"Years ago my personal Wikipedia research lead me to conclude that there were no helpful tests to find out what I have"
My son has had celiac disease all his life, from a long time before it became trendy and it'll last till the end of his life a long time after its off the front page. He's one of the 1 in 100. This was before wikipedia. Perhaps a future dating system will number years as in BW before wiki and AW after wiki. Anyway needless to say I recall quite clearly, his pediatrician FINALLY did a blood test as a last resort (celiac is not a profitable disease to treat, therefore rule out everything more profitable first) which had wildly high results, then refer to gastroenterologist who knocked him out and did an endoscopy, "yup all inflamed and Fed up in there" then trial run gluten free diet and his blood antibody numbers started dropping and he nearly instantly had a normal digestive system. And like yourself he gets horrifically sick a couple hours after eating gluten containing foods and it lasts and closely resembles a very, very bad food poisoning incident (like to the point of dyhydration danger, and yes he has been poked with IVs in the ER for this). So I donno about all this "there's no tests" this is extremely heavily trodden ground. Your primary care doc might be pretty ignorant of this specific disease but I can't imagine a gastroenterologist being confused, this is after all kinda their bread -n- butter...
On the other hand I donno if you technically "need" a medical diagnosis. I'll spare you the details, but shellfish and plain ole chicken eggs don't seem to be terribly well tolerated by my digestive system... solution? I don't eat them. I don't need a trendy diet or diagnosis or a pill or celebrity endorsement, I just don't eat lobster or fried eggs.
Note that wheat provides approximately nothing valuable to your body other than empty calories, so feel free not to eat it. Also almost all junk/highly processed foods are stuffed with wheat as a filler so your health will most likely dramatically improve if you stop eating wheat. The reason trendy actresses feel better after stopping wheat is not the lack of wholegrain bread but the lack of twinkies, not the lack of soy sauce but the lack of an entire pan of lasagna in one sitting, etc. Its not at all like giving up citrus or giving up meat where you have to put at least a minimal amount of care into making sure you don't end up with a major nutritional problem.
BTW his whole digestive system got messed up and he's also allergic to soy and milk casein proteins. Supposedly if you "tough it out" for a couple decades you can get cancer from the constant inflamation. Also his growth was pretty stunted until he got a proper diet (at which point he started growing so fast I swear you could watch him get taller). So get this checked out. I may not be a medical doctor, but it doesn't take a PHD to figure out if it makes you sick, don't eat it.
Never eating wheat means I can't easily go out with others to eat (many restaurants in a Southern college town _only_ have things with wheat), can't eat most desserts, and basically can't do fast food (almost everything is breaded). So it's a huge social handicap.
So the idea that "just not eating wheat is not a big deal" is just not true.
"Never eating wheat means I can't easily go out with others to eat"
I donno man, obviously we've gone over this ground with my son rather intensely as you might imagine with a grade school kid wanting to go out like/with his friends.
If its a VERY small town yes you might be screwed but his dining choices have been stuff like:
Steak dinner with all the fixings hold the garlic bread.
"grilled meats" on a salad (grilled chicken ceasar salad no croutons is pretty stereotypical)
"lets hit the salad bar"
As for "basically can't do fast food"
Grilled stuff is not breaded. Screwed on fish fry friday night. On the other hand the local BBQ joint will serve him anything, just not on bread. Cajun stuff on rice is good.
Look for low/no carb option even if not heavily advertised/promoted they'll probably do it anyway, just like they'll serve you a chocolate shake even if its never been in a TV ad... Culvers etc will toss a slice of meat on a bed of shredded lettuce. One thing to look out for is some places will fry their french fries in the same oil as they cook wheat stuff, while others will not, while others will tell you its safe but he gets sick anyway.
Yeah taco bell and KFC you're pretty much SOL. On the other hand other than the rolls he does pretty well with almost everything at boston market. Pasta houses like olive garden yeah you're pretty much SOL there too. OTOH the local non-chain non-corporate genuine italian family restaurant has started serving fresh GF pizzas and they taste good.
We've gone to a couple buffet type places and chunks of meat and fish and salads and fruits tend to be pretty good.
If its not breaded, not pasta, and not on a bun you're Probably good plus or minus fillers, flavorings, and contamination.
"So it's a huge social handicap."
Yeah on the no beer thing. In a decade when my son can drink he's going to have to be a rum -n- coke guy like his old man.
