What Are The Benefits Of An Official Diagnosis?

[WheatChef]

I went gluten free about 2.5 weeks ago and went to see a gastroenterologist two days ago. He drew blood work and scheduled me for a biopsy considering all of the drastic changes in symptoms I was exhibiting due to my gluten free diet. He did ask me if I really needed the biopsy for any reason as with how I'm doing on this diet there would be no real reason to change my diet related to positive or negative celiac results.

There were two main reasons that I made the appointment to see him in the first place. At first I wanted to make sure all these drastic improvements weren't just all in my head. But as the days go on, my body continues to get more energetic, my physical conditioning is picking up at a severe neck-breaking speed compared to any other time in my life, my lung capacity (home monitored due to chronic asthma which has also disappeared) has gone from being borderline low to almost off the charts and my weight and blood-glucose have finally stabilized. I accidently CC'd myself the other day by not washing my hands in between feeding my dogs a treat (full of wheat) and then eating chips and hummus (finger licking good unfortunately) and didn't realize they contained wheat until after my heart started racing, my anxiety which has been absent for the past week and a half suddenly returned in full force and experienced some minor GI issues.

After that I have no question in my mind if my gluten issues are real or not. However the other issue was that I was hoping I could use the test results as better leverage to convince my pre-diabetic father to go gluten free in an attempt to save not only his life but also his somewhat more declined than it should be quality of mind. I also want to make sure that I can convince my brother and sister to try a gluten free diet too as they both also suffer from problems of chronic inflammation and hypoglycemia.

The doctor already drew some samples for blood work but haven't had the endoscopy and could save some considerable money by both not having to pay for a procedure that wouldn't really change my new dietary habits anyways and also could save money in the future by not having to potentially be slapped with higher insurance premiums for a pre-existing condition.

Is there any reason I'm not thinking of for actually getting a confirmed diagnosis?

[newgfcali]

Although I can't find it anywhere in the IRS website, I've read in a number of places that people with confirmed Celiac (letter of proof from a doctor) can deduct the extra cost of gluten-free food from their taxes as a medical expense. In order to take advantage of this, your medical expenses have to exceed 7.5% of your AGI. The amount you can deduct is the difference between the gluten-free item and it's "normal" counterpart. You have to save all of your receipts. I've also read that you can deduct travel expenses you incurred to get to the specialty store for your gluten-free items and that you can deduct the shipping charges for online purchases.

These deductions aren't given to people like me who are non-Celiac gluten intolerant. Just people with officially diagnosed Celiac disease. No fair (but who said the IRS was ever fair?)

Again, I haven't found this on the IRS site, and I'm not a tax person, but if you think you might be able to take it, you might want to talk to your tax adviser about it.

That's the only other reason I can come up with for getting the actual diagnosis, other than those you've already mentioned.

[Yup]

Although I can't find it anywhere in the IRS website, I've read in a number of places that people with confirmed Celiac (letter of proof from a doctor) can deduct the extra cost of gluten-free food from their taxes as a medical expense. In order to take advantage of this, your medical expenses have to exceed 7.5% of your AGI. The amount you can deduct is the difference between the gluten-free item and it's "normal" counterpart. You have to save all of your receipts. I've also read that you can deduct travel expenses you incurred to get to the specialty store for your gluten-free items and that you can deduct the shipping charges for online purchases.

These deductions aren't given to people like me who are non-Celiac gluten intolerant. Just people with officially diagnosed Celiac disease. No fair (but who said the IRS was ever fair?)

Again, I haven't found this on the IRS site, and I'm not a tax person, but if you think you might be able to take it, you might want to talk to your tax adviser about it.

That's the only other reason I can come up with for getting the actual diagnosis, other than those you've already mentioned.

If you are Canadian you can claim your gluten free food and you get part of the cost back.

[newgfcali]

If you are Canadian you can claim your gluten free food and you get part of the cost back.

Yet another reason for moving north!

[Darn210]

In my case, I'm happy to have an official diagnosis for my daughter so that the school system recognizes certain consessions that she needs. I was talking with the school nurse today and asked her how the school system handles cases where there is no medical diagnoses. She said she's perfectly happy to take the word of the parents that their child requires a gluten-free (peanut-free, egg-free, dairy-free . . . fill in the blank). Her thought is "who would know better than the parents". She did follow-up with "Unfortunately, every school is different and some will only help you if you have a doctor's diagnosis."

I also look at this that when the time comes for my daughter to go to college (we've got quite a bit of time yet) that we will have the ability to get her excused from any mandatory meal program or what have you (depending on the college).

Now, it sounds like you might not require an official diagnosis for either of these reasons, but I list them here for any parents that come browsing by.

[psawyer]

Janet mentioned some reasons for a child/young adult to need the documentation.

