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A Cautionary Tale: Symptoms Are Not Always From Gluten

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#1 General Ludd

 
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Posted 11 February 2013 - 03:24 PM

I am writing with a cautionary tale. When those of us with food sensitivities have a GI problem, our celiac/gluten sensitivity, lactose intolerance, etc are almost always the first thing we go to. For over a two year period I had become convinced that my gluten sensitivity was becoming worse and worse. By November of 2012 I was having episodes of severe pain in my upper abdomen that also were accompanied by fever and chills. (It had been about 20 years since I'd last had a temperature over 100°). I was starting to make absurd conclusions about where the gluten was coming from (given how strict I've been with my gluten-free diet for over 3 years--I am very very strict). Absent any reasonable gluten sources, I began suspecting I'd developed sensitivity to corn or soy. But the events seemed unrelated to my consumption of those substances.

After an emergency room visit at the end of December and, and a miserable January, I finally got in to see an insightful GI doc, we began looking for other explanations. He scheduled some tests right away including an ultrasound (came back negative for disease or injury), and a CT scan with contrast dye and barium "smoothie". Much to my shock the radiologists found a tennis-ball sized mass in my mesentery. I am just recovering from the biopsy today to determine if it is malignant, but either way it will have to come out.

So my recommendation is that, along with the usual questions about whether it might be another food sensitivity, it is very well to consider that if your symptoms become increasingly or inexplicably worse, it may be worth asking your doctor to do a thorough exam for other possibilities. Especially if they are accompanied by chills or fever.
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I have been lactose intolerant since 1990. I went gluten free in 2010 after bloating, cramping, increasingly foul gas, and uncomfortable itching on the tail end of things was becoming unbearable. After a short time without gluten I'd felt better than I'd felt in years. I generally eat a low-fat, high-fiber diet full of colorful foods. I eat meat only when I eat out (at places I trust).

My IgA came back at low-normal levels, and I have not had gut biopsy for celiac because I was gluten-free for at least a month before I could get in to see a GI specialist. By then I wasn't about to eat gluten again just so I could have an invasive procedure that might tell me I shouldn't eat something I already know is making me sick.

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#2 gatita

 
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Posted 11 February 2013 - 03:52 PM

Oh my, how scary. I sure hope you get good news from the biopsy!

Thank you so much for the cautionary message....You are so right, I think it's often too easy to assume our gluten troubles are the cause of all our problems.
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Diagnosed with wheat hates me 4/13


#3 Tiredsean

 
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Posted 11 February 2013 - 04:18 PM

Yeah this is why I had major testing done before falling on food allergies.Blood tests galore,MRI,echo scan of abdomin and kidneys etc ,came back neg.I truely hope the best for you and a speedy recovery
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