Grrr Gotta Do It

[Razzle Dazzle Brazell]

So my doctor is pushing me to get all these tests done. He is allowing me to start with the simple blood work for obvious allergens (wheat, corn...) and screening me for candida. Fun fun. If these don't show anything he wants me to go ahead and get the test done for celiac panel when i can afford it. Never maxed my cards before but this just might do it.

[GottaSki]

Good Morning Razzle Dazzle-

Your signature says you have been gluten-free since June. If you are not consuming gluten, your tests will likely be negative. One needs to consume gluten for several months for blood tests or endoscopic biopsy to reveal Celiac Disease.

Have any of your symptoms improved while on the gluten-free diet? If so, I'd say save your money and skip the bloodwork for now as you will likely be frustrated with the result.

Good Luck!

[Adalaide]

Unless you need your doctor to back you for something, do you really need a diagnosis? You say "when you can afford it" so that means that it could be a while. The longer you are gluten free, the better you are likely to feel. It also means that the time you spend eating gluten for the tests will also be more rough. Some people need a firm diagnosis for one reason or another, and maybe you do. But, do not let your doctor make that call for you. This is your decision to make. Remember, your are in control of your health. If you are comfortable off gluten, feel better and don't need a piece of paper that says celiac on it to live your life then it's okay to tell your doctor to shove off. Your health care should be a team effort and if your doctor isn't willing to be a team with you then you need a new doctor.

I'm going to reiterate this though because it can not be said enough. Do not waste your money on celiac testing if you are not have have not been consistently eating gluten every day for months. It will not be accurate and will be a waste of money. And remember, negative tests are not the same as not having celiac. In the end, if you feel better not eating something, DON'T EAT IT! (For some reason this is beyond rocket science to the medical community.)

[Razzle Dazzle Brazell]

Unless you need your doctor to back you for something, do you really need a diagnosis? You say "when you can afford it" so that means that it could be a while. The longer you are gluten free, the better you are likely to feel. It also means that the time you spend eating gluten for the tests will also be more rough. Some people need a firm diagnosis for one reason or another, and maybe you do. But, do not let your doctor make that call for you. This is your decision to make. Remember, your are in control of your health. If you are comfortable off gluten, feel better and don't need a piece of paper that says celiac on it to live your life then it's okay to tell your doctor to shove off. Your health care should be a team effort and if your doctor isn't willing to be a team with you then you need a new doctor.

I'm going to reiterate this though because it can not be said enough. Do not waste your money on celiac testing if you are not have have not been consistently eating gluten every day for months. It will not be accurate and will be a waste of money. And remember, negative tests are not the same as not having celiac. In the end, if you feel better not eating something, DON'T EAT IT! (For some reason this is beyond rocket science to the medical community.)

I guess my biggest thing is that it may be helpful to get a diagnosis as it may help me pay for these things the rest of my life and potentially qualify for tax breaks on my food and things. At my age it is not easy to afford all this food and I can't do sixty hour work weeks forever.

I am definitely not gonna eat gluten again. That is for sure! I would rather shoot myself. I mean that. I don't care what a doc tells me. I know what makes me feel like a dung beetles lunch.

Thx for your input. What about genetics testing? It could help my family out a lot as they I believe have many symptoms from bipolar to lymphoma.

[justlisa]

"Dung beetles lunch"... LMBO... I am sooo going to use that!

[Razzle Dazzle Brazell]

Good Morning Razzle Dazzle-

Your signature says you have been gluten-free since June. If you are not consuming gluten, your tests will likely be negative. One needs to consume gluten for several months for blood tests or endoscopic biopsy to reveal Celiac Disease.

Have any of your symptoms improved while on the gluten-free diet? If so, I'd say save your money and skip the bloodwork for now as you will likely be frustrated with the result.

Good Luck!

Yes I have improved a lot but I still have unexplained allergy symptoms like burning lips and tongue that are also inflamed. I bloat up sometimes it seems from nothing but it is no where near as bad as gluten. Just a little and mostly lower gut. I have seemed to notice corn bothered me but I may have missed the fact a lot of the foods I was reacting to had yeast as well. Chip ins popcorn chips white cheddar, soup broth I thought was yeast free and isn't, bobs red mill pizza crust mix, and others I can't think of now. We shall see.

I did think about the likeliness that it could come back negative despite obvious symptoms. I really don't want to waste money. I don't know if i will do anything although I may get genetic tests done.

