Comments on: A Diagnosis, at What Cost? http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/ A personal finance blog for career minded women with small budgets and big dreams. Tue, 08 May 2012 14:29:33 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Melinda http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20507 Melinda Wed, 25 Apr 2012 17:04:13 +0000 http://thebudgetingbabe.com/?p=1590#comment-20507 I also "probably" have Celiac but I have no desire to undergo a procedure to find out. My suggestion - go gluten free and see if it makes a difference - eat according to how you want to feel. If knowing that eating will impact you negatively is enough (which it is for me) then skip the diagnosis. Do you I slip up? Absolutely - sometimes I want pasta and I make it. Pizza - on occasion. I try to focus on the things I love that I can eat - enchiladas, a great steak, ice cream. I also “probably” have Celiac but I have no desire to undergo a procedure to find out. My suggestion – go gluten free and see if it makes a difference – eat according to how you want to feel. If knowing that eating will impact you negatively is enough (which it is for me) then skip the diagnosis. Do you I slip up? Absolutely – sometimes I want pasta and I make it. Pizza – on occasion. I try to focus on the things I love that I can eat – enchiladas, a great steak, ice cream.

]]> By: Missie http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20498 Missie Sun, 22 Apr 2012 00:41:49 +0000 http://thebudgetingbabe.com/?p=1590#comment-20498 Good luck, Nicole! And yes, if you're not sure and feel concern, seek out more opinions from those you trust. Good luck, Nicole! And yes, if you’re not sure and feel concern, seek out more opinions from those you trust.

]]> By: The Budgeting Babe http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20495 The Budgeting Babe Fri, 20 Apr 2012 20:29:37 +0000 http://thebudgetingbabe.com/?p=1590#comment-20495 Missie - I'm kind of excited to get the testing phase over with and just get COOKING! Thanks for the recipes. I decided to just "ask the expert." I sent an email to the GI Celiac specialist asking her if it's worth either of our time to come in for a consult. I briefly mentioned my two negative tests, and the family history part (she has treated some of my family members). So, before I do anything I will leave it up to her to decide if she wants to see me. I am no expert on gluten or celiac, so even though I was definitely leaning towards "NO TEST" I don't really trust my gut on that. Heh heh. We'll see what she says. Missie – I’m kind of excited to get the testing phase over with and just get COOKING! Thanks for the recipes.

I decided to just “ask the expert.” I sent an email to the GI Celiac specialist asking her if it’s worth either of our time to come in for a consult. I briefly mentioned my two negative tests, and the family history part (she has treated some of my family members). So, before I do anything I will leave it up to her to decide if she wants to see me. I am no expert on gluten or celiac, so even though I was definitely leaning towards “NO TEST” I don’t really trust my gut on that. Heh heh. We’ll see what she says.

]]> By: Missie http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20472 Missie Wed, 18 Apr 2012 19:52:52 +0000 http://thebudgetingbabe.com/?p=1590#comment-20472 Well, as others have said, and has your doctor has said, it's really up to you. The point is, though, that it's not going to change anything for you -- you still KNOW that you feel better gluten-free/reduced-gluten (just as I, a hypoglycemic, KNOW I feel and do way better balancing my carbs and cutting out concentrated sugars entirely, regardless of the source of those sugars -- for example, I can eat an apple between protein-rich meals or with a piece of cheese or something, but an orange -- which is VERY sweet -- or any kind of fruit juice is a no-no). Myself, I avoid invasive tests whenever possible. Whether you get a confirmed diagnosis or not, you're still going to do what makes you feel better, which is no or reduced-gluten. And regardless of whether you have confirmed celiac disease or no, like Kizz (and like what most doctors will tell you, I betcha), I'm betting an occasional pizza slice or beer isn't going to shorten your life or reduce the long-term quality of your life. And were I you, too, I'd search for a gluten-free pizza dough recipe and then you can make your own pizza! ;-) Matter of fact, this lady has several gluten-free suggestions for flour: http://glutenfreegoddess.blogspot.com/2007/01/cooking-baking-gluten-free-tips-for.html And then you could use one of her substitutes to make my easy-peasy to work-with pizza dough that uses (gluten-free!)instant potatoes: http://thatsmellsyummy.wordpress.com/2011/05/03/rainy-days-and-mondays/ Go. Eat. Be happy. Be healthy. :-) Well, as others have said, and has your doctor has said, it’s really up to you. The point is, though, that it’s not going to change anything for you — you still KNOW that you feel better gluten-free/reduced-gluten (just as I, a hypoglycemic, KNOW I feel and do way better balancing my carbs and cutting out concentrated sugars entirely, regardless of the source of those sugars — for example, I can eat an apple between protein-rich meals or with a piece of cheese or something, but an orange — which is VERY sweet — or any kind of fruit juice is a no-no).

