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I Told You I Was Sick!

Ginsou

By Ginsou
in Coping with Celiac Disease

Recommended Posts

Ginsou Explorer
Ginsou
Posted

I'm the happiest person today....after months of excruciating pain, several doctors, and about $8,000 worth of normal medical test results, including blood test for Celiac, (I have no insurance) I finally know that I have known all along. YES, I do have the celiac/gluten problem, and also a dairy problem. Verified by EnteroLabs. I'm so glad I found this forum. Now I can validate my medical problem with the various doctors I have seen. Now, to find the time to perfect some really great chocolate chip cookies, bread, and hamburger buns.

The fecal tests make sense to me....the problem is in your intestines, not your blood.

Thank you, thank you for this forum.

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confused Community Regular
confused
Posted

would u mind sharing your results with us.

Im so glad you finally got some answers, isnt it great when you know its not all in your head.

paula

elye Community Regular
elye
Posted

Congratulations, Ginsou! I can't tell you how disappointing it is that there is no enterolab in Canada, as I have a couple of acquaintances and two family members who have tested negative on the panel (and we all know the track record of those negatives) but who I am sure are gluten intolerant.

JNBunnie1 Community Regular
JNBunnie1
Posted
Congratulations, Ginsou! I can't tell you how disappointing it is that there is no enterolab in Canada, as I have a couple of acquaintances and two family members who have tested negative on the panel (and we all know the track record of those negatives) but who I am sure are gluten intolerant.

Is there some medical reason I'm not aware of to get an official diagnosis? I'm self-diagnosed, is there anything about that that's somehow dangerous to me? I'm always counseling people just to try going gluten-free, if you feel better, then hey! there's your answer. Am I wrong?

elye Community Regular
elye
Posted
Is there some medical reason I'm not aware of to get an official diagnosis? I'm self-diagnosed, is there anything about that that's somehow dangerous to me? I'm always counseling people just to try going gluten-free, if you feel better, then hey! there's your answer. Am I wrong?

No, there's absolutely nothing wrong with trying the gluten-free diet for all KINDS of things. :) Some people, however, seem to need a positive test diagnosis to actually believe that they're intolerant. Too bad, because the only truly accurate diagnostic is dietary response.

mommyagain Explorer
mommyagain
Posted
Is there some medical reason I'm not aware of to get an official diagnosis? I'm self-diagnosed, is there anything about that that's somehow dangerous to me? I'm always counseling people just to try going gluten-free, if you feel better, then hey! there's your answer. Am I wrong?

A lot of people feel like they "need" that official diagnosis, because otherwise they are just doing this crazy fad diet that's difficult, expensive... it makes them feel less crazy when they are doing what the doctor told them to do...

Also, a lot of prescription medications have gluten in them. It is usually possible to find gluten-free alternatives, but docs may be less likely to go out of their way to find it for someone who is self-diagnosed.

That said, I am self diagnosed, and feeling a LOT better on a gluten-free diet. But, my husband (son of 2 doctors) wants me to go back on gluten (after the baby is born) so I can get an official diagnosis. He believes doctors and tests more than he believes in listening to your own body. I understand to some extent, but I do not think I'll be able to force myself to consume gluten again just to satisfy his need for an official diagnosis.

Ursa Major Collaborator
Ursa Major
Posted
Congratulations, Ginsou! I can't tell you how disappointing it is that there is no enterolab in Canada, as I have a couple of acquaintances and two family members who have tested negative on the panel (and we all know the track record of those negatives) but who I am sure are gluten intolerant.

Enterolab will send their test kits to anywhere in the world. You have to send the sample back by overnight courier, which isn't cheap. I just ordered the full panel for my youngest daughter, and I live in Canada as well.

And Ginsou, I understand that some doctors won't believe you if you can't show them a paper with numbers. Mind you, a lot of them don't believe in Enterolab and might not believe you anyway. Still, it makes life easier in many ways if you can tell people you have been officially diagnosed with gluten intolerance, than telling them you figured it out yourself.

Most people believe me no problem. But one friend, who is a midwife, wanted to know if I was diagnosed by a doctor. She only believed me when I told her that my doctor agreed with me! How weird is that, my doctor knows nothing about celiac disease.

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JNBunnie1 Community Regular
JNBunnie1
Posted

My only concern is prejudiced life insurance companies when I get older. If I don't have a diagnosis, they can't hold it against me, haha.

loco-ladi Contributor
loco-ladi
Posted

I gave up on the doctors, and since going 100% gluten-free I feel so much better I cant believe how sick I was, I don't need the paper with numbers on it to tell me that was my problem all along.

sickchick Community Regular
sickchick
Posted

Go! Go! Ginsou! I am giddy for you! :lol:;)

Ginsou Explorer
Ginsou
Posted
  • Author

JNBunnie1

No, you are not wrong. I'm from a medical background, and for most of my years have been able to diagnose my own problem, and treat it without seeing a doctor. I worked full time and raised two children by myself, and did not want to spend my free time at a doctor's office.

Having an official diagnosis means:

I can carry on large containers of Gatorade, Pedialyte,Blue Diamond and Almond Breeze drink, and a 16 oz. bottle of salad dressing when traveling by airplane, which I have already done twice in the past month. My medicalert card verifies my condition. You need something in writing from a DR to validate your medical condition to bring these items onboard.

I can deduct my exorbitant food bill from my income tax. A Dr's verification is needed per the IRS.

When I have health coverage a year from now, I will be allowed to have an endoscopy and colonoscopy (if I want them) more often than once every 10 years.

I now have documentation that can be provided to 4 other family members, including my 2 sons, who are all experiencing digestive problems with no diagnosis.

I agree that self diagnosis is great. When my son was 12 years old he told me he needed to see a doctor, that he had hepatitis. He was right. The Dr. was astounded that a 12 year old could diagnose his own illness.

Sometimes you need a little more to prove that your continuous health problems are not just a figment of your immagination.

gfpaperdoll Rookie
gfpaperdoll
Posted

Better triple check that IRS ruling, you can only deduct the cost of the food that is above what you would normally spend on the same item with gluten.

& I have no problem taking my food things on a plane without a dx, my doctor is happy to give me anything that I need for travel... you know when you tell a doctor you have something they are not going to say oh - really well let me see the piece of paper that says that you have that. I have never had anyone xray me to prove that I do not have an appendix...

I know more about celiac & gluten than my internal med doc - who I use for my PCP, & out of his large practice he only has one other celiac disease patient - which he did not diagnose either. When I talk to his nurse she cannot believe what great health that I am in - because I go in once a year with no meds etc. She said that people my age drag in there & bring a bag full of meds - she said they should all be on a gluten free diet... :)

Ginsou Explorer
Ginsou
Posted
  • Author

Will check with the IRS....guess even their own employees give out misinformation. We don't pay that much for taxes anyway, am retired.

I tell doctors that I'm perfectly healthy....except for being allergic to everything! I travel full time so usually don't see the same doctor more than twice. I also don't take meds.....and agree than most people my age are "over medicated". One doctor told me I was incredibly healthy......most likely because of my diet. That was before the gluten problem. Now I'm back to incredibly healthy.

hathor Contributor
hathor
Posted

Yes, my understanding is that the tax deduction would be for the cost of food above what you would spend if you didn't have whatever medical problem you have. So you have to keep track of what you spend and what you would have spent otherwise.

Also, remember your medical deduction is for the amount spent over a certain percentage of your adjusted gross income.

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