[Adalaide]

Other than predisposition I'm not sure the genetic tests are good for much. Although if you show positive on genetic testing it could lead to having family tested. My GI wanted me to have genetic testing, more blood work and an additional endoscopy to diagnose me. (If he was so alarmed by the sight of my intestines that he felt I needed a biopsy I don't know why he didn't do all however many right then and there!) My family doctor looked at the existing biopsy results and was like, yup... digging for insurance money that doesn't exist. That's a positive diagnosis, stop eating gluten. Some of these doctors are nothing more than money makers.

Many (intelligent) doctors will write the required paper for the tax break on food based on the positive response to a gluten free diet. (Not sure where you live, I am basing this on what I know of US tax law which only requires a doctor say that you absolutely require a gluten free diet.) Keep in mind in the US that qualifying for these tax breaks is tricky at best and it isn't likely that most of us would get them. It would also require an extensive amount of record keeping and legwork on our part. Not saying don't do it, just pointing out that saving the money won't be easy. Then again, when is anything ever easy for us.

[Razzle Dazzle Brazell]

Other than predisposition I'm not sure the genetic tests are good for much. Although if you show positive on genetic testing it could lead to having family tested. My GI wanted me to have genetic testing, more blood work and an additional endoscopy to diagnose me. (If he was so alarmed by the sight of my intestines that he felt I needed a biopsy I don't know why he didn't do all however many right then and there!) My family doctor looked at the existing biopsy results and was like, yup... digging for insurance money that doesn't exist. That's a positive diagnosis, stop eating gluten. Some of these doctors are nothing more than money makers.

Many (intelligent) doctors will write the required paper for the tax break on food based on the positive response to a gluten free diet. (Not sure where you live, I am basing this on what I know of US tax law which only requires a doctor say that you absolutely require a gluten free diet.) Keep in mind in the US that qualifying for these tax breaks is tricky at best and it isn't likely that most of us would get them. It would also require an extensive amount of record keeping and legwork on our part. Not saying don't do it, just pointing out that saving the money won't be easy. Then again, when is anything ever easy for us.

That's the truth. I have kept all my receipts for everything I have had to buy, including kitchen supplies. I have receipts for all my out of pocket tests. I have receipts for much of the fresh food I have purchased. I have receipts for the work scrubs I had to buy after losing so much weight. I have a good tax guy who told me to keep up with it all and I sure am glad cause taxes don't pay for my healthcare and I am not responsible for the cost of healthcare just because I haven't bought into expensive insurance plans for my preexisting conditions.

I agree many are money makers but the guy I am seeing now has plenty of patients and not enough time and he is giving me discounts out of his own pocket that he could see someone else and get 25% more. A surgeon doing biopsies would be another thing. I don't trust them from what I have read about them on here. Your story is another example. There is no way on earth I could afford that or risk false results. I have talked to people this weekend and it just shows how broken our system is. People that are getting gov. help and trying to stand on their own feet are essentially told either lay down or do it all yourself. Shouldn't we be helping those who help themselves instead of giving handouts to those who refuse to? (Shaking My Head)

[Razzle Dazzle Brazell]

"Dung beetles lunch"... LMBO... I am sooo going to use that!

Hey I was just trying to keep the convo censored that's all lol

[GottaSki]

Yes I have improved a lot but I still have unexplained allergy symptoms like burning lips and tongue that are also inflamed. I bloat up sometimes it seems from nothing but it is no where near as bad as gluten. Just a little and mostly lower gut. I have seemed to notice corn bothered me but I may have missed the fact a lot of the foods I was reacting to had yeast as well. Chip ins popcorn chips white cheddar, soup broth I thought was yeast free and isn't, bobs red mill pizza crust mix, and others I can't think of now. We shall see.

I did think about the likeliness that it could come back negative despite obvious symptoms. I really don't want to waste money. I don't know if i will do anything although I may get genetic tests done.

Removing gluten often reveals other food intolerances - Grains, Dairy along with nightshades (tomato, peppers, potato, eggplant) are the most common. Tomatoes cause allergy type symptoms in my mouth.

A genetic test can be helpful in putting the pieces together, but I think the improvement of symptoms on diet is the strongest indicator and reason to stay gluten-free. I only got genetics done to help figure things out for my children.

ps...love the "dung beetle's lunch" - definitely stealing that one

[ravenwoodglass]

That's the truth. I have kept all my receipts for everything I have had to buy, including kitchen supplies. I have receipts for all my out of pocket tests. I have receipts for much of the fresh food I have purchased. I have receipts for the work scrubs I had to buy after losing so much weight. I have a good tax guy who told me to keep up with it all

You won't be able to deduct for the fresh food since that is not a specialty gluten free item. Be sure to note the price of the gluten form of the food you are buying gluten free replacements for as you can only deduct the difference in cost. Your medical expenses also must be more than 7.5% of your income, if I remember correctly. If you are going to deduct the cost of kitchen supplies like pots and pans it would be a good idea to have your doctor write a note that this was needed. Just be careful and make sure you have all the needed records as it can be tricky and it is you not your tax guy who would be responsible in an audit.