"can't eat most desserts"
"Fruit, the original dessert"
Bananas Foster aka flambe bananas
Ice cream in a dish not a cone.
Strawberries and cream
Chocolate dipped anything. Chocolate dipped everything.
Sherbets and ices and all manner of frozen and gelled creations.
I am well over the drinking age so this may or may not apply, also I'm an old married guy so I don't give a F what people see me drinking, so I'll admit I like a little glass of sweet fruit wine for desert or one of those icy "girlie" booze drinks for dessert. If you don't like the taste of a well made grasshopper or a fine sweet cherry wine there's obviously something wrong with you, and I don't need to care if only girls are supposed to drink that stuff. If I made chicken cooked in wine sauce or whatever the leftovers get sipped for dessert.
The stuff you can't eat is cakes, pies, cookies, ice cream cones and not much else.
Look on the bright side, my son is allergic to milk too, so exclude dairy then you're really in for it at dessert time.
One thing to look out for is some places will fry their french fries in the same oil as they cook wheat stuff, while others will not, while others will tell you its safe but he gets sick anyway.
Wait, really? I just want to confirm: Fried foods are OK when they are NOT fried in the same oil as wheat stuff, and NOT ok when they are friend in the same oil as wheat stuff? You can confirm this?
This is a problem area I have. I used to get french fries and they'd be hit or miss, but then somebody told me fried stuff _always_ has gluten, which I didn't really understand, but I mean, I'm not a cook. Now it looks like that person was just wrong.
By the way, graduate students (i.e. my colleagues) don't go to restaurants that serve steak very often :). I can do the grilled meat on a salad thing, but that almost always still leaves me hungry (I'm not big, but I still have pretty high energy demands). Also, I used to eat hamburgers without the bun, but honestly, they usually just taste bad to the point that I'd rather eat alone than eat that around people. It's pretty surprising that a hamburger with no bun tastes that bad. It has to do with the way restaurants or fast food places cook them; if I cook hamburger meat at home, it's 100% delicious.
And yeah, I do have a lot to be thankful for, especially since I can eat milk-based stuff.
"I just want to confirm: Fried foods are OK when they are NOT fried in the same oil as wheat stuff, and NOT ok when they are friend in the same oil as wheat stuff?"
Yeah, fry some stuff at home and look at the results (its fun!).
The first time you fry some fish in some oil and then fry some french fries in the same oil you'll know exactly what I'm talkin about. It does not require gluten issues to see little specs of burnt fish-coating all over your fries. Its crunchy, sometimes tasty, and not overly gross, so most non-GF don't much care. If people complain the fries taste/smell like fish or chicken, then its a cheap place and you're probably going to get sick.
Its not a water/oil polar/non-polar extraction like in o-chem class or something like that, or even microscopic contamination from using the same tools or whatever, its just big ole chunks of batter flaking/falling off and then physically happening to land on the next thing thats fried, like maybe your "GF" fries.
"I used to get french fries and they'd be hit or miss"
Culvers, well, at least the local one, never ever uses the same fryer or same fryer oil to make fish/chicken and fries, therefore their fries are pristinely pure nothing but veg oil and potato. Frankly I like french fries that taste like potato instead of chicken/fish fry night, so I prefer them too aside from my son's diet issues. On the other hand I can personally verify the deli I worked at as a kid (a long time ago) only had one fryer, so our fries got a little fried chicken batter/spice and fried fish flavoring. And the local Burger King is the same deal its all mixed together, ick.
"somebody told me fried stuff _always_ has gluten, which I didn't really understand, but I mean, I'm not a cook"
Kinda true but also kinda false. The absolutely cheapest way to get a crispy battered crust on a fried food is wheat. So guess what the only breading choice is on the general market. All non-GF batters are wheat based because its cheap. If you're willing to pay like 5 cents per serving more you can use a variety of GF rice flour / corn flour / who knows what flours, to make a crispy batter at home. We do home fish fry day (outside) a couple times per year. Much like all non-specifically-GF frozen baked meats (lots of tap dancing around just calling them mcnuggets or battered fish sticks/filets) contain wheat flour, but that doesn't mean the Ians GF nugget/stick products don't exist.
