unpredictable were to come up. That's what insurance is supposed to be for.

Anyway, I would just say be careful how you fill out insurance applications. Be honest, but don't put every little symptom that may not be connected with the disease. I think that's what got us and now we have to go back and prove that they aren't related in order for them to even consider reducing the rate.

That sucks. It just leads to a heads I win, tails you lose situation with the insurance company. What you've done of course is take the option they wanted you take, and not bought their product because they've priced you out of the market. If you HAD, though, they could have claimed any minor claim was evidence of continuing disease process. Get a cold? Definitely celiac. Have headaches? Celiac. Sinus infection? Celiac again. Then they could have jacked up your rates again, where you most likely would have dropped out or they would have bilked you for even more money. Awful system.

Granted, you KNOW you have Celiac, and thus are probably taking care of yourself. But I personally would not want to go without monitoring for years at a time, not that it is in any way your fault.

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We actually do not even have Celiac. Testing was negative and genetic testing showed gluten intolerance but no Celiac as well. But the insurance doesn't care. It's all the same to them. But no insurance doesn't mean we would go without monitoring anything. It was a high deductible so we planned to pay for routine care and minor problems with cash. (And honestly I wish more people would do that). I prefer it that way. My only worry with not having insurance is if something large and unpredictable were to come up. That's what insurance is supposed to be for.

Anyway, I would just say be careful how you fill out insurance applications. Be honest, but don't put every little symptom that may not be connected with the disease. I think that's what got us and now we have to go back and prove that they aren't related in order for them to even consider reducing the rate.

I work within the life insurance industry so not myself an expert on how health insurance is viewed by carrier underwriters. But there is someone with my firm who deals with this and I asked her about how gluten intolerance and celiac are viewed in her realm.

First, she suspected that your insurance is not a group plan because she said that individual plans are much more stringent in collection of information than the underwriting criteria for groups. But whether group or individual coverage, she agreed with me that you should be forthcoming on insurance applications about things that will pop up on MIB, the Medical Information Bureau, because chances are they will find out if you have divulged it prior. Otherwise you may have some explaining to do about why you did not divulge. Now, don't stop reading just yet!!!!

MIB sounds like something relating to James Bond, but it's actually a data exchange that insurers use to trade medical info back and forth. It's legal (part of the disclosure you signed on the application) and has been going on for a long time among life and health insurers. They all share info with each other. Here's how it works: You go to your doctor and divulge that you went to a neurologist because you were dizzy. This may pop up on MIB. Or you tell the doctor you have Celiac. Whether they tested you or not, they write a note in their file and this could certainly pop up on MIB, especially if you have divulged this on a prior insurance application. The carriers are rather tight with info on how MIB info is derived, and if there is anyone reading this who actually underwrites and is willing to share it would be great, but I'd be surprised.

I cannot counsel anyone on whether or not they should decide to withhold info from a doctor, I certainly wouldn't if a symptom could be life threatening, MIB or not. But here's the short of it in your case: If you have not divulged to a physician, or provided info on any application, that you were treated for symptoms of gluten intolerance for that year or any year, then it shouldn't "exist" in the eyes of the insurer. I was really astonished that you had been rated for an intolerance to gluten, and while that means the medical world may be taking notice of the importance of that disorder, it doesn't bode well for others who are undiagnosed Celiacs, like me, who are extremely intolerant. But if you have cross contamination issues and do not need medical intervention or consultation, then this will not be on MIB.

In the meantime I am wondering if you could request a review of the rate decision, given that you test negative for Celiac. I'm not sure how feasible that is for you but it may be worth a try. Or, if it is individual coverage, I am wondering if you could just shop around. The fact that you were rated for gluten intolerance sounds extreme to me, but again, I'm not directly related to the health insurance underwriters.

I hope his all made sense.

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Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. 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Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. 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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
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