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

Archive for the tag “healthcare”

“Making bread safe for Celiacs”

Now isn’t that a title to grab your attention? Hmm, I suppose I already do this, as I’ve made adaptations of several great gluten-free, vegan bread recipes (e.g. this and this). But this article is not focused on healing through dietary shifts; it’s about the big boys with the big dollars- PHARMA. While a part of me would love a pill to magically render my finicky guts capable of handling gluten, how would it affect my other newly developed food sensitivities? My bone density loss? Chronic fatigue? My antibody count is normal now, but these problems persist. And what of side-effects?

I will say that I would love to have a gluten-shield as back-up for situations such as the one I experienced 2 weeks ago. I was glutened at a GIG-trained cafe that I had proudly touted to all gluten-free friends as “the only place I can safely eat.” Well, now the number of places I can safely eat is zilch. I hesitate to name the restaurant because they really do try very hard to keep gluten-free items free from cross-contamination and they really do care. The run-down: a new employee made my gluten-free wrap in the gluten-free prep area, but with a tomato wheat wrap instead of a gluten-free brown rice wrap. I was in a hurry and felt overly confident as the cashier chatted with me about her sister’s severe gluten intolerance and the difficulties involved with avoiding gluten when dining out, and I really should have noted the color of the wrap before taking a large bite once in my car and on the road. At least I noticed after the first bite, but the deed was done, swallowed, sealed. I turned around and went back to the cafe, asking to see what the gluten-free wraps look like, thinking (PRAYING) perhaps they’d switched brands. Before anyone could take action, the prep girl slapped her forehead, exclaiming: “Oh I put your order on a wheat wrap by mistake!” Employee panic/mania/profuse apologies ensued, and I tried to stay as calm as possible (delaying the frenzied explosion of tears until back to the privacy of my car). They took my number and apologized some more, but I was crushed. In a matter of hours I was bloated, foggy-brained, and drained. The next day the owner called me to offer sincere apologies, as well as a gift card (which I sort of pushed off, but she insisted). She informed me that the kitchen had already rearranged gluten-free ingredients and foods in the kitchen area to avoid further confusion. I groggily told her I was concerned that the employee did not understand the poisonous nature of gluten for those with Celiac, but that I appreciated their effort to ascertain GIG training/certification (only place within 2 hours of me in any direction). I was also a bit miffed by the glutening of the gluten-free prep area (did they wipe down the surface on which she’d made my “gluten-free” wrap prior to preparing food for subsequent customers who requested the gluten-free prep area that day?). My insides are still not quite back to their norm, so I’ve gone back to the ever-popular diet of bland, low fiber food. I did have a moment of silliness and almost purchased a frozen gluten-free cheese enchilada yesterday (despite dairy and corn intolerance), but thank goodness the rational part of my brain vanquished the whims of my taste buds.

So yes, long story short, I would like a pill to take for the unpredictable world of eating out, but not for an everyday blanketing of my health issues.

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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