hez: Mine was a rather late diagnosis; I had lost over 90 lbs. and almost had to be hospitalized. Since diagnosis, any exposure to gluten will make me sick for about 3 weeks.
It may take time to get rid of the gluten in your diet - the stuff shows up in the craziest places. I was diagnosed 2 years ago, and still have problems with exposure, especially the airborne stuff.
In my case, other things may also cause similar (and therefore misleading) symptoms. I will get celiac disease-like symptoms (weight loss, diarrhea and cramps, etc.) if I'm exposed to lactose, or if I am dehydrated - easy to happen. Keep track of what you eat; you might be getting gluten from some obscure, easy-to-overlook source.
Also, it was reported on this website recently that celiac disease may be accompanied by any number of other intolerances (lactose, citrus, etc.) so it may be advisable to look into those issues as well. I know that whenever I get a rumbling in the stomach, or cramps, my first impulse is to drive myself crazy trying to recall if I could have taken any gluten; however, the symptoms may actually be from a lactose reaction, or other non-celiac disease intolerance.
I have read that celiac disease may be accompanied by any assortment of digestive disorders. I continued to be symptomatic after going gluten-free, only to discover the symptoms were now being triggered by a lactose intolerance - which I am told is a common deal with us.
Sometimes I get symptomatic apparently for no reason. Perhaps it's just another un-discovered intolerance.
Hi Musicate. Are you a musician? I used to play and compose (in an earlier day, before electricity ) but I digress....
I was diagnosed about 2 years ago, and despite all efforts to go gluten-free, I kept getting contaminated - and still get it on occassion. It is almost impossible to avoid getting "glutenized" (I like that word).
The Asian stuff is a real pain. For a year and a half after my diagnosis I practically lived on these Japanese Rice crackers that had a HUGE "gluten free" label on the package. I later found out (through a related forum, and subsequent follow-up) that the damn things had gluten - despite the label! That explained why I had remained symptomatic despite all my efforts. You simply can't be careful enough. Stick to the walls in the grocery store; avoid the aisles.
I don't know if the hospital dieticians and nutritionists can be relied upon either. Shortly after my diagnosis, my specialist sent me to the hospital dietician for direction and advice on gluten-free diets. As I knew nothing about gluten at that time, I was totally reliant on the hosptial staff. My experience with the staff was silly and a total waste of time; the dietician knew nothing about gluten-free diets! All she did was tell me to consult the internet. Ridiculous!
These forums are good, though.
Another thing to be careful about is the different substances that exist in the same "named" product from one country to another.
For example, I am trying to determine whether or not "Keens" Dry Mustard has gluten in it. I have been told that Canada and the U.S. differ, and that one country has a safe version; the other country does not. I think the U.S. has the safe version, so I might be out of luck.
Depending on where you live, you will be subject to different labelling laws: laws that may allow trace amounts of gluten to be present in "gluten-free" labelled foods. Good luck. It's quite the task ferreting out every last bit of gluten from one's diet.
You might think this is ridiculous, but a dry martini slows down (not stops) my pain, cramps and grumblings. Hey, who am I to complain about an effective course of treatment? In fact, if I want to be really healthy, I'll have 2. (...just kidding about the second one) I'm serious, folks; however, I am not sure this could be considered one of the more standard remedies.
One thing that is apparent with all Celiacs is that their conditions manifest themselves in so many different ways, and their sensitivities are incredibly varied - although gluten remains the big one. This martini thing works for me; I don't know if there is an anaesthetic effect to the gin or what. And what's odd, other spirits don't have that effect. Hmmm...perhaps the subject could bear further extensive research....
I would be tempted to disregard the self-diagnosis, and get it done for real. Even the professionals don't get it right half the time. It still took 3 GP's and 1 Specialist roughly 7 years to diagnose my condition correctly. This is too serious a condition to mess with, or to leave in the hands of an amateur - you. There could be associated cancers, and other complications, sensitivities, etc. Don't guess with this stuff; it's too complicated and too risky. Also, the more-progressed the condition at the time of diagnosis, the more serious and prolonged are the effects of gluten on the system. Mine is such that I have to be scoped "up and down" every three months looking for cancers; it aint pretty. Check it out by a pro.
One issue I overlook often is the financial cost to many of you on this forum. Being Canadian, I just walk into the hospital, get it done and walk out...no cost. Unfortunately, folks in the U.S. get stung with a lot of the costs, and I have noticed that the associated expense can deter someone from obtaining a definitive diagnosis. That is really unfortunate, as this condition is so insidious it should never be tolerated any longer than necessary, and it is terrible to consider that the cost of diagnostic procedures may stand in the way of peoples' health.
We eat very simply around here..."meat and potatoes" but NO spices, sauces, preparations, unless carefully checked with the manufacturers (or with others on this forum) Consult the lists and talk with people; it is a monumental task, but we all go through it. That is another reason why I suggest getting a real diagnosis: why make all the necessary sacrifices if you don't have to, and a real examination will resolve the matter. Good luck.
Hermit: You might find the restaruant has a book/binder/brochure detailing their menu items and how they fit with standard food issues. The next procedure is to cross-examine the staff (that's always fun) Otherwise, it's salad, no croutons, watch that dressing!
I've given up going to chain-type restaurants, as I find it's too much trouble cross-examining the inexperienced staff (usually the last thing on their mind is the content of the food they serve)
Also (and this is not encouraging for restaurant goers) I have heard horror stories of kitchen staff - after having been warned of a patron's Celiac condition - deliberately including the offending material in the food: "Aw, what they don't know won't hurt 'em." Yikes!
My condition is quite advanced, such that the slightest exposure to gluten sets off a bout that lasts roughly 3 weeks; with that type of down-side, I can't afford the risk so I simply don't go out to those places. There is a chef at the restaurant here at the local Marina that "understands" me , and he is very good. In fact, when we go for dinner there, the chef's gluten-free "improvisations" are often more fun than the menu items, and I very much appreciate his efforts. I am lucky in that regard, but nonetheless restricted to one place that I can rely upon.
On the up side, I have discovered after years of extensive research and field-testing that Martinis are OK for me; so, if the salad won't work for you, you could try some of those gluten-free olives, annointed in your favorite gin. Who says gluten-free is a drag?? Good luck.
Hi folks. The re-adjustment has been very difficult, as I had been expecting an appointment to the Bench, and having just turned 54 this month, expecting to work another 10 to 15 years.
To complicate matters, my wife had worked with me as my Legal Assistant. Fortunately, we sort of saw it coming, and she was able to get a much less stressful job (with a nicer boss, too) working at a local Holistic Retreat.
My area of practice had been in Litigation, which is a pretty heated and stressful environment, and frankly we're both glad to be out if it.
We are fortunate that we live away from the temptations of the city (all those neat restaurants, etc. that were driving me crazy).
I intend to go back into music, as I was a professional woodwind player and film composer before going into the legal profession. Specifically, I intend to write music for classical guitar. Anybody got a gig??