Just have anemia, do I need to be gluten-free?

[kaki_clam 15]

Last night I dreamt of Burger King Whoppers, Greasy Sweet and Sour Chicken with Pork Fried Rice and two egg rolls on the side....and Beef Wellington. With the exception of the Beef Wellington, which I have never had and only seen on episodes of Hell's Kitchen, I am easily able to make my own "whoppers" and my boyfriends says my gluten free chinese food is wayyyyyy better than take out! (he's right, it is really good) The problem is...it's all so much work. I just want to get me some take out...plop down in front of the tv and dig in. I live in a small town. There were three resturants that offered more than a plan burger patty and a baked potato with no sour cream and no butter on their "gluten free" menus....two of them have glutened me so that leaves just the one left.....Red Robin's..and although I love them, I want different. (if any of you live near a red robins..try them out, they are awesome and fall all over themselves everytime to ensure your meal is gluten free...you can even have the french fries!!!!!!)

So, this rant comes down to this....what will happen if I go out and get me some take out? I have been gluten free for 17 months (i just counted that out..didn't realize it had been that long)...and except for like two mistakes when i first started all those 17 months ago, I have been completely gluten free....I have never cheated. I am sure since I haven't eaten a whopper in so long I won't even like it....probably take two bites and chuck it....but if i do get it and i do eat the whole thing...bun and all (because it's not really a whopper without the bun)....how sick is it really going to make me?

[ravenwoodglass 1,346]

Well everyone is different but for me that would mean a migraine that lasts for days, a bout of severe, and I mean suicidal depression, followed by a few weeks of increased anxiety, a flare of my joint and muscle pain, severe stomach pain followed by severe painful D a day or two later with bleeding for three days after, a breakout of blistery lesions, brain fog and other neuro impact.

Would that be the effect for you? I don't know as I don't know what your reactions to gluten are. When you have been accidentaly glutened what has been your reaction? All said I would not advise deliberately glutening yourself.

Do you have a rice cooker or crockpot? You could get something going in the crockpot for days when you don't feel like cooking. Chicken and a baked potato will cook itself in the oven while you relax. Could you make extra of a few things and freeze portions for times when you don't feel like cooking? There are a lot of things you can do for those nights when your just to whipped to cook. One of my favorites is pizza. I keep a package of Kinnickinnick shells in the freezer along with Hormel pepperoni and sauce. Quick and easy.

[cassP 175]

ohhhhhhh i can totally relate to u- ive been thinking the same thing from time to time... wondering if one or two more cheats in my whole life would be ok.... there were so many things i never got to try for years i have been obsessed with the Puka Dog in Hawaii... it was on my bucket list.. and the Loco Moco.. and i never got to try them..

or that restaurant in Pittsburgh called Primanti bro... my aunt lives there, that was on my bucket list too- they use Italian bread for the sandwiches & stuff them with french fries

its tempting- because in the past- i COULD handle small amounts of gluten- i didnt have to run to the bathroom.. but even tho i would feel ok- i knew from observing my bathroom visits- that Lymphocyte stuff was going on... and towards the end- my reactions became more and more severe- the last time i ate (before going gluten free)-> i felt like i was going to have a heart attack..

& on top of that- ive also got Hashimoto's & Grave's- both affected by gluten

but dont think i dont daydream about indulging sometime...

[StacyA 6]

The first year I would wonder the same thing, but this celiac has wreaked havoc on my short-term memory - so I don't worry about back and stomach pain after getting glutened - I can handle that - I worry about small permanent lesions in my brain.

But on another note, can you PLEASE share any secrets you have with chinese food!! Every attempt of mine fails miserably. I tell my husband it's the MSG the restaurants use that makes their food taste better (MSG gives me a headache). In particular, I really miss the noodles with veggies from Mongolian Woc at the mall.

[kaki_clam 15]

The first year I would wonder the same thing, but this celiac has wreaked havoc on my short-term memory - so I don't worry about back and stomach pain after getting glutened - I can handle that - I worry about small permanent lesions in my brain.

But on another note, can you PLEASE share any secrets you have with chinese food!! Every attempt of mine fails miserably. I tell my husband it's the MSG the restaurants use that makes their food taste better (MSG gives me a headache). In particular, I really miss the noodles with veggies from Mongolian Woc at the mall.

I have a chinese food cookbook, one that is paperback that i bought by the registar at Michael's Craft store. It is at home and I am at my boyfriends, but I have made a note to get the name of it for you and will post it as soon as I get home next week. For noodles I use rice noodles http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Dynasty-Mai-Fan-Rice-Stick-6-75-Ounce/dp/B000H27I4C this brand...i get them at the grocery store for like 1.99..i eat them a lot because they are cheap. I also add frozen veggies to them, i like the thai blend that I buy at Wal-mart, they don't have sauce on them...just plain veggies, and then you can add any of these sauces also available at the grocery http://www.san-j.com/product_list.asp?id=2 for a quick meal (not sure if they are MSG free).