[Razzle Dazzle Brazell]

You won't be able to deduct for the fresh food since that is not a specialty gluten free item. Be sure to note the price of the gluten form of the food you are buying gluten free replacements for as you can only deduct the difference in cost. Your medical expenses also must be more than 7.5% of your income, if I remember correctly. If you are going to deduct the cost of kitchen supplies like pots and pans it would be a good idea to have your doctor write a note that this was needed. Just be careful and make sure you have all the needed records as it can be tricky and it is you not your tax guy who would be responsible in an audit.

Sounds worthless to me. That's dumb. I love my country but the gov. Is messed up in so many ways. I buy fresh veggies b/c it is cheaper out here than buying a bunch of specialty gluten-free already made foods which are risky with multiple food allergies. I pretty much gave up looking for stuff that didn't have all my potential irritants in it. It is what it is though. Thx for the info Raven.

[ravenwoodglass]

Sounds worthless to me. That's dumb. I love my country but the gov. Is messed up in so many ways. I buy fresh veggies b/c it is cheaper out here than buying a bunch of specialty gluten-free already made foods which are risky with multiple food allergies. I pretty much gave up looking for stuff that didn't have all my potential irritants in it. It is what it is though. Thx for the info Raven.

Yea it is worthless for most of us. Prices for stuff like gluten free bread are fortunately coming down as more of us are diagnosed. I volunteer at a place that gives out bread that is donated to us from the local stores. My Udi's bread is actually cheaper than many of the specialty wheat breads that come across the table. That can make it even trickier since we can only deduct the difference in cost not the whole cost. If you are recently diagnosed you do likely have a lot of medical bills that could be used though if they total more than the allowed percentage of your income. In my case though I was better off doing the standard deduction since that was higher because I don't have investments etc to write off.

[Razzle Dazzle Brazell]

Yea it is worthless for most of us. Prices for stuff like gluten free bread are fortunately coming down as more of us are diagnosed. I volunteer at a place that gives out bread that is donated to us from the local stores. My Udi's bread is actually cheaper than many of the specialty wheat breads that come across the table. That can make it even trickier since we can only deduct the difference in cost not the whole cost. If you are recently diagnosed you do likely have a lot of medical bills that could be used though if they total more than the allowed percentage of your income. In my case though I was better off doing the standard deduction since that was higher because I don't have investments etc to write off.

The only way to see any money would be to sue the FDA for not shedding light on the harms of petri dish food. Lol jk. I will be dreaming about that tonight though. I guess I will end up doing standard too. I don't have the time and energy to try and deal with all this. I know I have not spent five thousand in medical bills yet...

Anyway I hope these tests reveal some other allergies or whether I have candida. I wanna make sure I am not missing anything that's all.

[Razzle Dazzle Brazell]

Removing gluten often reveals other food intolerances - Grains, Dairy along with nightshades (tomato, peppers, potato, eggplant) are the most common. Tomatoes cause allergy type symptoms in my mouth.

A genetic test can be helpful in putting the pieces together, but I think the improvement of symptoms on diet is the strongest indicator and reason to stay gluten-free. I only got genetics done to help figure things out for my children.

ps...love the "dung beetle's lunch" - definitely stealing that one

Peppers? Hmm I add that to just about everything. Food for thought

tee hee I say the most paradoxical and stupidest things sometimes. Oh by the way and unfortunately "justlisa" has already claimed partial ownership of that catchy phrase and I cannot allow someone else to use it or it may undermind my rarity and popularity. Sorry!

[tom]

Peppers? Hmm I add that to just about everything. Food for thought

...

I think you're referring to the spice, whereas GottaSki was talking about Bell Peppers etc.

(Edit - hehe oops that's a lotta peppers .. ...was reminding me of having to try pepper-free, spice-free & how boring it was)

[Razzle Dazzle Brazell]

I think you're referring to the spice, whereas GottaSki was talking about Bell Peppers etc.

Both. I love bell peppers especially in soups, stir fries, omlettes and so on.

[squirmingitch]

Remember too that you would have to pay for the CPA to do the paperwork & filing for you to deduct this from your taxes. Just saying these things in case you have 2nd thoughts about it. PLUS, according to IrishHeart who knows someone who works for the IRS --- says you can BET you will be audited. She & her hubs had saved receipts & were going to do it & after finding that out said NOPE, not worth it. Plus you would have to have deductible expenses OVER your standard deduction in order to come out ahead.