Myself, I avoid invasive tests whenever possible. Whether you get a confirmed diagnosis or not, you’re still going to do what makes you feel better, which is no or reduced-gluten. And regardless of whether you have confirmed celiac disease or no, like Kizz (and like what most doctors will tell you, I betcha), I’m betting an occasional pizza slice or beer isn’t going to shorten your life or reduce the long-term quality of your life.

And were I you, too, I’d search for a gluten-free pizza dough recipe and then you can make your own pizza! ;-)

Matter of fact, this lady has several gluten-free suggestions for flour:

http://glutenfreegoddess.blogspot.com/2007/01/cooking-baking-gluten-free-tips-for.html

And then you could use one of her substitutes to make my easy-peasy to work-with pizza dough that uses (gluten-free!)instant potatoes:

http://thatsmellsyummy.wordpress.com/2011/05/03/rainy-days-and-mondays/

Go. Eat. Be happy. Be healthy. :-)

]]> By: The Budgeting Babe http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20471 The Budgeting Babe Wed, 18 Apr 2012 18:11:26 +0000 http://thebudgetingbabe.com/?p=1590#comment-20471 That's pretty much what my dad said, Kizz. I was totally leaning towards not seeing the specialist at all, but then I got this newsletter in my inbox today featuring the very specialist I was planning to see, and it stressed the importance of monitoring and follow up for celiac: http://www.cureceliacdisease.org/wp-content/uploads/2012/04/CdC_Newsletter_0412_v3.pdf Rationally, I still think it makes sense to stop testing, but there are a lot of unknowns and if I stop eating gluten now and then need a diagnosis later for whatever reason, it becomes more difficult to catch the longer you're off gluten. That’s pretty much what my dad said, Kizz. I was totally leaning towards not seeing the specialist at all, but then I got this newsletter in my inbox today featuring the very specialist I was planning to see, and it stressed the importance of monitoring and follow up for celiac:
http://www.cureceliacdisease.org/wp-content/uploads/2012/04/CdC_Newsletter_0412_v3.pdf

Rationally, I still think it makes sense to stop testing, but there are a lot of unknowns and if I stop eating gluten now and then need a diagnosis later for whatever reason, it becomes more difficult to catch the longer you’re off gluten.

]]> By: Kizz http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20470 Kizz Wed, 18 Apr 2012 17:40:28 +0000 http://thebudgetingbabe.com/?p=1590#comment-20470 I can give you a hundred reasons to go either way. I just have a question. Given that you've had these problems since HS and have only now gotten a useful diagnosis, will you really be risking intestinal damage with the very occasional beer or slice? I would think that, even that, with or without diagnosis wouldn't hurt you any more than you know the consequences now. What do you think? I can give you a hundred reasons to go either way. I just have a question. Given that you’ve had these problems since HS and have only now gotten a useful diagnosis, will you really be risking intestinal damage with the very occasional beer or slice? I would think that, even that, with or without diagnosis wouldn’t hurt you any more than you know the consequences now. What do you think?

]]> By: The Budgeting Babe http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20469 The Budgeting Babe Wed, 18 Apr 2012 14:23:31 +0000 http://thebudgetingbabe.com/?p=1590#comment-20469 Allison - Thanks for the input. It has crossed my mind that having the confirmed medical record would be better than not having it, especially if I ever have kids. Allison – Thanks for the input. It has crossed my mind that having the confirmed medical record would be better than not having it, especially if I ever have kids.

]]> By: The Budgeting Babe http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20468 The Budgeting Babe Wed, 18 Apr 2012 14:22:45 +0000 http://thebudgetingbabe.com/?p=1590#comment-20468 OMG Sarah I totally know what you mean about "feeling like a tin can needing oil."And yes, the skin thing/eczema, too! I could not believe the difference in how I felt when I went off gluten for 30 days. I'm back on it now (have been for about a month) in preparation for testing and I feel so tired. I'm having a hard time waking up in the morning and feel like I could drink coffee all day long and still be tired. I love Portland! I need to go back soon for a visit. I didn't know they were making cider with hops... can you recommend a good one for me? Thanks so much for sharing you story. Every little bit of info helps. OMG Sarah I totally know what you mean about “feeling like a tin can needing oil.”And yes, the skin thing/eczema, too! I could not believe the difference in how I felt when I went off gluten for 30 days. I’m back on it now (have been for about a month) in preparation for testing and I feel so tired. I’m having a hard time waking up in the morning and feel like I could drink coffee all day long and still be tired.

