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General Ludd

Member Since 03 Apr 2012
Offline Last Active Feb 11 2013 03:23 PM

Topics I've Started

A Cautionary Tale: Symptoms Are Not Always From Gluten

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.

Gluten Reactions Getting Worse, Not Sure What To Eat After Exposure.

06 January 2013 - 07:38 PM

I'm writing after a week-long ordeal after a very small gluten exposure. I'm feeling paralyzed about eating anything that isn't 100% guaranteed gluten-free and trying to figure out how to eat during the immediate healing period after exposure.

Since I went gluten free in early 2010, I've had a few accidental gluten exposures. Gradually, my reactions to "glutenings" have gotten worse and my sensitivity greater. I understand this is common, but it seems to have happened quite fast. Now my reaction is severe cramping and pain in the upper gut, nausea (but no vomiting), alternating chills and sweats like I get with bronchitis, sinus headache, and with this last exposure, fever as high as 102°. (I should note that it had been over 15 years since I'd had a temperature over 99°)

Last Friday I ate some likely cross-contaminated food and by Saturday morning I was cramping up and getting chills. Instead of resting I decided to take some ibuprofen and see a client, help a friend fix a dishwasher, and go out to a couple movies. Like a tough guy I was just playing through the pain. I also didn't follow my strict post-exposure diet: water only on the first day, followed by rice and bananas on the second. Gradually back to normal diet and activity by the 4th day. I think I was rebelling a bit because I'd been waylaid twice in December already by apparently minuscule exposures. Long-story short, after a trip to the ER for excruciating gut pain, nausea and fever, and a visit to the GP to check for infection (no evidence found), I am at about 80% of normal!

Does this sound at all familiar to anyone? Is this even a typical gluten reaction or should I be looking into something else here? I'm feeling a little paralyzed about eating anything that isn't absolutely 100% guaranteed gluten-free. What do you eat after a gluten exposure? Even if I take care of myself, I can expect at least 3 days of being out of service. Are there tricks for getting back on your feet faster?

P.S. I have an appointment with a GI doc at the end of the month to look into other possible problems, but that appointment seems like a long way off. I am trying to schedule an appointment with a dietician, but feel ill-equipped to ask the right questions. As for my diagnosis: my IgA tests came back decidedly negative, and I never got endoscopy because I'd been gluten-free for too long by the time I got in to see a GI doc. Before, my typical symptoms were bloating, lots of foul gas, and mild cramping in the upper gut, and, a few days later, severe burning and itching on the tail end of things. Following this I might get a rash in my armpits, elbows or along my waist, but I don't know if this is related: the rash doesn't seem match descriptions of dermatitis herpetiformis.

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