I'm Seeing The Gi Today For The First Time And I'm Petrified

[Phyllis28]

happygirl,

Thank you for sharing your story about ignorant docs. Those of us who have not had this experience will not be suprised if it happens to us in the future. It's a shame that they are out there and I am sorry you had to deal with them.

[Electra]

Angie,

Why make the effort to go on the diet and not be diligent or careful? The only way the diet can be accurate as a diagnostic tool is to do it correctly. Anything less can confuse yourself and any doctor who wishes to treat you. I know there are a lot of uneducated and inexperienced doctors out there who will take every opportunity to discredit what you have to say. The trick is to have an accurate diet response one way or the other. At some point you are going to have to get really sick in order to get a positive diagnosis if that is what you seek.(that is if you really do have Celiac). The other alternative is to get serious on the diet and see what happens.

I have been diligent and careful with the diet. I think you misunderstood what I was trying to say. When I first found out that my blood test results were positive, I attempted to be gluten free, but I had a hard time interpreting all the ingredients so I at some things I shouldn't have. Then after about two weeks I realized that I was still eating some foods that contained gluten so I cut those out and worked even harder to be careful. The last two weeks I have been completely gluten free except maybe for an accidental glutening, but then that could be something else like a sensitivity to dairy, soy, or corn.

There are "no" advantages of an official diagnosis in the US except piece of mind. Anything else including the cost of gluten free food and health insurance is a negative.

I completely disagree!! If I have a difinitive diagnosis and I get rushed to the hospital and am unconscious and they give me mediacation with gluten and I end up in a wheel chair or dying then we have the right to sue to recover damages. That certainly would never make up for it, but with no diagnosis I have NO medical rights if they accidentely gluten me and they don't even have to take me seriously if I don't have the diagnosis. I would never want to sue anyone, but if I am no longer able to care for my kids because I'm confined to a wheel chair then I would certaily need some sort of settlement to help with that (if it were from them giving me meds that I shouldn't have). I admit that is a far fetched thought and probably would never happen, but it could and if I'm not prepared then I could end up losing a heck of a lot.

The other benefits are tax deductions. You can deduct the difference of your food for this disease. I'm not sure I'm going to do that, but I do need the diagnosis for that to be an option.

There are a ton more benefits in my opinion, and most doctors that I know will be more accepting to testing your children repeatedly if you have a difinitive diagnosis.

If I get very sick and have a difinitive diagnosis then social security benefits would be easier to collect. Again I NEVER want to have to be faced with that, but should I happen to be one of the people that the diet does not work for then I would need to have that option available to me.

The MOST IMPORTANT benefit to me is that there will be ONE more person with a Celiac Disease diagnosis and the more of us that are diagnosed the better it's going to be for all of us. The more cases that are diagnosed only forces the medical community to start taking it seriously and get educated about it. We already see this happening with all the TV shows and news program lately doing specials on this disease. People are becomming aware and more are being diagnosed, so people ARE taking notice.

If you think that a positive diagnosis will guarantee any more support among family/friends/co-workers etc. then you may be in for a surprise. "The average person does not care about this one way or the other"! The reason is simple and that is because they like the average doctor do not understand it.

I don't think it will guarantee anything, but I have seen my family, friends and community start researing and learning about this disease since I found out my blood tests were positive. They have all been very supportive and careing and they completely understand what this disease could have done to me. I know mostly average people and they DO care about this and most are very interested in learning more. The average person is not what I am concerned with though. My family, friends and community are what matters to me, and they all seem to want to be as supportive as they can.

My positive diagnosis has resulted in exactly no monetary benefits but the fact that I feel good every day is all the reward I want. I may be wrong but it looks to me like the only way you will be willing to get serious about the diet is if you have that diagnosis. If this is true good luck and I hope you get it.

Tom

I am not looking for any kind of monitary benefits, obviously that is the furthest thing from my mind. Health is of utmost importance beause If I'm not healthy then my entire family suffers. I was already serious about the diet even before my diagnosis, but some of us know how the medical community works and we are trying to prepare for the things that may happen in the future that could end up hurting us in the long run.

For me it's about being thorough and making sure that we've left no stone unturned. I need to be prepared for whatever may come my way, and If I do not think about these things and make a plan of action then it will all fall apart on me when I least expect it. For me that's part of my job as a parent. I have to cover my basis just in case.

Maybe that's just my way of dealing with things, but that's my choice, and I'm happy with my decision.

[Nancym]

The other benefits are tax deductions. You can deduct the difference of your food for this disease. I'm not sure I'm going to do that, but I do need the diagnosis for that to be an option.

Just for the record, you have to have expenses that are greater than 7.5% of your AGI and you can only deduct the difference between the gluten-free food and the non-gluten-free food you would have eaten. The amount of bookkeeping to actually take the deduction, for probably the amount of return, is absurd.

[Electra]

Just for the record, you have to have expenses that are greater than 7.5% of your AGI and you can only deduct the difference between the gluten-free food and the non-gluten-free food you would have eaten. The amount of bookkeeping to actually take the deduction, for probably the amount of return, is absurd.

Well for the average person it may not be worth it but you would be surprised at how much it would add up too. I already have to keep track of all my food because a portion of it is deductable already for my home business, so that's no big deal to me.

[Nancym]

Well cool, if you're doing the bookkeeping anyway you might as well take the deduction! I still have nightmares of preparing my taxes when I was self-employed.

[Judyin Philly]

thanks so much for sharing your info and so glad you found a dr. who listens.

Please keep us posted on the biop results.

judy