Maybe try eliminating ALL the nightshades & see how you do. There are plenty on here who are nightshade intolerant. Start a new thread & they will answer you with all the 411.

[GottaSki]

Peppers? Hmm I add that to just about everything. Food for thought

tee hee I say the most paradoxical and stupidest things sometimes. Oh by the way and unfortunately "justlisa" has already claimed partial ownership of that catchy phrase and I cannot allow someone else to use it or it may undermind my rarity and popularity. Sorry!

After going gluten free I ate red, yellow and orange peppers nearly everyday - what easier way to add color? My easy lunch for the office was: Quinoa with tiny peas and bell pepper and tomato along with some peanuts to snack on. Trialed each on elimination diet which revealed:

peppers = muscle/joint aches and pain within 1/2 hour for at least 12 hours

tomoto = mouth numb tingly like I'd just had novacane at the dentist and more fun

peas = were like sleeping pills, couldn't keep my eyes open after I ate for at least several hours - same thing happened with beans.

peanuts = major emotional change -- was REALLY angry within the hour followed by uncontrolable tears at about two hours - crazy reaction -- not sure I'll ever even trial peanuts again once I get some other foods back.

It is no wonder I continued to have problems after removing gluten.

ALL peppers are not tolerable for me -- peppers in spice except black and white are nightshade (95% sure on that - I'm kinda foggy today - will have to check on that one)

PS...I have only used your catch phrase to family and friends...to those that laugh or commented I have given you full credit

[Razzle Dazzle Brazell]

Remember too that you would have to pay for the CPA to do the paperwork & filing for you to deduct this from your taxes. Just saying these things in case you have 2nd thoughts about it. PLUS, according to IrishHeart who knows someone who works for the IRS --- says you can BET you will be audited. She & her hubs had saved receipts & were going to do it & after finding that out said NOPE, not worth it. Plus you would have to have deductible expenses OVER your standard deduction in order to come out ahead.

Maybe try eliminating ALL the nightshades & see how you do. There are plenty on here who are nightshade intolerant. Start a new thread & they will answer you with all the 411.

Youre totally right about paying the CP so it wouldnt be worth it most def.

I will trial nightshade free and see what happens. It will be hardest for me to give up tomatoes. I love italian foods. No creamy sauce and no tomato sauce would be a bummer. I can try pesto. Besides i dont eat pasta that often. I just got to get through the homemade learning curve somehow while working 50+ hours a week. Hhh

After going gluten free I ate red, yellow and orange peppers nearly everyday - what easier way to add color? My easy lunch for the office was: Quinoa with tiny peas and bell pepper and tomato along with some peanuts to snack on. Trialed each on elimination diet which revealed:

peppers = muscle/joint aches and pain within 1/2 hour for at least 12 hours

tomoto = mouth numb tingly like I'd just had novacane at the dentist and more fun

peas = were like sleeping pills, couldn't keep my eyes open after I ate for at least several hours - same thing happened with beans.

peanuts = major emotional change -- was REALLY angry within the hour followed by uncontrolable tears at about two hours - crazy reaction -- not sure I'll ever even trial peanuts again once I get some other foods back.

It is no wonder I continued to have problems after removing gluten.

ALL peppers are not tolerable for me -- peppers in spice except black and white are nightshade (95% sure on that - I'm kinda foggy today - will have to check on that one)

PS...I have only used your catch phrase to family and friends...to those that laugh or commented I have given you full credit

Yeah i think with a wounded gut it makes since to be alkaline and limit acids anyway. I shall try. I long for the day i can begin adding to my diet instead of constantly subtracting.

PS...That is perfectly fine that you share it with friends and family as long as it is not for profiteering....ok ima stop about this now cause you aint a dead horse and i dont have enough energy to beat anything right now....i mean other than my own body so...

[squirmingitch]

To all who read this thread:You know what I love about Razzle? No matter how bad off this girl gets, no matter how many foods she has to eliminate, no matter how big her tongue swells or how bad it burns; THIS girl can still crack jokes & she always makes me laugh.

You just gotta love someone like that. Special.

[Razzle Dazzle Brazell]

Thx everyone! I have not been eating anything with peppers the past couple of days until today and now I am pretty bloated and feel kinda yucky. I feel tired and just not right. I am gonna stay away from them from now on. More experimentations will hopefully reveal whether it is the whole "nightshade" category. :-)

One more poece of the puzzle.