From the perspective of an adult with celiac disease, there may be some advantages. If you are admitted to hospital, having a recorded diagnosis may help to have the hospital take your need for gluten-free food seriously. If you are in the United States, the Americans with Disabilities Act (ADA) requires your school or employer to make reasonable accommodations for your condition if you have the medical diagnosis.

The negative side is that insurance companies may consider the recorded diagnosis to be evidence of a "pre-existing condition" and deny coverage for related ailments. Fortunately for me, here in Canada, there are no pre-existing conditions. Coverage cannot be denied unless there is fraud.

[ravenwoodglass]

It sounds like your doctor is willing to diagnose you based on your dietary response.

"He did ask me if I really needed the biopsy for any reason as with how I'm doing on this diet there would be no real reason to change my diet related to positive or negative celiac results."

I would let him. He is a wise doctor.

[WheatChef]

Thanks for the replies everyone, I was still unsure about whether I should cancel the biopsy or not (vehemently abhor unnecessary medical procedures as well as the price that accompanies them) and so on monday while waiting for the doctor to call me back I decided to double check one last time and ate a tablespoon or so of AP flour. I considered going out and getting some delicious artisan bread or something else I know I miss but wanted to make sure that any symptoms I felt could only be attributed to the gluten. Well by the time the doctors office called me back I more than had my answer as a number of physical symptoms had returned and my mind was just not present. I recorded all of the events (including somehow getting slightly intimidated by my washing machine) in a nice little timeline and will be discussing it with the doctor when I next see him.

I think overall he wanted to make sure that there wasn't something else at issue here but unless that flour was severely contaminated with heavy metals I think it's kinda obvious.

[coconut12]

thanks to everyone in this thread. It was very helpful.

[kareng]

I wanted to be diagnosed officially for many of the above reasons also:

- Insurance wouldn't pay for tests for other things that go with Celiacs like a bone scan for osteoporosis

- Doctors won't test my kids who have no synptoms unless I have an official DX (& insurance wouldn't pay)

- I have a Dr note to explain that I might need to bring my own food into arenas/stadiums, etc that wuold not normally allow outside food

- Wanted to find out the extent of the damage & if anything else was wrong in that location (also had coloscopy at same time)

Got denied for extra Life insurance but could probably get it approved with some explanation.

Last reason - So I can officially join the Celiacs Disease Club

[gluten-freedom]

Can a person be officially diagnosed by a doctor without the endoscopy? As in, if your doctor is convinced through other means (as mine is), is that diagnosis official? Or does the "official-ness" somehow ride on the biopsy?

[ravenwoodglass]

Can a person be officially diagnosed by a doctor without the endoscopy? As in, if your doctor is convinced through other means (as mine is), is that diagnosis official? Or does the "official-ness" somehow ride on the biopsy?

Yes a doctor can diagnose without the biopsy. I had been gluten free for a couple months before I could get into the GI doctor after my allergist finally 'diagnosed me' through an elimination diet. The GI doctor of course demanded another gluten challenge before the biopsy 'to be on the safe side' LOL. Anyway the day of the biopsy I had reacted so violently to the second challenge that I was laying on the bathroom floor bleeding at the time I should have been on the table. I got my diagnosis but at a big cost.

We are hearing more and more often about doctors who will diagnose based on positive blood work and good results with the diet. Hopefully the blood testing will eventually get better in picking up all of us instead of just 80% and since there is a good risk of a false negative on biopsy the insistance on one will go down.

I'll never understand why insurance companies 'penalize' us for being celiac. I am healthier now than at any other time in my life. I don't even catch cold's anymore. Just think how much money would be saved if doctors here looked for celiac first rather than last.

[AlysounRI]

I am finally getting tested at the end of March (2010).

I know that I am gluten sensitive but I want to put a proper name on things that have plagued me for over 20 years now. I want "vindication" of sorts - cause I know it hasn't been in my head and it's a very, very real thing (the IBS, the exhaustion, the anemia, the aches, the fuzziness, the touch-me-and-I bruise stuff, the severe lack of energy, dairy intolerance, etc. etc.). It would explain so much of my early life and then the hardcore symptoms that showed up in my early 20s.

I also want to explore the osteo stuff and be able to see if it's worth me taking tax deductions or if I don't spend enough on supplies to make it viable (I might not since I am single and have no kids ...)

If it's not officially celiac, well, I can live with that. I did my little experiment and I know what I feel ON the stuff and OFF the stuff and I feel SO GOOD off it.

But really, I just want to put a name on the thing, christen it and drown it in the cistern so it never causes me trouble again

And, like, Kareng, I want to know if I am eligible to learn the double secret club handshake ...

~Allison

[macocha]

interesting. thanks. no clue on the tax stuff, so good to look into.