[txplowgirl 97]

So not worth it.

I have been gluten free 2 years now and had a craving the night before for a maple bar. Uhh, what was I thinking. I had 3 bites, that was it. Three bites couldn't hurt.

Here it is 2 nights later and i'm finally starting to feel a bit better. 2 hours after i had those three bites, felt like someone was stabbing me in the stomach with a knife. I was bent over double. Gas bad. Diareha most of the night. Fatigue, migraine, depression, and very irritable most of the day yesterday. Today, slight headache, cotton mouth, sore, queasy stomach and some fatigue.

Will not be doing that again.

[aeraen 24]

:channeling Mike Brady: "When you cheat, you only cheat yourself." :

This is one of those instances where that advice is so spot on. The aching sides, multiple rushes to the bathroom, not wanting to go out incase I need a bathroom RIGHT NOW, are simply so not worth it to me.

While there are things I miss, and as I said in an earlier thread, I miss convenience the most, I just feel so healthy now, I can't imagine giving that up for a piece of bread.

[Skylark 938]

Me? I may as well eat poison. Cramping, D for 4-6 hours, wake up the next morning exhausted and spend the next 2-3 days having panic attacks. Then the canker sores will break out in my mouth and I'll have those for a week. Totally not worth it.

In truth, I know all this from taking risks at restaurants and getting glutened. You'll only know how sick it will make you if you try. If you are gluten intolerant rather than celiac, it isn't terrible for you to do the experiment and find out. If you're diagnosed celiac, it's a bad idea as each glutenening triggers autoimmunity and damage.

[zus888 37]

If you are gluten intolerant rather than celiac, it isn't terrible for you to do the experiment and find out. If you're diagnosed celiac, it's a bad idea as each glutenening triggers autoimmunity and damage.

Based on what I've read, it can cause as much damage if you are non-celiac gluten-intolerant. You will still trigger an immune reaction - just not to your villi. If you are gluten intolerant, your immune system puts on an attack to the gluten you've ingested. Celiac is just another form of gluten-intolerance - not necessarily a worse form of it. Damage can still occur despite whether you have celiac or not. That's just based on what I've read, though...

[twe0708 7]

I tried that about 8 months of being gluten free by eating a donut and within an hour I had the worst flu like symptoms for the next 3 hours (vomiting/diarrhea) and in bed for another 2 hours. It made me so sick I would never do it again. I have been hit hard twice again on top of the first time and I still don't understand how it hits me so hard vs how others are affected. My body just tries everything it can to kick it back out of me and it's NOT fun!

[Skylark 938]

Based on what I've read, it can cause as much damage if you are non-celiac gluten-intolerant. You will still trigger an immune reaction - just not to your villi. If you are gluten intolerant, your immune system puts on an attack to the gluten you've ingested. Celiac is just another form of gluten-intolerance - not necessarily a worse form of it. Damage can still occur despite whether you have celiac or not. That's just based on what I've read, though...

Of course there is an immune reaction; that's the whole reason intolerance exists. Thing is if a person isn't celiac (which can be difficult to determine as the tests aren't great) the immune reaction appears to be transient inflammation rather than autoimmunity. If you're gluten intolerant and eating gluten all the time, the inflammation can be very troublesome. There are a lot of people here who know how bad chronic gluten-caused inflammation can be. Thing is, if you're gluten intolerant and have one fast food meal because you're testing your body's reaction, you may make yourself spectacularly sick but you're not going to create chronic inflammation from one meal.

There is a different issue at stake though, and it's the one a lot of people react to without realizing it. If you "cheat" once, are you going to do it again? And again? Knowing your reaction to gluten is important, as it helps you determine when you've eaten it by mistake. On the other hand rationalizing cheating over and over as "testing" will only make you sick again. We all struggle with this so whenever someone mentions cheating, there is a big backlash on the board. We are all fighting for willpower and self control in the face of pizza, donuts, and oreos, and it helps us to reinforce our own self control by responding to these threads.

[RahCreature 0]

is it worth it? Not to me I am tempted daily by my evil sweet tooth and pizza loving tummy but then I remember the 3 days of sleeping next to the toilet ( I have since bought a bucket) the brain fog and the fear of eating. I just order the burger with no bun it is not the same but it scratches the itch

[Takala 415]

I never liked that stuff very much anyway, that you listed.

