penguin

I read that for some people the tests won't be accurate unless they eat gluten for more than a year after being gluten-free for a while. What are you going to do if your tests show negative results for celiac disease after three months on gluten? Keep eating it for years, causing more damage, maybe even getting another autoimmune disease or cancer? Those are questions you need to ask yourself now.

My attitude right now is Celiac until proven otherwise. For some reason, nobody ever tested me for chron's or colitis or anything like that. My mom has been harassing me for at least a year to get tested for those. I also haven't been to see a gastroenterologist about the celiac yet, and I feel that I should. Even if the tests all come back negative, at least I know I'll have done everything I could to be definitive.

If I show negative results, I'll probably still go back to being gluten-free, or at least wheat free. My husband seems pretty confient that it's celiac, and I have more symptoms match celiac than anything else. I honestly don't know, but I have a lot of time to think on it. My GI appointment isn't even until June 15th. I'll cross the bridge when I get to it. Thanks for caring

If I was you, it is definitely best to get them to plate you up a meal. Buffets can be rather ddgy, obviously cross contamination is a big issue, because you wont know if people have used the tongues, etc to handle gluten-containing fod. Also, breakfast may well be croissants, etc, so best to ask for gluten-free cereal, like rice crispies, and orange juice, or grapefruit or something like that. Best to ask them to get you some gluten-free bread in, which you can have for lunchbox, and also maybe some gluten-free crisps, or pretzals. If I was you though, I'd ask for a contact number for the chef before you depart, and discuss it directly with him so you're both on the same page. He may also be able to offer suggestions. Usually expensive places are a lot better for coping with coeliacs. Good luck!

FYI Katie: I know you're in the UK, and that you're planning on coming to the US for holiday next year. Please be aware that Rice Krispies in the US ARE NOT gluten-free. They have barley malt in them. Don't know about Mexico though...

Does anyone know of any airlines at all that do gluten-free meals? I am coeliac, and am planning to go on holiday to Disney World, Florida next year, and obviously becuase of how far I am travelling, and I will be staying there a few weeks, I will need to keep any bread/snacks for when I am there. It's a package holiday and I wont be driving,as I wont be old enough to drive over there, so cannot just drive to gluten-free shops at my own convenience. I ahve already heard the restaurants there are really good, but am unsure about the flights. It's 9 hours. I've onyl been diagnosed for two years, whileI was still a teenager,and am still a bit uncertain about foods. I rang Virgin and they said they do gluten-free meals all the time, but she told me to bring my own food as well. She didnt sound very convincing. Does anyone know about any other airlines at all?

Personally, I would trust Virgin with my life. They have the best customer service of any airline, IMO. The clerk probably told you to bring your own food as well because there are a lot of channels your request has to go through, and there is human error involved and she doesn't want you to starve. Or if you're intolerant to other things. It's always a good idea to bring your own food travelling, if you're celiac or not. The American based airlines suck.

Also, contact Disney World and tell them your situation, so you'll be able to eat in the park. If you do a search on the forum here, you'll find a lot of information.

Hi!

Just know you're in good company. I just joined as well. I've been told I have a strong allergy to wheat, but I should just ignore it so it doesn't affect my life.

How has it NOT affected my life already?!

So, went wheat-free yesterday night, and so far - it isn't easy. Hoping I will grow to like more veggies and make it easier. I've already learned more here than most of the internet (where wheat allergy isn't as common as celiac, and even celiac information is contradictory.) Thinking of starting a blog, but don't know.

Thinking I might want to have my doctor test me for celiac...but I have the feeling she will say that I don't have it. Not looking forward to that fight.

Good to meet you all.

Lane

I noticed something wierd in your signature. You say that you had a strong wheat allergy intradermal, right? Most allergists won't do intradermal tests for food allergies because the majority of people react to the intradermal food allergens and it causes a false positive. Even the skin prick tests for food allergies aren't that reliable. Did your dr do a RAST blood test?

I have to ask--did eating this gluten food cause you any discomfort at the beginning? I've been wondering lately how I'd react to an actual serving of gluten, as opposed to the CC that normally causes the reaction for me. Like, when you ate the first thing this weekend, did you get sick at first, or not at all? Just nosy!

You know, it's funny, because if I'm cc'ed it sucks. The first thing I ate was a cherry turnover. The second I swallowed my stomach started making a lot of noise (like I angered the beast ) and that was it. I felt slightly stoned, but not much. I kept myself VERY well medicated with bentyl and pre-emptive immodium so I didn't let myself get sick! I was in a wedding and had to run around with the bride for 2 days, so I couldn't afford to be sick. It was wierd! I get more sick from cc, it seems. Maybe I just let myself get less careful or something prior to my little challenge. Maybe it's all in my head, who knows?

