Wednesday, June 4, 2014

Celiac Diagnosis

Yesterday I found out that there is approximately a 95% likelihood that I have celiac disease.

When I got the call from the nurse reporting my lab results, at first I was close to elated. I felt so validated. All my gluten-free eating over the last three years had actually been a smart choice.

Then the reality of it all came crashing down on me. Celiac disease. Disease. I have a disease. An autoimmune disorder, to be exact. My body hurts itself. I’m at risk for a ton of other health issues. I can no longer just say, “Oh, that’s probably safe to eat, I’ll be fine.” I can no longer base whether or not it’s ok to eat something on whether I feel sick afterward. If it has gluten in it, then it’s hurting me. Whether I feel it or not. Period.

Now I’m overwhelmed.

Now, I guess I cannot claim 100% that I actually have it. I’ve done a ton of reading about the blood test that was performed, and there is supposedly a 5% chance that I don’t have celiac disease and that the test gave a false positive. But the people who get false positives for the blood tests typically have another autoimmune disorder which affects the blood results. And as far as I know, I do not have another autoimmune disorder. (At least I hope not…)

To knock out that 5% chance that I do not have celiac disease, I am supposed to get an intestinal biopsy. But there are some major issues with this. First, obviously, it would cost money. Yuck. Second, I am currently on a gluten-free diet, which makes it very unlikely that the results of the intestinal biopsy would come back positive. (The blood test actually shouldn’t have come back positive, either, but more on that in a moment.) So, prior to having the biopsy performed, I would have to eat a ton of gluten, daily, for at least six weeks prior to the biopsy (based on various sources I’ve read).

Just shoot me now.

Seriously, gluten makes me so sick. Some friends aren’t aware how sick I was prior to going gluten-free, but it wasn’t pretty. Daily severe abdominal bloating. Cramping. Stabbing pains. Diarrhea four to five times a day (no exaggeration) alternated with days of constipation. Chicken bumps on the backs of my arms - a condition I’d had as long as I could ever remember that disappeared when I stopped eating gluten.

And you want me to go back to this for a minimum of six weeks?? You’ve GOT to be kidding me.

I just don’t know what I’m going to do.

And to discuss another very interesting issue, I was supposedly eating gluten-free when they performed the blood test. I’d been eating gluten-free for THREE YEARS. I told my allergist that the test would be negative even if I had the disease since I was eating gluten-free. And that’s supposed to be true, if you’re doing a good job with the diet. He said he wanted to run the test anyway. And whattayaknow. Positive for celiac disease. Apparently the guy knew what he was talking about.

What this means is that I’m apparently eating a significant amount of gluten from somewhere. It must be hidden in items that I’m not catching, or I’m getting cross-contaminated. Cross-contamination is very likely, because I honestly haven’t worried about it much. A crumb here, a “contaminated” spoon there, eh, I figured it didn’t matter. I didn’t seem to get sick from it, so it I assumed it wasn’t hurting me.

And now that’s all out the window. It is hurting me. My blood antibodies are elevated, so it’s hurting me. Even if I don’t get noticeably sick after eating gluten, if I have celiac disease, it’s hurting me. So much pressure. So much to learn. So much to investigate and be aware of. So overwhelming.

I don’t know what to do next. I don’t have a doctor seeing me for GI problems or celiac disease. This whole discovery was somewhat of a fluke; I was at the allergist to get tested for an avocado allergy and mentioned my gluten issues. When I got the call with the lab results yesterday, the nurse said she’d send the results to my primary care doctor and that I should go do some reading at I was like, really? That’s it? “You most likely have this autoimmune disease, here’s a website, we’ll tell your doctor, have a nice day.” For real? What does that even mean? Is someone from the doctor going to call me? Do I call them? Do I need to go see a specialist? What are the next steps? Help?

So...yeah. That’s where I’m at. Gluten-free diet of three years failed. 95% likelihood of lifelong autoimmune disease. Absolutely no gluten whatsoever for the rest of my life. Gotta get the kids tested, because it’s genetic. Feeling somewhat alone, because only 1 in 133 people has this disease, and up to 90% of them are undiagnosed.


  • I have an answer. I have a diagnosis. My gluten-free eating has not been in vain.
  • I am aware and can get my kids tested, and if they have it we can do early intervention so they won’t have to face as many health problems.
  • I actually know several people with diagnosed celiac disease who live nearby to me. Yay for support.
  • It’s a totally manageable disease without medication, requiring only a dietary change. (A somewhat difficult dietary change, but one that’s getting much easier as more people jump on the gluten-free bandwagon.)

Things could be much, much worse. This really won’t be that bad, especially since I’ve been eating (supposedly) gluten-free for three years now. I just need to be a little more strict about watching what I eat. Ultimately, it just feels weird to have a new label, and to know that I actually have to be cautious so I don’t cause long-term damage to my body. It’s no longer simply avoiding GI problems, but now it’s also managing a disease. It’s just weird.

Alright well I suppose that ends my ramblings on this for today. I’m sure you’ll be hearing more about this. I’ll have to restart that gluten-free blog post series I attempted to begin over a year ago.   It will have a lot more value to me now.

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