I love Portland! I need to go back soon for a visit. I didn’t know they were making cider with hops… can you recommend a good one for me?

Thanks so much for sharing you story. Every little bit of info helps.

]]> By: Allison http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20467 Allison Wed, 18 Apr 2012 13:33:37 +0000 http://thebudgetingbabe.com/?p=1590#comment-20467 Wow Nicole, what a tough situation. First, I agree you are your own best advocate and I think you are smart at being proactive and pushing back against the doctors when they try to blow you off. Secondly, it might be worth pursuing a clear and confirmed diagnosis, because ultimately, knowledge will give you the guidance and records for the future. Plus, later down the line, you will have this recoded medical history so that in the future you might find an amazing doctor who will have these records to go on. Wow Nicole, what a tough situation.
First, I agree you are your own best advocate and I think you are smart at being proactive and pushing back against the doctors when they try to blow you off.
Secondly, it might be worth pursuing a clear and confirmed diagnosis, because ultimately, knowledge will give you the guidance and records for the future.
Plus, later down the line, you will have this recoded medical history so that in the future you might find an amazing doctor who will have these records to go on.

]]> By: Sara http://thebudgetingbabe.com/2012/04/17/a-diagnosis-at-what-cost/#comment-20466 Sara Wed, 18 Apr 2012 01:38:29 +0000 http://thebudgetingbabe.com/?p=1590#comment-20466 Wow! I don't usually comment, and I'm on my phone right now typing om the tiny screen no less, but I went through the exact same thing with my doctor. I did the blood test and just to be clear, it isn't negative, it can only be positive or inconclusive. Mine was inconclusive, too. It was for other family members as well. They had the more invasive procedure done and was positive for celiac. Here's why I didn't: 1) you have to go back on wheat and they actually don't know for how long to be sure it has taken effect. 2) even if I went back on wheat and did the endoscopy, they still might not grab the right group of damaged cells and get the wing result 3) I'm getting better at being gluten free, and the more I cut out out (i.e. not eat things with "natural flavors" listed as an ingredient), I realize how amazing I really can feel. When I've been gluten-ed I have all sorts of seemingly unrelated issues, like waking up feeling like a tin man needing oil, getting minor eczema or feeling super sensitive to touch (like my shirt tag is bothering me). I generally feel like crap and it's stuff I never even realized I was putting up with every day. It's just my two cents, but if you go gluten free as though you had celiac, I'm guessing you wouldn't miss it. I love beer, I'm from Portland (amazing micro brews) but even beer is slowly coming around with gluten free options. Cider made with hops is pretty damn good, btw. I have found some favorite g-f pizza places, too. The thought of what makes me sick, and I haven't had a voodoo donut, but I regret nothing! :) Wow! I don’t usually comment, and I’m on my phone right now typing om the tiny screen no less, but I went through the exact same thing with my doctor. I did the blood test and just to be clear, it isn’t negative, it can only be positive or inconclusive. Mine was inconclusive, too. It was for other family members as well. They had the more invasive procedure done and was positive for celiac. Here’s why I didn’t: 1) you have to go back on wheat and they actually don’t know for how long to be sure it has taken effect. 2) even if I went back on wheat and did the endoscopy, they still might not grab the right group of damaged cells and get the wing result 3) I’m getting better at being gluten free, and the more I cut out out (i.e. not eat things with “natural flavors” listed as an ingredient), I realize how amazing I really can feel. When I’ve been gluten-ed I have all sorts of seemingly unrelated issues, like waking up feeling like a tin man needing oil, getting minor eczema or feeling super sensitive to touch (like my shirt tag is bothering me). I generally feel like crap and it’s stuff I never even realized I was putting up with every day.

It’s just my two cents, but if you go gluten free as though you had celiac, I’m guessing you wouldn’t miss it. I love beer, I’m from Portland (amazing micro brews) but even beer is slowly coming around with gluten free options. Cider made with hops is pretty damn good, btw. I have found some favorite g-f pizza places, too. The thought of what makes me sick, and I haven’t had a voodoo donut, but I regret nothing! :)

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