Tuesday, February 28, 2012

Celiac Disease

I think I have celiac disease. I've thought it for a very long time now. I've been tested and it comes back negative, but I know false negatives happen. I don't want celiac disease. I don't want to work that hard to eat, but I'm so tired and I hurt.

I know I have celiac disease.

There. I've said it. I'm certain I have celiac disease.

It's really funny to type these words. Ironic almost. I'm coming to terms with what I have known in my heart for 10 years. I have celiac disease. Yet, I'm eating leftover pasta. Right now, I'm eating leftover pasta. I know I will feel ill in a couple of hours from eating this. I may even have worse pain this evening, but I'm eating it anyway. 

I know, you are thinking "oh, she is just jumping on the gluten-free bandwagon that seems so popular these days." Let me say this unequivocally: I DO NOT WANT TO BE GLUTEN FREE! The time, the energy, the cost, the hassle is not for me. I want easy. I want quick. I want affordable. Being gluten free is none of the above.

Moreover, I am decidedly anti-fad. I try not to do what everyone else is doing simply because everyone else is doing it. Sometimes, it happens. For instance, I love Pinterest. But, I didn't want to join pinterest for a long time simply because everyone else was doing it. Same thing with the Facebook, which I now love. I resisted for years. Anyway, please know going gluten free does not sound fun to me in any way, shape, or form.

So why would I think I have celiac sprue, a horrible disease that makes you into a label reader from hell and that prevents you from eating pizza, pasta, cake, beer, and everything else lovely to eat in this world?  Simple. I have lots of the symptoms that have gone undiagnosed since 1996, despite massive amounts of testing for every other disease in the book. And many of my family members have it. And yes, celiac disease is familial.

The first of my aunts to be diagnosed was diagnosed about ten years ago. She has been the strongest advocate that I get tested and re-tested. She has also known all of the pain I have suffered over the years that could never be explained. Yet, I ignored her. I have learned to live with chronic pain, so I didn't think all of the hassle was worth it. Yes, there are some days I can't walk, but I've managed to work through the pain for over 15 years.

But lately, I've been feeling more symptoms. I am keenly aware that feel ill after a snack of pretzels. And I'm lethargic, despite sleep (and it is more than late nights with DQ). I know I have to do something about this, but I want a definitive diagnosis. I don't want to go gluten free and then always wonder in the back of my mind if I really need to be. I know I will wonder and it will drive me batty.  I also want a doctor who believes me when I say I have celiac. In the past, the GI who did my testing didn't believe it was possible because I am fat (celiac sprue used to be called the wasting disease because your body can't absorb nutrients). But celiacs aren't necessarily thin.

So, at my check up with my primary care doctor next week, I am going to discuss my concerns. I'm going to explain what I am doing. I am going to get a referral to a different GI doc. I'm going to be properly tested, but before I go in, I'm going to eat lots of gluten so that my villi will definitely show what I know in my heart is true.  I'm telling this to the world so that I can get support. I don't want to go gluten free and left on my own, I won't. But if you all know, perhaps I'll have a reason to stick to my guns this time. I want to get healthy for my kids. I want to be around for a very long time. If I have celiac and I leave it untreated, I am only shortening my life. I don't want to do that.


  1. Absolutely do something! Get a good internist who will explore every option. If you still test negative, go gluten free any way. I don't know how long you'd have to do this to make a determination. I don't know the expense or the trouble. I'd think it would all be worth it to feel well.

    Put me down as your #1 supporter.


  2. You may test negative, but still have a gluten sensitivity. I know, totally ridiculous. If you have something, you should be able to take a test and know for sure. If only it were that simple! After this round of tests (and yes, you have to keep eating the gluten through the tests to make sure it shows up) even if they are negative, take going GF for trial run. If that IS your problem, you know right away. I'm talking within a couple of weeks you will be feeling MUCH better. That's how I did it. I was SO SICK for SO LONG!! I have *never* been a diet person, and I have a tendency to cheat on my GF diet if I feel like it. The upside is that if you are gluten free long enough, your villi or cilli or whatever will grow back, and then a *tiny* cheat here and there will be something that you can deal with. BTW I will deny ever having said that! LOL ;) Any gluten is bad gluten! If you do go the GF route, I can recommend some foods that are better than some of the nasty stuff out there. Being GF sucks ass, no doubt. But there are lots of us GFers out here if you need someone to complain to about how terrible it is.

  3. If you feel up to continue eating gluten, do it and get tested. Then you should definitely cut out gluten and see what happens! It should be almost immediate, although depending on how long you've been having symptoms, recovery times vary.

    To put a positive spin on it... if you are having these health problems and it *is* gluten-related, you have a solution. I have Celiac disease and once I realized that my many health problems were all a result of gluten consumption, it suddenly became a joy not to eat gluten anymore.

    I write a blog about food in the Bay Area, and include some recipes (plus restaurant reviews, if you're ever in the Bay Area!) I am actually very grateful for my diagnosis because it has helped me engage with what I eat better, and I'm so much healthier now!

    If you're interested, check out my blog: www.spinningspoons.com.

    Best of luck - feel free to drop me a note or comment on my blog if you have any questions or need some positive support!

  4. I went gluten-free for a while because I was trying to follow an anti-inflammatory diet (when I was going through infertility treatments). I don't know that I have a gluten sensitivity/celiac, but what I can say is that I felt better than I ever felt. (and I got pregnant for the first time ever). It was hard at first, but it definitely got easier.

    Good luck to you...I'll be pulling for you and sending gluten-free recipes your way!

  5. I'm really sorry you're feeling left feeling like you have to prove something to me. I believe the words coming out of your mouth more than anyone else I can think of.


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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