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What Would You Do?

Jrg

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Jrg Newbie
Jrg
Posted

I have an endoscopy scheduled for this Wednesday but was just told that my insurance won't cover it. It's going to set us back probably more than $700 in the end. I'm so completely nervous that I'll spend the money only to get negative biopsy results, which would just frustrate me even more. I already tested positive on the deamiated (sp) gliadin iGa blood test, negative on the others. So I know there's a chance the biopsy could go either way. My question is, what would you do? Just assume you have celiacs, go gluten free & cancel the test, or fork over the money just to know for sure?

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kareng Grand Master
kareng
Posted

Have your GI contest that by giving the insurance company more info? It might delay it a couple of weeks but that is what most doctors offices do.

Jrg Newbie
Jrg
Posted
  • Author

Have your GI contest that by giving the insurance company more info? It might delay it a couple of weeks but that is what most doctors offices do.

They said it was because I hadn't reached my deductible for this year yet. I thought an endoscopy would fall under a different category but it doesn't so I'm not sure if contesting it will do any good.

kareng Grand Master
kareng
Posted

They said it was because I hadn't reached my deductible for this year yet. I thought an endoscopy would fall under a different category but it doesn't so I'm not sure if contesting it will do any good.

That's not the same as your insurance won't pay for it. So an appeal wouldn't make any sense.

Jrg Newbie
Jrg
Posted
  • Author

That's not the same as your insurance won't pay for it. So an appeal wouldn't make any sense.

Well I didn't suggest an appeal. I said that my insurance wasn't going to cover it. I was originally told that it wouldn't be a problem & I would just have to pay a copay, so now that I found out I will have to cover the full amount I'm just wondering what people would do. I'm torn as to whether I should go through w/it or just take my blood results & vitamin/iron deficiencies & just assume to go gluten free to see what happens.

Lock Newbie
Lock
Posted

If it were me, I would go through with the endoscopy IF I trusted the GI doctor to be very thorough and to use the latest techniques to find any villous damage, if the damage exists. If the doctor is not up to speed with diagnosing celiac then a negative result will only confuse you more. But if he is very good, a negative result will assure you that your intestine is healthy. So my answer as to whether you should pay for this and go ahead with the procedure depends on the quality of the doctor.

cyclinglady Grand Master
cyclinglady
Posted

I'm self-employed and pay for our health insurance policy.  When you have a policy that has a deductible, you need to set aside money to cover that deductible.  Seven hundred dollars seems like a lot, but in perspective, it's not really.  Not when it involves your health.  

 

In my opinion, this is an "emergency".  The long term side effects of not treating celiac disease are far more costly.  Would you balk if you thought you had cancer?  If you were in a car accident and needed surgery?

 

That said, if you really can't afford the endoscopy, you can always go gluten free based on your blood test.    My hubby did just that.  Docs suggested that he give up gluten and he did.  He strictly adheres to the diet.  I got scoped only because I didn't have a tummy issues and had a hard time believing that both of us have gluten issues.  

 

Hope this helps!

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kareng Grand Master
kareng
Posted

Well I didn't suggest an appeal. I said that my insurance wasn't going to cover it. I was originally told that it wouldn't be a problem & I would just have to pay a copay, so now that I found out I will have to cover the full amount I'm just wondering what people would do. I'm torn as to whether I should go through w/it or just take my blood results & vitamin/iron deficiencies & just assume to go gluten free to see what happens.

 

 

I suggested it because I couldn't tell why they wouldn't cover it.  Thought it might help.

 

Myself - I would and did pay for my colonoscopy and endo with the deductible.  It cost a lot more than $700 but I had the colonoscopy portion and anesthesia, too.  I thought it was worth it to see the amount of damage and make sure nothing else was wrong.  We put money aside in a health reimbursement account but its too late for you for this year.  If you are young and haven't had anything medical to pay out before, its not something you would want to do.

 

If you decide to pay yourself. I would find out how much deductible you have to meet.  So you know how much your limit will be.  Also, will you have to pay the pathology company for looking at the biopsy?  Pay any additional for sedation?  Does the doctor bill separately from the center where you are getting the procedure done?  Just some additional costs to consider.   

nvsmom Community Regular
nvsmom
Posted

It depends on you. Would a positive endoscopy help you stay gluten-free? What if the endoscopy is negative (there are a few around here with positive blood tests and negative scope - it's not uncommon), will that affect your dedication to the gluten-free diet?

 

I personally think a scope can be useful if you continue to have long term problems (which would be useful if you get re-scoped in the future for comparisson) or there is another un-idenified health issue in play that needs to be found.

 

I personally did not do the scope and just went gluten-free based on a couple of blood tests. I figured that if I continued to have problems, I could always get the scope done in the future to look for other problems.

 

You have to do what you feel comfortable with.  :) Aren't I helpful?  LOL ;) Good luck with what ever you decide to do.

Jrg Newbie
Jrg
Posted
  • Author

Thank you everyone. I went ahead with the endoscopy today, so now I'll just wait for my biopsy results

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    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Oats gluten free?

      By Scott Adams · Posted

      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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