Gaaah.

[Fire Fairy 26]

Amy's has some wonderful gluten free frozen dinners that fulfill my need for convenience food. Yummy, filling and not as expensive as many gluten free frozen meals.

For me cheating is not an option I get neurological problems with gluten exposure. For me it's totally not worth it. I think of gluten as a deadly poison.

[zus888 37]

Of course there is an immune reaction; that's the whole reason intolerance exists. Thing is if a person isn't celiac (which can be difficult to determine as the tests aren't great) the immune reaction appears to be transient inflammation rather than autoimmunity. If you're gluten intolerant and eating gluten all the time, the inflammation can be very troublesome. There are a lot of people here who know how bad chronic gluten-caused inflammation can be. Thing is, if you're gluten intolerant and have one fast food meal because you're testing your body's reaction, you may make yourself spectacularly sick but you're not going to create chronic inflammation from one meal.

....We all struggle with this so whenever someone mentions cheating, there is a big backlash on the board. We are all fighting for willpower and self control in the face of pizza, donuts, and oreos, and it helps us to reinforce our own self control by responding to these threads.

I haven't read that anywhere. My reading (and I only got my information from Healthier Without Wheat) suggests that gluten intolerance involves an immune response that involves JUST AS MUCH RISK as the one from celiac. The only difference being in celiac disease the immune system also attacks the villi. Any sort of chronic inflammation (which would also occur in a gluten-intolerant person) can lead to symptoms and diseases that are too long to list here. Based on the book I'm reading celiac disease is only one form (or one end result) of gluten intolerance and both should be treated with the same stringent adherence to a gluten-free diet. One is not more severe than the other.

[shopgirl 67]

Have you ever seen the documentary Super Size Me? That cured my fast food cravings long before I ever found out I was Celiac. Just driving by a McDonald's reminds me of that movie and turns my stomach.

[Skylark 938]

I haven't read that anywhere. My reading (and I only got my information from Healthier Without Wheat) suggests that gluten intolerance involves an immune response that involves JUST AS MUCH RISK as the one from celiac. The only difference being in celiac disease the immune system also attacks the villi. Any sort of chronic inflammation (which would also occur in a gluten-intolerant person) can lead to symptoms and diseases that are too long to list here. Based on the book I'm reading celiac disease is only one form (or one end result) of gluten intolerance and both should be treated with the same stringent adherence to a gluten-free diet. One is not more severe than the other.

This is not correct. I don't have time to pull references for people this weekend but I suggest you check out the recent IL-15 research. It is more recent than that book. Books are always out of date because of the fairly long time lag between writing and publication.

[ravenwoodglass 1,346]

If you are gluten intolerant rather than celiac, it isn't terrible for you to do the experiment and find out. If you're diagnosed celiac, it's a bad idea as each glutenening triggers autoimmunity and damage.

I looked through quite a few articles on the IL-15 research and didn't find anything that stated that gluten intolerance does not have autoimmune effects. Could you give us a link to the research that says with certainty that gluten intolerance isn't an autoimmune impact?

[rosetapper23 237]

I'm going to be bluntly honest here. I was completely gluten free for the first 18 months after being diagnosed as having celiac, and then I read an article that said that once the gut heals, a person might be able to cheat occasionally and have no reaction--not everyone, mind you, but a number of people in that so-called "study" apparently did not suffer from occasional cheating.

That said, I then proceeded to test the theory and eat my favorite brand of takeout pizza. Prior to doing this, I'd had trouble raising my ferritin level. After the pizza, my numbers plummeted almost to zero, and no amount of oral iron had any effect. I ended up on intravenous iron for several years.

Then last April, after seven years of being gluten free, I accidentally ate gluten at a potluck (the person had assured me that there was no gluten in it, and I was famished). Five weeks later, I suffered stress fractures in BOTH feet and was in extreme pain for the next six months because my doctor and an orthopedist could not figure out why my feet were causing me so much trouble. I finally researched it myself when I realized that the tendons might be involved. Sure enough, I found out that if a person is suffering from certain nutritional deficiencies (such as manganese, zinc, and silicon), you can end up suffering from something called "floppy tendon syndrome," which results in stress fractures of the feet. After I took supplements for manganese, zinc, and silicon, my feet stopped hurting after just a few days. After two weeks, I could even wear high heels again.

So...obviously, the lesson to my story is that you eat gluten at your own risk. If you damage the part of the gut where calcium is absorbed, your teeth will start to break. You could end up on intravenous iron for the rest of your life...or with shattered foot bones....or neuropathy....or migraines....or brain lesions. It's like playing Russian Roulette. Why take the chance? You've been given back your health! It's now up to you to safeguard it for the rest of your life.