So I don't know what's going on. I'm majorly foggy today, but I even had a normal bm today after 4 days of full on gluten!!! It was the right color and everything, instead of the typical strained squash. It might have been from the immodium overload of the last few days. I think the locals are getting angry though, cause my lower half is feeling a bit wierd now, and I stopped medicating.

The classic ol' diabetes diet, which in the face of all the new "cutting edge" eating plans that bombard us through the years, has always stood the test of time in my perspective, and teaches that ONLY starchy veggies, ie. potatoes, corn, peas and legumes, have enough carbohydrate in them to count as a carb exchange. So I always count the other veggies as necessary antioxidant and vitamin sources, and not much else. I'm sure that train of though would work for hypos, as well...

Hypoglycemics are diabetics without all the pesky insulin stuff

I do use a scale , and the database, and Excel even!

When I was doing Aktins I was close to 100carbs a day to get to a stable condition, which is MUCH higher then recomeded on teh diet, prehaps that what I need to counter the hyposugar stuffs

I love that you tm'ed the hyposugar stuffs !!!

Remember basic nutrition with your "empty" carbs and your complex carbs. Ice cream is definitely empty carbs, added sugar or not. So are potato chips and the like. Whole grains are complex carbs (brown rice for example), as are fruits and some veggies. Those guys burn a lot slower than simple carbs

Welcome to the board! I'm glad you're being so proactive! Yay for you, it's a great idea!!!

Mrs. Leepers makes some hamburger helper like mixes. I had the beef stroganoff one and it actually wasn't bad! I added a little sour cream to help it out a little, but other than that, totally edible! Even the non-gluten-free DH enjoyed it. Here's a link to some of their stuff:

Open Original Shared Link

I went on a camping trip at a summer camp (w/ cafeteria, etc) and basically lived on rice cakes and peanut butter. You can also get shelf stable milk or soy milk boxes (like juice boxes) at the health food store. I also ate a lot of fruit.

Call me crazy, but any elective surgery that requires you to take liquid vitamins the rest of your life because you can't get enough nutrition from your foods doesn't sound like a miracle cure to me.

JMO

go to one of those pizza places that uses HIGH GLUTEN flour for their pizzas! LOL! (that's what they use at the pizza place my hubby works at.

I can understand wanting a firm dx and you do what you have to do, but please consider you could have other food intolerances or non celiac gluten intolerance as well. Was the diet helping you AT ALL? Did you eliminate dairy?

The funny thing is I don't even want pizza! I think I've grown to like the chebe stuff better!

The diet did help, some. I found that I could tolerate cultured dairy like yogurt and cheese, probably because the bacteria eats up the lactose in the culturing process. I was only gluten-free 4 mos and had the occasional normal bm, which DH pointed out is fantastic after 3 years of NEVER having one. My hypoglycemia improved, brain fog went away, etc. I'm not denying a problem with gluten. I just want to know if it's a non-celiac gluten intolerance, or actual celiac.

I have a few reasons for this:

1: insurance reasons, HMO's don't give a flip about intolerances, but they get concerned about celiac

2: I want to know if I'll pass it on to my kids

3: I want to know if I'm killing myself every time I get glutened 4: There are other things that can cause an elevated IgG, and I want to rule those out.

I know you care, Nini I appreciate that

I'm lucky that I have a dr that diagnosed with dietary response and inconclusive bloodwork, but it also unnerved me when she said celiac was a "faddy" diagnosis. Never hurts to get a second opinion, I just wish I would have done it before going gluten-free!!!

Where do you get it? The one that's available at Vitamin Cottage has barley in the ingredients list - which GREATLY disappointed me when I first read it!

Jeanne

That's such bs! I would reccommend getting one that is largely in Japanese, they have to put english labels on them upon import. I seriously doubt that genuine japanese pickled ginger would contain barley.

The "o" has no effect on pronunciation; it is not only silent, but it does not harden the "c" either. It is as af it wasn't there at all. There are a few words in British English like that. Sometimes, "cae" acts the same, as in Caesar. I guess the Brits have a surplus of vowels and are trying to use them up.

Thanks for that! I had wondered if it was pronounced "co-lay-ick", I'm glad it's not. I suppose it works like orthopaedic and it just looks fancier instead. I would hate to have to learn English as a second language, sheesh!

OK, how about just one question: How do you pronounce celiac disease. Sell aaaa ick? Sel iiii ick?

Sell- ick? Thanks.

Celiac = see-lee-ack

A good way to remember is silly-yak. Imagine a big goofy mountain yak!

I don't know how the Europeans pronounce it though, since they spell it Coeliac or some such with too many vowels.

