Paul’s story: Celiac disease symptoms aren’t always obvious

By Michael Newman, M.D.
Gastroenterology in Melrose and Wakefield, MA

Caution Bread_Hallmark
People with celiac disease can’t tolerate gluten – a protein found in wheat, barley, rye, and oats.

For most celiac patients, the symptoms are obvious:  gas, bloating, and stomach distress. But some patients exhibit symptoms they’d never guess were linked to celiac disease.

My patient, Paul, is one of those unique cases. He almost didn’t mention a small symptom that alerted his primary care doctor to send him to me for specialized care. Here’s Paul’s story in his own words:

‘I didn’t think it was a big deal’

In August 2014, I saw my primary care doctor for my annual visit. It was a routine check-up, and he asked me the standard questions:  Do you have any concerns? How are you feeling?

My primary care doctor said he was concerned about my weight loss. I had lost 10 pounds since my last visit. I didn’t need to lose the weight, and I hadn’t been trying to, either.

I confessed to my primary care doctor that I had been feeling a little dizzy, but I didn’t think it was a big deal. My doctor thought otherwise – he said he’d look for a cause when he looked at my blood test results.

When he got the results back, he said my iron levels were extremely low. My primary care doctor put me in touch with Dr. Newman at Hallmark Health Medical Associates for a review of my condition.

I saw Dr. Newman and his team throughout September 2014. I had become so anemic that they recommended iron infusion therapy – dosing iron through a needle in my arm – to get me back to a normal level. The infusions took less than 10 minutes each, and they weren’t painful at all. It helped, but we weren’t sure what had caused my low iron levels and weight loss in the first place.

Dr. Newman suggested I have an endoscopy to see what was going on inside my digestive tract. He said he was curious if I had celiac disease, which I thought was kind of strange. I know someone who has celiac, and I wasn’t experiencing the GI problems she had before she was diagnosed. But, he’s the expert!

I asked if I needed to start eating differently because he suspected celiac, but surprisingly, he told me no. He explained that if I did have celiac disease and I stopped eating gluten, the results of my endoscopy could come back as a false-negative too (no gluten, no irritation, no diagnosis).

So I agreed to the endoscopy. Dr. Newman put me under anesthesia and fed a tube down my throat to check for anything suspicious. After the test, he told me he’d found bleeding in my intestines – that made me really nervous. But Dr. Newman explained everything. My aspirin regimen, it seems, was irritating my ulcer, causing me to bleed internally.

When we got the results back, they were negative for celiac disease. However, Dr. Newman wasn’t satisfied. He wanted to run the tests again because he thought my bleeding ulcers and diffuse irritation from medications I was taking could have caused a false-negative. He asked if I’d come back in for another endoscopy.

I went in for another endoscopy, and Dr. Newman was right – the bleeding ulcer had masked the test results, and I was diagnosed with celiac disease.

‘I don’t feel like I’m missing out’

Finding out what was causing my dizziness and weight loss made me feel strangely relieved. Dr. Newman explained everything to me, so I wasn’t really anxious. Personally knowing someone with celiac disease also eased my nerves – really, my only lifestyle change would be adjusting my diet, which Dr. Newman recommended I do right away.

Dr. Newman suggested I see a nutritionist to help me become more comfortable with what my diet should be. The nutritionist helped me figure out what foods to avoid and how to stay healthy alongside my non-celiac family members. Given my prior experiences with low iron, the nutritionist also recommended I get my vitamin levels checked the next time I had bloodwork done.

Sure enough, my next lab results showed that my vitamin D and zinc levels were low – probably because of the effects of celiac disease. My primary care doctor put me on a vitamin D supplement, a multivitamin, and a zinc supplement.

By November, I had a pretty good handle on eating properly and avoiding cross-contamination. I’ve been following a gluten-free diet for almost a year now, and I don’t feel like I’m missing out. I just have to be more aware of what I’m having.

In the morning, I used to eat oatmeal. Now I eat rice cereal because it’s gluten-free. I can still eat at restaurants – I just have to be careful about what I order, and ask specific questions about how foods are prepared.

When I grill burgers and heat up the rolls, I use different utensils to handle my family’s rolls than I do for my gluten-free kind to avoid cross-contamination. My family likes bread and butter, but it’s easy to leave crumbs behind in the butter dish. So, I keep my own private stash of butter!

The biggest change I’ve gone through since my diagnosis is that I just feel better. Once I started eating gluten-free, I gained back the 10 pounds I lost, plus a little more — now I’m at a healthy weight. I’m extremely grateful to Dr. Newman and his staff for their professional efforts and caring – my recent labs showed that my iron and vitamin D levels are back to normal, and my zinc level is almost there. If eating a little more carefully is all it takes to feel this much better, it’s worth the little bit of extra effort.

I’d urge you not to ignore symptoms because you think they’re too small to worry about. My weight loss and dizziness didn’t feel like that big of a deal to me at the time – in fact, I wasn’t even going to mention them. In hindsight, I’m glad I did.

Celiac disease can cause all kinds of symptoms. Talk to your doctor about yours – they could be more serious than you think.

Unusual symptoms? Fill out the symptom checker at celiac.org.

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