Tuesday, March 13, 2012


My initial blood test for celiac came back negative. I'm not really surprised. I've had symptoms since I was in high school and been tested previously and they've come back negative (even biopsies). I'm waiting to hear back from my primary care physician to see what she wants me to do next--different blood test, biopsy,  or simply go gluten-free. (I understand that some of the tests are not accurate when a person has a weak immune system, which I have. I'm not sure if my doctor took that into consideration when she ordered the test.)

I so wanted a definitive diagnosis. I know if I go gluten-free and feel better, that is pretty good proof. But I also know that if I go gluten-free and feel better, I will never have an official diagnosis because you have to eat gluten for any test to "work".

I mentioned to a friend that I was certain I have celiac and would be going gluten-free once the testing was complete (no matter the outcome). Her response was exactly why I want a diagnosis. She told me "It's bad to go gluten-free if you don't have a diagnosis." I don't know the truth of that statement, but it is exactly what I will face for the rest of my life--from friends, family, colleagues, insurance companies. If you don't have a diagnosis, it must be in your head. And in the my head, I will wonder, even if the pain I've lived with for years finally goes away.

I know I shouldn't let other people's thoughts bother me, but I know it will cause headaches if I don't have a real diagnosis. I just want something to be easy for once (not that having to go gluten-free would be easy, but it'd be easier with a diagnosis). What's even more frustrating is that I've been living with pain for so long that people don't believe me any more. Like because I learned that I couldn't just lay in bed all of the time (like I did when I was first trying to get diagnosed), it must not be real. Yet, I have had problems for years that I've pushed aside and now that I want to put my health front and center, I have people believing I'm loony.

I stopped hoping for a diagnosis and "cure" to my pain many, many years ago. But, for some reason, I let myself hope I'd have an answer this time. I am ready to do what's necessary. But now, I don't know what it means.


  1. Some people will never test positive for Celiac disease, but DO have a gluten sensitivity and going gluten free will help. I think maybe your friend misspoke. It's not that it's bad to go gluten free without a diagnosis. It's bad to go gluten free if there is no need to. Gluten free products are more starchy and generally less nutritious than their gluten-containing counterparts. Going gluten free when there is no good reason to do so is not a healthy thing to do. That said, after everything is said and done testing wise, if you still don't have an answer to your problem, going gluten free for a few weeks will tell you if gluten sensitivity is your problem. If you feel better, then keep doing it. If there's no change, go back to eating regular foods. A few weeks is all that it will take to figure it out.

  2.  Thank you. I am definitely going to follow your advice!

  3. I would do the gluten-free for a week or two and see if you feel better.  I can't imagine that it would hurt you...heck I have gone on some crazy diets in the past that I am sure were much worse for me medically than a gluten-free diet.  I do have a friend that thought she had celiac and also tested negative.  She kept going back and finally talked to a nutritionist and found out she has candida (which I don't know much about) and has changed her diet and is taking vitamins for...she is actually happy because she had a really hard time with the gluten-free diet.  I honestly think gluten-free would take every ounce of willpower for me to do...I sooooo love my bread and processed food.

    Good luck and remember...it is your body and you know what is best!

  4. Also, what's going on with the new commenting system? I couldn't believe that my blogger TMM login didn't work anymore!

  5.  The commenting system is through disqus and you can set up an account through discuss and even post anonymously. I wanted to be able to reply in the comments section, but blogger wouldn't let me do that. If you know of another way, let me know!

  6. Thank you, Paula! I know gluten-free would be really hard for me too, even though I have great resources in my family and my mom is a pro at gluten-free cooking. I'm definitely going to try going gluten-free once my doctor officially says I'm past the testing phase.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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