hemhawseesaw

The ups, downs, and runarounds of Celiac Disease and food sensitivities

Health Update

I’m only posting TMI health updates because I promised myself I would, particularly in response to the numerous blogs that have given me the strength to keep needling my way through the messy, slow, impersonal healthcare system. No worries if this does not interest you. I try not to make it the epicenter of my life, but it more or less forces its way into this focal position.

After 2 weeks of the elimination diet (woohoo! I stuck with it!) I had a follow-up appointment with my nutritionist. She was none too happy to read my food and symptom diary, and essentially bade me get myself quick back to a gastroenterologist for continued and new symptoms (severe heartburn, most notably). I was reluctant, because my experience with GI doctors ranges from laying hands on me and hailing the almighty JC after injecting me with sedative for an upper endoscopy, to turning me away with my complaints of persistent discomfort/pain, to laughing at my suggestion of bacterial overgrowth or other intestinal malady in addition to Celiac Disease. But I went ahead and made an appointment (or tried to… the earliest the GI doc highly recommended by my nutritionist could see me is JANUARY!) with a nurse practitioner, the very same who on a whim had me tested for Celiac Disease 7 months ago. The receptionist told me that this NP actually has Celiac herself (TMI for over-the-phone confidentiality?) and that it’s one of her specialties… if only I’d known and gone back to her after my diagnosis instead of those rude GI doctors! Anyhow, the nutritionist said that my problems are beyond her scope of practice because a bland, soft diet did not make me better, and she thinks medication may be necessary. She was also concerned that I’ve lost 5 pounds in 2 weeks (if only I could revel in this instead of having it described as a “symptom”). She recommended a full thyroid panel and diabetes re-test.

So, yes, it is incredibly frustrating that the elimination diet didn’t cure my ills, BUT I am allowed to start adding back foods, 1 every 24 hours, with the exception of nuts, alcohol, caffeine, seeds, and raw salads. I can try rice cakes and nut butters, and even olive oil! The trick will be distinguishing symptoms from newly added foods and my continual heartburn, rib pain, fatigue, and yucky “evacuations” (as they say in healthcare). She also recommends eating no less than 1500 calories, but tell you what it is a struggle to even reach 1200 on a bland diet with no fats. I’ve already eaten my 3 meals for the day and I’m at 1000, so the rice cooker is activated to get me up to 1200.

I really feel that I have been unfairly bandied about the healthcare system (a different nutritionist at a research hospital told me to report my progress by email and we would meet again, but she never responded to me… and I know I had the correct contact information; many doctors and healthcare professionals just tell me “it takes time”). I hope 7 months is long enough to get someone’s attention that yes, I am following a strict gluten-free diet, and cutting dairy, legumes, sugar, corn, soy, but each day is digestively (and mentally) taxing.

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