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Just Got Insurance

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I just got health insurance and was wondering if it would be a good idea to get tested for celiac now. I've been on the gluten free diet for over a year now and all of my symptoms have disappeared. No more migraines, incapacitating stomach pains, diarrhea everyday, fatigue, anemia, etc. In fact, I am even doing better in college. I first went on the diet when my Mom was diagnosed and she said that I should try the diet to see if all of my symptoms went away, and what do you know, it worked! I had seen doctors before that had only prescribed antacids that never worked.

I've had a few slip ups that have been completely accidental and one landed me in the hospital because I was in so much pain that I swore my stomach was ripping itself apart.

I am completely and utterly afraid of ever eating gluten because my most recent accidental ingestions have caused the most painful intestinal cramps I have ever had in my life. Every time my intestines would cramp up it would bring me to my knees and I would have to end up sitting on the toilet for an hour or more in pain. I once ate salad dressing that it turns out had gluten in it. I was stupid and didn't read the ingredients until after I was done...Anyways, that made me sick for a week and anytime I tried to eat something I would have to run to the bathroom within five minutes.

I am scared to death to get tested because I know I have to eat gluten. However, Crohn's is also in my family and I want to be sure it's nothing else.

The only way I would go through that misery is to have them load me up on painkillers and antidiarreah meds, along with drinking lidocaine after I eat. I'm scared I won't be able to do well in school anymore because my brain will be in a fog.

What have your experiences been and have any of you been on a gluten free diet and then went back to eating gluten to get tested?

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To me, it sounds like you really don't need to be tested. You've run the best test on yourself.

You just need to ask yourself what will the test change in your life. It could come back negative but you will still react to the gluten.

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IMHO you are already 'diagnosed'. You had issues that went away with the diet, you have a family member who has been diagnosed and on occasions when you have had a slip up you became severely ill. IMHO the only thing you have to gain by trying for an 'official' diagnosis is months of pain and even after all that you would go through there is always the chance of a false negative. I would consider myself diagnosed if I were you and stay on the diet and healthy but the choice is really yours to make.

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I would consider not being tested given that ins could raise your rate. I have crohn's and think you need to be vigilant given it's in your family. Good luck and congrats on figuring out what's wrong with you; the blasted gluten!

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From my perspective, having a diagnosis on your chart would just be one more pre-existing condition which insurance companies could use to later discriminate against you. Right now you can honestly answer the question "Have you ever been diagnosed by a doctor with Celiacs Disease or any other auto immune disorder" by saying NO.

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Getting dx'd is a very personal decision and no one would think the less of you here if you need a dx or if you just choose to go on the way you are.

I also would not eat gluten for a DX after I finally had insurance. I didn't think I could do it.

But if you feel you really want a dx, you could ask your dr if he would dx you based on dietary response and some other factors. If you had a positive gene test, would he accept that? Given that your family history through your mom shows celiac disease, those three things together might be enough for you to have a dx without doing a gluten challenge. Also he could take into account your hospital visit from being glutened.

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I have to agree with VioletBlue. I was attempting to get new private insurance, one that qualifies for an HSA, but just got denied due to "malabsorption syndrome" - I've never even been diagnosed with Celiac. Unfortunately I stupidly gave my family doctor a copy of the Enterolab results I had done in July 2008 which showed the malabsorption (microscopic fecal fat was 1323 -I wasn't doing too good then) Since then I had repeat stool tests done with my doc which were all normal and then blood tests done after going back on a gluten-containing diet for 5 months, which also were negative for Celiac. I had the tests done because I still was not doing well even after cutting out all gluten, soy, and casein. I believe now that the problem was all the brown rice I was eating - I don't think my gut appreciates ANY whole grains.

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Thank you all for your opinions. After a lot of thought I think it is definitely the better choice to consider being "diagnosed" instead of torturing myself to get tested. All I have to do is remember how terrible I used to feel and how much my life has changed since I have been gluten free.

Although, I really do miss real pizza. :P I just have to keep telling myself, "Remember how gluten makes you feel! You don't want it!!"

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Thank you all for your opinions. After a lot of thought I think it is definitely the better choice to consider being "diagnosed" instead of torturing myself to get tested. All I have to do is remember how terrible I used to feel and how much my life has changed since I have been gluten free.

Although, I really do miss real pizza. :P I just have to keep telling myself, "Remember how gluten makes you feel! You don't want it!!"

I am glad the diet is helping you.

You can still have great pizza just not with a gluten crust. Gluten Free Pantry makes a French Bread Mix that makes great pizza and there are ready made shells. I like the Kinnickinninck ones. I make pizza at least once a week and even non gluten eaters seem to like the gluten-free pantry crust. One hint with the mix, I refrigerate it for a while to make it a little less sticky before spreading.

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