A Diagnosis, at What Cost?

Posted on April 17, 2012 10 Comments

I *might* have celiac disease.

I am definitely sensitive to gluten.

The treatment for both of these conditions is a gluten-free diet. The diagnosis for celiac requires a specialist visit and an endoscopy, an invasive procedure that requires anesthesia. My physician says that based on my family history, she doesn’t need a celiac disease diagnosis to tell me to go gluten free, I just should do it. However, she said if I need to know whether I am celiac or not, I could see a specialist. But the end result would not be different; I would need to avoid gluten either way.

What a pickle.

After years of digestive testing that started in high school, it’s come to this.  How much do I want to know? How much do I need to know? What will a diagnosis do for me that a probable cause will not?   

I go back and forth. The reason for my current dilemma is this: in November a blood test for celiac came back negative. In February I went gluten-free for nearly 30 days, with positive results. In March, I added gluten back in, with very negative results. I took another blood test yesterday, but since the first came back negative and the tests are notoriously fickle, I don’t expect to learn much from it. Celiacs will tell you a diagnosis with endoscopy is necessary, pursue it. Non-celiacs say to leave it at gluten-sensitive and move on. The question is, can I?

After years of visits to different GI docs and primary care visits for various pains in the abdomen, and a supremely unsatisfying “irritable bowel syndrome” diagnosis several years ago (which is basically the equivalent of a shoulder shrug and a pat on the back), plus many other seemingly unrelated irritations like migraines and ovarian cysts, I would like to know.

I would like to know for sure whether this is “all in my head” or if something truly is happening. I would like to know if I can have a beer and a pizza every once in a while and risk only a headache and some discomfort, vs. risking intestinal damage. I would like to know.

Still.

If one physician tells you that he or she need doesn’t a confirmed diagnosis to start the treatment, why pursue the diagnosis? Why go under anesthesia, at a cost of (I believe) about $1,000 plus the specialist visit?

Objectively, I tell myself that it makes more sense to just consider gluten off-limits for the most part and proceed with life. The end result will be the same. Plus, working in academic medicine, I believe that in five or 10 years there will likely be another, better, less invasive test that is cheaper and more accurate.

Still.

My mind has questions. It wants confirmation, validation, something.

Anything.

I know that as a patient, I am my own best advocate. But then I go back to the doctor’s question: “How will the endoscopy make anything different for you? If it comes back negative, won’t you still go gluten free?”  Yes, I will. The end result will be the same. It’s a good question to ask, and is probably along the advice that many doctors would give, especially as physicians are criticized in the media for ordering unnecessary tests, spending too much money, and driving up the costs of health care.

To her credit, she left the discussion somewhat open ended, “It just depends on whether or not you need to know. I would need to know. But everyone is different. It’s up to you. The results will be the same.”

I have the number for a specialist. I’m not sure whether I will use it.

What a pickle.

Category: Life
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Comments

10 Responses to “A Diagnosis, at What Cost?”

  1. Sara
    April 17th, 2012 @ 8:38 pm

    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! :)

  2. Allison
    April 18th, 2012 @ 8:33 am

    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.

  3. The Budgeting Babe
    April 18th, 2012 @ 9:22 am

    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.

  4. The Budgeting Babe
    April 18th, 2012 @ 9:23 am

    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.

  5. Kizz
    April 18th, 2012 @ 12:40 pm

    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?

  6. The Budgeting Babe
    April 18th, 2012 @ 1:11 pm

    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.

  7. Missie
    April 18th, 2012 @ 2:52 pm

    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. :-)

  8. The Budgeting Babe
    April 20th, 2012 @ 3:29 pm

    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.

  9. Missie
    April 21st, 2012 @ 7:41 pm

    Good luck, Nicole! And yes, if you’re not sure and feel concern, seek out more opinions from those you trust.

  10. Melinda
    April 25th, 2012 @ 12:04 pm

    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.

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