Open Original Shared Link <- provides an audio pronounciation

Some years ago I had skin testing for allergies on the skin of my back. The entire area reacted so badly that it was impossible to tell what the allergen was that caused it. Anyone here have anything like this? Karen

I did the blood RAST tests for foods and also the scratch tests for foods and everything else. I reacted to everything but the foods and grass. I had a hard time metabolizing the mold allergens and ended up with a nasty cellulitis infection from it.

All in all a waste of time, I already knew I was allergic to everything in the air.

If you need to do it, you need to do it. Good luck! I've heard the equivalent of three slices of bread a day for three months.

I see many triscuits in my future

I'm going to carb overload for as long as I can...although I'm still only going to have pre-packaged gluten, I'm not contaminating my kitchen again. I'm still going to eat Tinkyada, since it tastes better anyway

everyone done making fun of my spelling?

You're just a product of the American educational system. If they taught kids properly on how to read phonetically in public schools, everyone would be able to spell. Programs like microsoft word don't help.

Chelse, please have a Big Mac for me and tell me how gross it really is We live on the same block as a donut shop, so my kids have their Saturday morning routine of walking over for some donuts (the kids who aren't gluten-free), then bringing them home to eat. They sit there and tell me they're disgusting. Clever kids! Fortunately, I do not have a sweet tooth, it's Big Macs that I miss!

I actually had a big mac for dinner on the way home from Arkansas last night! It was ok, I could only eat half of it. It doesn't live up to the hype

I had a McGriddle for b-fast today, now those I missed! Still ickier than I remember though...

My sweet tooth has mostly gone away, I'm all about salty! DH and I have eaten almost an entire loaf of Panera asiago cheese bread in the last day

No wonder I'm on the ceiling

I was out of town this weekend fot a wedding and had a gluten binge. Seriously, all gluten, all weekend long. Other than my head floating on the ceiling, I'm fine. I did take a lot of pre-emptive immodium, though. I'm not delusional. I do not think that I'm cured. I do not think that anybody anywhere cured me. I'm still eating wheat.

I've decided that I'm not comfortable with the way I was diagnosed. It's just that, if I'm going to have this on my record forever, and if I'm going to have trouble getting health insurance, and if I have to put up with this PitA lifestyle, I want at least two doctors to tell me I have it. I don't want to be 20 years down the line and find out I was misdiagnosed. I've decided I want a biopsy, and that I had better do it before all of the damage, if there is any, goes away totally. I also want the blood tests redone, while I'm purposefully eating a lot of gluten. I was pretty low gluten, without knowing it, before my blood test.

And my mom has been harassing me about getting a colonoscopy for a couple of years, since I've had chronic D for 3 years. Fair enough. I need to rule out Chron's disease and colitis before making this lifetime gluten-free commitment.

Questions: I have to be eating a lot of gluten for what? 3 months before a biopsy? How much gluten daily? How long do I need to be on gluten to redo a blood test? My office appointment with the new GI is on the 15th of June. He supposedly treats most of the Celiacs here. I don't want to deal with enterolab since it's cost prohibitive.

Thoughts?

And my husband is all for a mute button...

I think the reset button would come in handy with the husband too

nuts (for some reason I think peanuts are out)

It's probably because peanuts are beans (legumes), not nuts.

What does ppl < mean?

ppl = people

Hard learning a new language, isn't it?

HELP Im puking up anything I try to eat and sugar already low out of test strips now too .

That's why I keep coke or juice boxes around. I can't eat mid-crash or I'll throw up. Also, gatorade is sugary, but probably not sugary enough to bring you out of a crash unless you drink a lot of it, and then you'll throw up because you drank too much. It sucks. Go buy some juicy juice

I don't have any corn problems, in fact, eating corn seems to HELP my digestion. I feel really good digestively after eating popcorn, etc.

I've eaten roast that way 6000000 times, even since being gluten-free, and I've been fine.

I really think it's the tapioca, I notice too much at once makes my stomach hurt.

Dairy is fine for me, thus far anyway.

I'm feeling much better today, since I actually got sleep. Sometimes my stomach goes wierd on me anyway.

Thanks for all the help!!

Um not to be superficial or anything or make light of your illness Chelsea, but DID YOU WATCH Grey's Anatomy?? OMG - - - OMG - - - Denny is gone, Izzy - what will become of her? Can she possibly leave the show?? And - - McDreamy and Meredith....you know, the veterinarian and McDreamy's wife should be together, I think...

Ditto to all!!!

They can't get rid of Izzy. They can't.

I was shouting at the tv when Meredith and McDreamy went into that room. I'm so sick of that storyline, I don't want it to be Ross and Rachel in scrubs

My doctor told me that if everyone would just eat meat and vegetables, nobody would ever get sick.

I've said it before and I'll say it again, my Dr. is a smart woman!