Friday, September 28, 2012

Why I May Never Be Tested for Celiac

I got wind of a test that could detect Celiac without a person needing gluten in their system. However, I have not been able to confirm this, which is disappointing. The very, very last thing I want to do is go on a gluten-challenge, ingesting loads of something I’m pretty sure has spent my whole life trying to kill me. Now that I have more information, I don’t believe I will.

Here’s myCeliac tale: I have had Hashimoto’s disease, a thyroid disorder, since I was 9. I developed endometriosis sometime in my teen years and it was discovered in my twenties. Also discovered in my twenties was the fact that my bones are deteriorating at a very fast rate. All awesome news! (I hope you read sarcasm well). All of the doctors I went to for diagnosis and management of these issues were nice people and decent doctors, but not one bothered to ask why I kept developing problems. In their minds, thyroid and uterus and bones were all separate issues that needed to be medicated into submission. How could those random organs be related? Holistic approaches in medicine? What?

Add to this I was often mistaken for a bulimic in school because of my ability to eat anything and race to the bathroom within five minutes to expel it from my system. Mind you, I didn’t do it on purpose. Intestinal issues also found me sometime in my teen years, so I got another drug: Prevacid.

By the time Wren was diagnosed with Celiac, every doctor, nutritionist, naturopath, person in the grocery store who knew there was a genetic connection pointed to me. It makes pretty logical sense seeing how every one of the above issues are calling cards for Celiac. Wren and I don’t half-way do anything; if we’re going to have health problems, we burn down the whole place. No silent symptoms for us.

Dennis was tested first basically because I told him he was going to be, and he picks his battles. My reason was sound: I would happily live like a Celiac because I felt so much stinking better! Cramps from endometriosis? No, though having children probably helped that one. Thyroid out of whack? No, and my medication has not needed to be tampered with since the gluten-free diet. Bone deterioration? I haven’t had them tested yet, but I haven’t broken any hips. Frequent bulimic-like potty episodes? Way, way down from what they were. And now if food makes me sick, I know it’s because I ate rice, or slipped in some butter, or I ate too many grapes in one sitting (like two pounds). I am not reactive to every food I put in my body because I’m not eating gluten, and my gut is starting to heal. I don’t cry because I can’t sit through an entire movie due to my constant need to be sick. I go weeks without potty episodes (then I get cocky and eat two pounds of grapes). I don’t need a test result to prove gluten made me feel like death

Dennis was living gluten-free at home after Wren was diagnosed, but he would indulge at work away from Wren if the opportunity presented itself. I told him to get tested because that was a very bad idea if he had Celiac, and we needed to know. I think he agreed because he thought he’d be able to eat burritos at Chuy’s in peace once he offered tangible evidence that he was in the clear.

Except he wasn’t in the clear. He has Celiac. It will be a year Sunday since he was diagnosed.

I know enough about science or math or stats or something to know that him having Celiac doesn’t mean I don’t. One doesn’t change the other. However, I still couldn’t get tested because I was nursing Sammy, and he had already started displaying Celiac-like symptoms. Gluten travels through breast milk. Besides, what does it matter? I want to live this way. I take all the precautions with cross-contamination as the rest of my family.

Only, a strange thing started happening after Dennis got diagnosed. People I knew started grabbing me on the sly making me aware of where the gluten-filled snacks were “just in case you can slip away from the family and grab one”. When I continued my diligence in not being cross-contaminated, I received strange looks. The confusion apparently stems from the fact that I haven’t been “officially” diagnosed. Being healthy without the junk in my body is apparently not proof positive. Invasive medical procedures must be performed!

I started to cave, mainly because I wanted to stop being viewed as eccentric and just viewed as someone trying to manage my health. But then I started research on Celiac testing. An article I found from a company trying to offer a better Celiac test helped confirm my decision to not get tested. Here’s the link, and here’s the jest of it if you don’t want to read the whole thing: The initial blood test that leads doctors to decide whether or not to use endoscopy to further diagnose Celiac is wrong about 70% OF THE TIME!

The long and short of it is the blood test really only confirms Celiac if it has majorly destroyed your gut. You can have Celiac, a fairly hanging in there gut, and a liver that’s about to pass out due to Celiac, and you will not get enough “indicators” for the doctor to refer you for further testing. Or your mind could be attacked. Or your joints. All common with Celiac. That’s why the endoscopy is the “gold standard”. Yeah, when your fall back choice has a 70% failure rate, you need a gold standard. But even the gold standard can be inaccurate if your gut is not leveled enough or if your endoscoper(is that a word?) doesn’t know how to find Celiac. If your gut is not the primary target, you could still be misdiagnosed. Too bad for all those people who have non-alcohol related cirrhosis, multiple sclerosis, rheumatoid arthritis, and a whole other host of issues related to untreated Celiac. Their bodies weren’t attacked properly for the test, and we are just now coming up with new ways to test them.

The blood test diagnoses very accurately the Wrens of the world whose guts looked like a place an atomic bomb landed twice before a tsunami came in to smash the rest. Wren had, and still has to some extent, damage to many organs in her body due to Celiac, but her gut was undeniably leveled. Wren got a gold star on the blood test! Dennis had to have the endoscopy for confirmation, and even the GI said he would not have referred D for an endoscopy based on his blood work. He would have been one of the 70%. Thankfully, we listened to the chiropractor who did refer him after seeing his blood test. After D was diagnosed, the GI basically said, “my bad”. I think he really did feel pretty bad.

So, no, I am not shoving loads of poison into my temple with the express purpose of destroying my intestinal lining enough to get the gold star on the blood test so I can have a tube rammed down my throat to be told what God has given me the sense to figure out on my own: I don't react well to gluten. I’m somewhat competitive (actually I’m not, I’m too lazy for that), but I am not competing for the Dumbest Person on the Planet Award. However, I do HIGHLY, HIGHLY recommend you get tested if: you are still eating gluten and suspect you might have Celiac (keep eating the gluten for now, push for the endoscopy if there are any indicators in your blood work, and find someone who knows what they’re doing); you think you have Celiac and the idea of avoiding gluten or even crumbs of gluten seems impossible to you without a test result (follow same parenthesis rules from above); there is a family history, even if you don’t have symptoms (eat the gluten, follow rules from above). Also, consider Cyrex, the link above, for testing. The test looks to be pretty sensitive, though it’s still in the early stages, and I don’t know what insurance will have to say when you want Cyrex instead. I would go with Cyrex if I was going to do this (but I'm not because it looks like you still have to gluten up for the test) and just ignore my insurance company  My thoughts on insurance companies are for a whole different day.

As for me, I'm going to embrace the idea that others think I'm an eccentric weirdo. I will continue living life as a Celiac sans the piece of paper as proof.  I may also stop showering and start wearing long evening gown gloves all the time. Now that I'm not stuck in the bathroom for hours a day, I have time to really mess with people.


  1. I remember when my mom connected us a few days after your daughter was diagnosed, and we talked on the phone for a few hours. It sounds like y'all have progressed so much since then and learned a lot. Going gluten-free is such a hard transition, but it's so good not to be sick.

    We have friends here in OKC who are both gluten-free and their kids are all gluten free too.

  2. I remember! I still have the great information you sent us. It's been trial by fire, but I think we've made progress. Hope you're doing well and really enjoy your blog. Thanks for all the help you're giving others on their journey.