New Diagnoses

So a while ago I posted about gluten. Since then, here is what has happened: I continued to eat gluten free for about 2 months…..then I fell off the bandwagon for a bit because I realized that I was still experiencing some nagging symptoms that just didn’t seem to be resolving by cutting out gluten. Over the next 2 months I ate about 95% gluten free – so I definitely had moments of ‘cheating’.  Over Thanksgiving and the weekend afterward I ate quite a bit of gluten (with at least one meal each day) and on Monday I was very ill.

However, my symptoms still didn’t quite add up to me: a lot of them can be associated with celiac disease or a gluten intolerance, but many of them cannot.

On Tuesday I had an appointment with my endocrinologist and I explained everything to him – how I’d been feeling throughout 2014, my symptoms that seemed to be related to/coincide with the consumption of gluten and my symptoms that seemed to have no relationship to gluten consumption….several of which involved strange things happening to my blood sugar levels.

As I talked, his facial expression changed and I knew he was going to say what I didn’t want to hear: ‘I think you have gastroparesis’.

He ordered a few antibody tests for celiac, despite knowing I had only been consuming gluten regularly for the past 5 days and intermittently before that….meaning the result might come back with a false negative.

He prescribed Reglan for my nausea/vomiting (though I am apprehensive to use it as the side effects are scary, so I’ve only taken 2 of them in the past 2 days – despite being prescribed enough that I could in theory take 3 per day) and to stimulate digestion. He advised me to begin cutting fat and fiber from my diet and asked me to keep him up to date on whether these small adjustments are helpful or if I develop new symptoms.

Today the antibody tests came back – I am on the borderline between a negative and a positive result  (by a one point difference). Considering I hadn’t even been regularly consuming gluten, my doctor says he believes me to have celiac disease but he can’t officially put that into my record without a lab result to support it, so for now it’s not being documented. He wants me to eliminate all gluten from my diet now, however, so my gut can begin to heal. Once my gastroparesis symptoms are further under control we will talk about reintroducing gluten to see if we can absolutely confirm a celiac diagnosis.

He said that as far as the gastroparesis is concerned he wants to do a gastric emptying test and upper endoscopy…but not yet. He wants some of the celiac damage to heal first, if I do in fact have celiac disease (which, like I said, he’s fairly sure I do). There is one symptom I’m having, as of today, that concerns him and may result in needing an endoscopy and/or colonoscopy in a quicker timeframe to rule out any other issues or damage to my GI tract.

So….yeah. Gastroparesis AND celiac disease.

I’m one lucky lady.

For future tests I’m going to have to find a GI doctor…and I think I want to meet with a dietician to help me figure out what the heck I can eat…because a lot of the safe foods for celiac disease are NOT safe foods for gastroparesis, and vice versa.


3 thoughts on “New Diagnoses

  1. The same exact thing happened to me. I was having symptoms whenever I ate gluten. I had an endoscopy done to test for celiac’s, which came back negative, but kept eliminating gluten from my diet because I still felt terrible.
    Most of the symptoms went away, except for the morning nausea. I went back to my GI and explained my persistent symptoms and she said it was gastroparesis. She did not do a gastric emptying test, as when I had my first endoscopy done, I still have some food in my stomach, even after fasting for 12 hours. My GI suggested reglan, but she and I both agreed that I could eliminate my symptoms without it (because of those terrifying symptoms) and just by changed my diet and timing of meals. It has been almost a year and, of course, it has been a struggle (what isn’t in the life of a diabetic?), but it has gotten so much better. I am did reintroduce a little more gluten in my diet, but reduced my fiber and fat intake, am eating smaller meals more frequently and have been doing and feeling great. It definitely is frustrating having gastroparesis because of diabetes, but it, as with everything, in time, it will get better!

    Hope you are doing much better!!

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