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Celiac Disease Pre-Diagnosis, Testing & Symptoms

If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.


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    • Treen
      Wow. Okay. I’m definitely going with private testing. And since my sister was diagnosed just last month, I’ll have her as a great resource. I’m otherwise in excellent health for a 60 year old woman. No diabetes, normal blood pressure and cholesterol levels. I work out regularly, although I’m too thin because I’m afraid of food. I appreciate both of your helpful, informative insights - Scott Adams and @plumbago.  I’ll let you know the results of my panel (giving blood sample on Wednesday) here on this thread. 
    • Scott Adams
      Celiac disease was considered a pre-existing condition that affected costs before the ACA, and I was paying life insurance premiums at age 45 that a 70 year old would have to pay because of it (this was back when it was my only diagnosis--not that case now).  I don't disagree with @plumbago's approach here either, but just keep in mind, it will be on your PERMANENT RECORD!😉 On top of this, a majority of job applications that I've see in the past couple or years include "celiac disease" as a pre-existing condition that the employer requires you to disclose--do you have the same shot at the job if you say yes?:  
    • plumbago
      Treen, I'm not sure I totally understand, but if I were you, while you still can, get your doctor to run the celiac blood test panel (the complete one) now, and if any of those tests turn out to be positive, get him or her to order you an endoscopy with biopsy. Do this while you still have insurance that will cover the cost! If it turns out to be positive, it seems your worry is that you would not then be able to get health insurance after 2025 because celiac, you say, is a pre-existing condition? Being in the state (I am from there, btw), you no doubt have observed the rate of metabolic disease in the population, conditions that are far more emblazoned in neon lights that say "pre-existing!" than Celiac, I would think. Meaning, it's quite likely that a near-majority would have pre-existing conditions. You might not even be denied. If I were you I'd reach out to either UAB (below) or the Alabama celiac facebook group with your concerns, and even research the topic - was Celiac considered a pre-existing condition before ACA? I think it was, but at any rate, maybe get the local perspective. The alternative I suppose is to wait to get tested, as you indeed say, until after you have new insurance. Not a bad strategy (I don't think it's really dishonest, but that's just me), but personally I like to have it all on the record so we're all on the same page. At any rate, if your fears bear out, a whole LOT of us are in a bunch of trouble, no??  UAB Digestive Health Center https://www.uabmedicine.org/medical-professionals/clinical-services/digestive-health-center/celiac-disease/
    • Scott Adams
      I personally don't believe you have an obligation to disclose such a diagnosis with your doctor or insurance company, especially if a health insurance company can use this information against you for the rest of your life--and yes, it does look like we may be headed back a time a place where pre-existing conditions could affect the cost and ability to get health insurance--but that remains to be seen. If we were talking about a congenital heart condition I might offer different advice, but for celiac disease where the only treatment is a gluten-free diet and there is no subsidy for gluten-free food costs in the USA, it seems reasonable for you to go with more privacy regarding your test--just confirm with the company that your results will ALWAYS be private (i.e. see 23andMe news--their data has or will be auctioned off in bankruptcy proceedings). 
    • Treen
      I’m just worried about pre-existing conditions and my imminent loss of insurance. I’m self-employed. Finding insurance outside the ACA marketplace in Alabama is almost impossible even when you’re healthy. I still have 5 years before I’m eligible for Medicare. There is no treatment for Celiac except gluten avoidance. If Celiac disease becomes part of my medical history — even though the ‘treatment’ (gluten avoidance) is ‘free’ (only I can treat myself and it costs my insurance nothing), I might find myself uninsured if something like cancer arises in the next 5 years. 
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