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Member Since 14 Oct 2006
Offline Last Active Feb 24 2007 05:52 PM

Topics I've Started

Frequent Fliers Unite!

20 January 2007 - 10:48 AM

I know there are tons of us who are gluten-free and have to avoid other foods as well. . .meaning that while airlines are making great strides in offering gluten-free meals, for many of us this isn't enough. On my last trip on British Airways, I was given a "Gluten-Free Meal" as I requested (shock! stunned disbelief! they actually remembered to put one on the plane??!!). Which would have been great, except that the bun was the only item on the tray with ingredients. . .thank god. . .and the ingredients started with "wheat starch". Now I know it's technically gluten free, but that doesn't stop it making me violently ill. Needless to say, this shattered my confidence in the gluten-free nature of the rest of my unlabeled meal, and I didn't eat any of it.

I'm now considering switching my business to airlines that don't ask me to pay for a meal (which, let's face it, without complete ingredients, I'm never going to eat), but it also occurred to me that we'd all do a lot better ("we" being the special meals contingent on the average airliner. . .which, if the number of tray-laden trips the flight attendants make before each serving is any indication, is a rapidly increasing number) if the airlines would clearly label the ingredients in their special meals.

So here's my plea: the next time you fly (on any flight that offers meal service), ask for a gluten free meal when you book your ticket, and write feedback to the airline explaining what happened to you after eating the meal (especially if it made it easier for you to fly or if you had a serious reaction) and letting them know how very much we'd appreciate complete ingredient listings on all of the parts of the meals they serve us (and how very depressing it is to get your "safe" meal and discover the only thing on it you can actually consume safely is the bottled water).

Let's spread the word and highlight the airlines that are celiac-friendly!

For Those Who Are gluten-free And Corn-free. . .

20 January 2007 - 10:27 AM

This is a question for all of you out there who have to eat gluten-free and are also allergic/intolerant to corn: what do you use for OTC pain relief (like Tylenol or Aspirin. . .neither of which are gluten-free/cornF)?

This is driving me crazy and I'm tired of coping.

Doctor's Note For Travelling

24 November 2006 - 01:55 PM


I'm planning a trip back to Canada to see my parents for Christmas, and have been told that I will need a doctor's note in order to take food through security and onto the plane. . it isn't really an option for me not to take food onto the plane, as I can't eat the "gluten-free" meal the airline might provide, and with all of my sensitivities, my chances of finding safe food past security are nil. Plus I get violent migraines if I don't eat for six hours. . .a bit tricky on a nine hour flight! I also can't eat many prepackaged foods, so I'm going to need to take home-cooked stuff on board. I've travelled extensively since my diagnosis, but I never used to bother with this stuff. . .just brought what I needed and blagged my way through security . . .and even customs. . .yikes. . .I think I'm a little insane. . .

I'm concerned because my BIL (who has similar problems, though a different illness) had all of the food in his carryon confiscated at security on his last flight, though he was told that if he had had a doctor's note, it would have been fine. I'm also wondering about stuff in my checked luggage - I've never had a problem before (my first solo trip abroad I left home with a three-month supply of homemade gluten-free biscotti in my checked luggage. . .did I mention I'm a little insane?), but that was then, this is now.

Anyone have any advice? (I'm hoping to see the Doc next week. . .)

Celiac Disease: Not Just A Gi Problem

18 November 2006 - 05:55 PM

I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . :P ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease.

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