Do I, or Don’t I?

Pic of the day - What Being Gluten-free Means to Me

Today I was invited out for a business lunch. I had brought my own lunch, but I tucked it in the fridge. I ate a couple small snacks, hoping to not be hungry when I got there. I wanted to be hungry enough to eat something small, but wanted to avoid eating “real food”.

I’m pretty careful about going out to eat because I’ve been trying to go gluten free. I’ve been sick for years, actually decades, finetuning my diet trying to find out what would make me not feel sick. It’s a long story, which I’ll try to shorten here, but it started with my going vegetarian as a teen, gradually adding in eggs & milk; then chicken & fish; then flipping and going pseudo-paleo almost; then … well, you get the idea.

Last year I started eating a lot of quinoa. One of the issues I’ve had off and on throughout all this is chronic skin problems centering on my face. I’ve been getting medical treatment for the skin for around a dozen years now. When it’s bad, little kids ask their mom, “what’s wrong with that lady?” I try very hard to not let it get that bad. Quinoa was helping, and so I started eating it at least once a day. This meant I was eating a lot less bread and noodles and rice.

After a couple months, I didn’t just feel better, I felt FANTASTIC. I felt 20 years younger. I had energy leaking out of my pores. I was bouncing everywhere I went. My skin was better, not perfect, but better. Two medical professionals I know on Twitter and one public health faculty member all said the same thing, “You know, you sound like our patients who’ve gone gluten free.”

The question then became was it gluten intolerance or celiac. My mom was diagnosed as celiac around 15 years ago with a skin biopsy for the skin problems she was having, but after a couple years she decided not to stay on the diet. I had almost forgotten it happened. My doctor agreed to my doing a gluten trial for two weeks before the blood test. Frankly, I don’t know which blood test, but I really ought to find out. I was profoundly ill and miserable for the two week trial. My skin felt like it dissolved. I was covered with bloody sores and scabs; constantly parched with thirst; my skin swollen; my cheeks swollen and constantly bleeding and being bitten; my face and my feet swollen. Curiously, although the most common symptom for both gluten intolerance and celiac is intestinal upsets, I never had that as a symptom.

Anyway, the test came back negative. I didn’t care what the test said. It might not persuade my docs, but the experience persuaded me. My reaction was, “I am never going back on gluten ever again.” Evidently false negatives are fairly common with this test, especially when someone has gone gluten free for a while first. From my reading, it seems like the main differences between the two conditions for presenting symptoms are the vitamin deficiencies. Gluten intolerance doesn’t get them, and the symptoms go away as long as you aren’t exposed to the trigger, whereas celiac is all about malabsorption and deficiencies in various vitamins & minerals. My personal health history is studded with vitamin & mineral deficiencies. So, according to my medical record I have gluten intolerance. I am convinced I have celiac. But the tests don’t support my theory, and I am not willing to go back on gluten intentionally in order to have more tests.

Today at lunch, first I tried to convince the person I was meeting that we weren’t really hungry and should go somewhere else. But really, I was hungry. I felt like I was starving. The snacks hadn’t worked. So when he ordered his food, I tried to find something safe on the menu. I’ve had omelets there before without a problem, so I stuck to that. It was fine for the first half of the omelet, then I accidentally flipped it over. The underside of the omelet didn’t look like an omelet. It looked like a pancake. Oh, that is bad. So I set aside that part and didn’t eat it, hoping that I’d be OK.

Two hours later I started breaking out in hives. Then my face started to burn and swell. By the time I got home I felt awful. I laid down on the couch for a minute, and woke up some time later, fatigued and confused. OK, I’ve been glutenized. Groggy, and painful. No more omelets at Angelo’s. If I had a diagnosis of celiac disease, there is a medication the docs could give me for the skin problems that come when I’ve gotten into unexpected gluten. I can’t get it because I don’t have the diagnosis.

For the celiac testing, the usual progression is if the blood test is positive, then they do an intestinal biopsy, or a skin biopsy if the skin is the primary symptom. Rarely, some places will do the biopsy with a negative blood test if the symptoms are strong enough, but you still need to be on a gluten diet for any of these tests to work. The final court of last resort is a genetic test. The insurance really doesn’t like to cover that, and it wasn’t an option for me until I was offered the opportunity to join the PGen study.

So now, I’ve sent in the sample. When I filled in the questionnaire for the study I emphasized celiac as a condition of interest in my family genetics. A message from them said it would be included in the tests they’re running. I’m sitting here, suffering from a gluten reaction, with my face and mind both on pins and needles, wondering what the results will show. Do I have celiac? Or will the test result show another negative? I am almost dreading finding out. What if it’s negative again?

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3 thoughts on “Do I, or Don’t I?

  1. I am not celiac, just gluten intolerant, with a very large dose of worsening “oral allergy syndrome”, and a failing gall bladder. If I stray even by accident, I get a rather nasty reminder why I can’t eat any of that stuff anymore, and am stuck on just rice for days until things settle back down. It is not easy, but I stopped being sick literally all the time.

    • It is so hard, medically, to tell the difference between these two. I am trying to learn more about the associated symptoms as well as the main diagnosis. Have you joined PatientsLikeMe to talk with other folk who have the condition you have? That’s how I got into this study.

  2. Pingback: AT LAST!! | PGen Participant

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