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Blood Work And Health Insurance


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I have for the longest time showed symptoms of celiac disease. They were never all that serious or severe to be a major inconvenience- so I never looked into it. However I was recently talking to a friend and she mentioned that she is getting tested for this. When she described her symptoms I realized that these were the same things I would get, just a bit less severe. After that discussion I to feel like it would be very prudent to get tested too.

HOWEVER here is my issue. I am 23, and on my parents health care plan which is provided from their work. It is a great plan but I become no longer eligible when I turn 25. I co-own a small business and we have a small business health care plan for a few of us. But like I mentioned before, my currant plan is great, so I have not switched to my own business health care plan as I know it is an inferior plan. I want to get tested as there are many items I currently eat which I enjoy, mostly beer, that contain gluten. But if I do have this disease and it goes on my record then I face a nightmare of a problem when I will need to switch off my currant health care plan.

My question is: I have read somewhere that you don't "officially" get diagnosed with celiac in your health record until it is proven with a biopsy. Is that true? If it is then I could use the other forms of testing, such as blood work, to know if have it or not and not worry about a positive test ruining my future of getting a new health care plan.

Does anyone have any advice on how to get tested for this and not have put on my record?


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MySuicidalTurtle Enthusiast

If you do not want it on record then just go 100% gluten-free for a few months. If you feel better then don't eat gluten. You have to really make sure you are careful or else you will still be sick. That way you aren't being tested but are testing your body's reaction.

Also, I was diagnosed with a blood test. After graduating college I had to go off my parents healthcare plan. I did not have any problem getting my own health care in regards to my Celiac. I listed it and all but no one ever commented on it.

mom26boys Apprentice

I'm new to all this myself, but it seems to me that you could also get yourself tested through enterolab or one of the other labs that does the genetic tests to see if you have the gene for it, since you don't need a doctor's order for it and unless you submit it to your insurance for reimbursement, then they wouldn't have record of it. If you have the gene and you have a positive reaction going gluten free, then you can probably assume you have it and you don't have to go through your insurance company and risk having problems when you switch. Then you will know for sure that you need to go gluten free. The only problem I see with that is that if you want to be "officially" diagnosed whenever you switch to your own insurance, then you would have to go back on the gluten for the "official" tests, which won't be any fun after you have been off of it for a while. Again, I'm new to this myself, so forgive me if I'm wrong. Hopefully others will offer you more advice as well :)

ravenwoodglass Mentor

Not everyone has problems with insurance after diagnosis, but some do. It is not possible to say which group you would fall into.

I would also suggest Enterolab if you don't want a diagnosis on your record but I would not go by your gene testing but by the testing they do for antibodies in your stool. The reason is that the gene tests only tell you what genes you have, they do not tell you whether or not you actually have gluten sensitivity. Many, many people have the genes associated with developing celiac but do not have reactions to gluten. Gene testing cannot diagnose you by itself although gene testing can be a helpful part of the diagnostic process but the truest test is how your body responds to gluten in your diet and how it responds when gluten is eliminated.

Roda Rising Star

If you get diagnosed while having insurance and don't have a break in coverage, then it shouldn't be considered a preexisting condition and should cover. I was diagnosed with hashimotos in 2000 and had my insurance through work. I have changed insurances/jobs twice during that time and as long as I remained covered (I took the cobra ins. until the new ins kicked in) I have not had any problems with the other insurance covering. Pretty stupid though that the ins. companies consider that a prexisting condition. If I had had a period of non coverage then I would have had to wait a year before the new ins covered it.

chiroptera Apprentice

One other point is that if you ever have to self-insure in the future, any pre-existing condition usually makes your rates skyrocket. They nailed my husband and I for everything and you have to disclosure everything.

There are, however, benefits to getting an official diagnosis such as you may be able to deduct the price difference of buying gluten free food from regular food if it meets a certain amount of money based on your gross income. Also, doctors "may" be more willing to screen you for other diseases and conditions based on a celiac diagnosis.

We did Enterolab, plus gene testing for our daughters (because they already had MAJOR improvements on a gluten-free diet) so for us, that's all we needed. Plys, we didn't want to have them go under general (for adults it's heavy sedation) for a biopsy.

It's just a personal decision.

Good luck in whatever you choose!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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