[cassP 175]

i think most of us will agree that we feel pretty damn good- and have found substitutes for almost everything- that even taste better... and that its more the convenience that hurts the most...

i mean- what am i gonna do the next time i go to a music festival... or have been waiting in line all day, and am STARVED... im gonna have to eat the melted gluten free bar i snuck in.. instead of downing a Polish sausage in a crusty bun back when i was just doing Atkins/Bloodtype- i would have just eatin the sausage- but now we know there could be gluten in that too

just so annoying..

[zus888 37]

You mean this?

"The study, to be published early online Feb. 9, points to two chemical signals -- interleukin 15 and retinoic acid, a derivative of vitamin A -- as triggers for the inflammatory response to gluten, a protein found in many grains that causes celiac disease."

Sounds to me that they are talking about gluten intolerance that can lead to celiac. But I've not done a ton of research. Is there a specific place where all this research is located?

I also checked out the blog of the author of the book I'm reading and he has not changed his stance regarding celiac being one end result to gluten intolerance. Although I am very new to this, his reasoning seems sound and makes a lot of sense to me, especially since gluten-intolerance can lead to so many other issues (like, pretty much ALL the autoimmune diseases I have). I think celiac is just one other thing gluten intolerance can lead to. JMHO.

[zus888 37]

I also found this:

http://www.celiac.com/articles/22052/1/Could-a-Virus-Trigger-Gluten-Intolerance-Rates-Double-Among-Finns/Page1.html

which states:

"Gluten intolerance arises from an autoimmune reaction in the small intestine to the gluten protein found in wheat, barley and rye."

and:

"The researchers are hoping to use the genetic information to craft better screening tests for gluten intolerance, as up to 75% of people with gluten intolerance remain undiagnosed due to mild or atypical symptoms, and many with condition may unwittingly suffer damage to their intestinal villi."

Just from my limited research, it seems that all indications are that gluten intolerance leads to a number of other symptoms/diseases including celiac, and that it is all a result of an immune response.

[Camp Laffalot 9]

I hate to say this, but I'm having fun discovering new favorites that are as good as/often better than my old faves!

I was just diagnosed about a month ago, and while I'm guessing that I'm about 99% gluten free now, and feeling a bit better, I am having waaaaay too much fun trying all the gluten free stuff.

Some favorites: Any bread by Udi's, Bakery On Main "Granola", and those intense dark chocolate cookies by Pamela's Cookies*. The Glutino Pizza is handy to have in the freezer, too.

We went camping with friends this week and went out to dinner at a favorite seafood place where I have always ordered the fried softshell crabs. This time I had them naked and sauteed in butter and garlic instead, with a side salad, and they were a gourmet treat. Tonight I had a grilled sirloin burger with Cabot's Cheddear Cheese on a mult-seed gluten free English muffin, pickles, and some Frito Lays corn chips. LOVELY!

*I'm gonna need a 12-step program for Pamela's Cookies, I think..........

Hey, I'm an old lady (71) and if I can change my eating all around, so can you young 'uns.....and enjoy it, too! Don't go back to the pain.....go forward on a new adventure!!!!

Hugs all 'round the room!

[CarolinaKip 67]

I'm going into my 10th month gluten-free. I feel proud of myself for the struggle it has been. I can only speak for myself when I say, no I won't cheat. I really miss the things I love! I miss the famous BBQ sandwich and roast pork sammy around here, my mexican place, paneras, beer!! I miss a lot however, I don't miss being in pain 24/7 and feel like I was going to die because my gut throbbed with pain so much and no one could tell me why. I don't miss the migraines or the brain fog.....or being ill with the big C or days with D. I don't miss being just plain ill with everyone.

I'm sad some with being gluten-free, however, I'm determined to find new wonderful things to eat. To find places with gluten-free menus with staff that know gluten-free. I am excited that I found a support group! I'm hoping it will work out, I cannot wait to be around so many celiacs in one room or eat gluten-free pizza with them. Thinking my chances of CC will be less with so many gluten-free orders!! I'll let you all know.

I didn't ask for celiac, but here I am with it...I can stay sad or get positive with it...it's a challenge and I'm stepping up to it.

For me "what's it gonna hurt?" Being in so much pain and sick for at least 3 days, no food is worth that to me. Knowing I'm harming my body after being so good to it, nope, not for me...the pain and damage isn't worth any food. Think of it this way, for about 30 minutes of food pleasure, how many hours and days do you have to be sick and in pain. Just doesn't make sense for me.

[kaki_clam 15]

i didn't do it...i didn't cheat...i went out to dinner with my boyfriend's family and had a gluten free salad.