Also as a guy who does a heck of a lot of cooking because I like to, frying does not equal breaded meat. I can fry sausages or hamburgers or homemade hand sliced potatoes all day and no breading means no wheat. On the other hand cross contamination could be an issue, so I can't fry wheat pancakes on the frying pan and then use the same pan without through cleaning to fry my GF son an "GF" egg. I sure as heck can't use the same spatula. This kind of thing over the past decade makes the whole family GF even though only my son has a medical diagnosis... I only eat gluten containing junk food at work or when going out alone.
"don't go to restaurants that serve steak very often"
Well yeah OK. Now realize there are $300/plate steakhouses which I do enjoy visiting on a semi-regular basis but we also go to a lot of $15/plate places. In other words you can go to the "Texas Roadhouse" chain about 20 times as often as some place with a french name you can't pronounce and a wine list that needs reservations.
I/we have had pretty good luck at buffets and they're pretty cheap? Fruit is nature's junk food, you can get fat eating bag after bag of grapes but I don't think its biologically possible to get fat eating iceberg lettuce and celery. So put lots of fruits on your "salad bar salad" if you're hungry.
Sushi, hold the (wheat based) soy sauce and we've had good luck, then again they've gotten "trendy" such that a roll is now like $10. Also Sushi is pure binary love/hate either you'd eat it all day if permitted or be totally grossed out.
We've had good luck with boiled seafood, hold the garlic bread, but lobster can get expensive in some parts of the country.
Whoops forgot to mention another good way to contaminate "pure french fry oil" is with battered french fries especially those curly things. "MOST" frozen french fries are pure potato with a little oil so they psuedo-fry if you bake them, and sometimes a little food coloring/carmelized sugar (weird but true). But you can buy battered fries and that is GF trouble. So its possible the local burger king does segregate chicken oil and fry oil, but they fry wheat battered fries in the fry oil, thus not GF. My local Culvers does not sell battered fries, so...
Thanks a lot for all your words of wisdom! I really appreciate it.
Regarding sushi: I've found that if I get cheap sushi (like the kind in a cafeteria or supermarket), it often makes me feel like crap. So they must be slipping something in there made of gluten. Any idea on what that is and how to avoid it? (Of course, the easy answer is "don't eat cheap sushi," and that works pretty well.)
My son has had celiac disease all his life, from a long time before it became trendy and it'll last till the end of his life a long time after its off the front page. He's one of the 1 in 100. This was before wikipedia. Perhaps a future dating system will number years as in BW before wiki and AW after wiki. Anyway needless to say I recall quite clearly, his pediatrician FINALLY did a blood test as a last resort (celiac is not a profitable disease to treat, therefore rule out everything more profitable first) which had wildly high results, then refer to gastroenterologist who knocked him out and did an endoscopy, "yup all inflamed and Fed up in there" then trial run gluten free diet and his blood antibody numbers started dropping and he nearly instantly had a normal digestive system. And like yourself he gets horrifically sick a couple hours after eating gluten containing foods and it lasts and closely resembles a very, very bad food poisoning incident (like to the point of dyhydration danger, and yes he has been poked with IVs in the ER for this). So I donno about all this "there's no tests" this is extremely heavily trodden ground. Your primary care doc might be pretty ignorant of this specific disease but I can't imagine a gastroenterologist being confused, this is after all kinda their bread -n- butter...
On the other hand I donno if you technically "need" a medical diagnosis. I'll spare you the details, but shellfish and plain ole chicken eggs don't seem to be terribly well tolerated by my digestive system... solution? I don't eat them. I don't need a trendy diet or diagnosis or a pill or celebrity endorsement, I just don't eat lobster or fried eggs.
Note that wheat provides approximately nothing valuable to your body other than empty calories, so feel free not to eat it. Also almost all junk/highly processed foods are stuffed with wheat as a filler so your health will most likely dramatically improve if you stop eating wheat. The reason trendy actresses feel better after stopping wheat is not the lack of wholegrain bread but the lack of twinkies, not the lack of soy sauce but the lack of an entire pan of lasagna in one sitting, etc. Its not at all like giving up citrus or giving up meat where you have to put at least a minimal amount of care into making sure you don't end up with a major nutritional problem.
BTW his whole digestive system got messed up and he's also allergic to soy and milk casein proteins. Supposedly if you "tough it out" for a couple decades you can get cancer from the constant inflamation. Also his growth was pretty stunted until he got a proper diet (at which point he started growing so fast I swear you could watch him get taller). So get this checked out. I may not be a medical doctor, but it doesn't take a PHD to figure out if it makes you sick, don't eat it.