I Just Want To See What Happens ?

[HeyItsA]

So it's been about a month now and I feel great! But...... since I wasn't actually diagnosed as Celiac, I am so tempted to just try a piece of bread or whatever, to see if that is/was the case.

I know that by default, me feeling better, that it most likely was gluten, but that not actually "knowing thing", is driving me CRAZY!! *pulling out hair* I just want to take a piece of bread, eat it, wait and see what happens, but I am so scared to. Knowing the feeling of the pain, is enough to get over it real quick.

Has anyone else felt like this? What did you do? Did you take the test?

I really am interested in knowing everything

Thanks all!

[happygirl]

I did it.

It was brownies.

I learned my lesson and it solidified it for me. Accidental glutenings reinforce it also.

[ShayFL]

Accidental glutenings were enough for me.

[ohsotired]

Every. Single. Day.

I was dx'd as having "a mild case of Celiac Disease", but because I carry a gene, not because of antibodies in my blood (wasn't consuming enough gluten prior to blood tests).

So I keep thinking "Just one [insert glutenous whatever here]." But I've also glutened myself accidentally a few times (only been at this for about five weeks), and I know how THAT feels. I don't really want to find out how I'll feel if I go full bore and do it on purpose.

I'm not advocating it, but if you're self dx'd and you go for it and get sick, I bet you'll never do it again.

[mslee]

yes, it was a Mimi's muffin I had just been Dx and did not realize how serious this is, also did not realize Mimi's has a gluten free menu (it contains no muffins )

...yes never doing that again. EVER.

[ravenwoodglass]

So it's been about a month now and I feel great! But...... since I wasn't actually diagnosed as Celiac, I am so tempted to just try a piece of bread or whatever, to see if that is/was the case.

I know that by default, me feeling better, that it most likely was gluten, but that not actually "knowing thing", is driving me CRAZY!! *pulling out hair* I just want to take a piece of bread, eat it, wait and see what happens, but I am so scared to. Knowing the feeling of the pain, is enough to get over it real quick.

Has anyone else felt like this? What did you do? Did you take the test?

I really am interested in knowing everything

Thanks all!

I actually was ordered to do this by my MD (allergist). I was on an eliminiation diet. We didn't know I was celiac at the time, well actually the allergist was pretty sure it was celiac but he didn't say anything till after I had added gluten back in and gotten very sick. What you are talking about is a gluten challenge. If you do decide to do this make sure you add the gluten in for either 7 days or until you react. The reaction may be delayed, that is the reason for the 7 day advice. It did take 3 days for me to react, gut wise, and others may see the delay in D also but some of us will have the tummy effects on the first day. A second challenge a month after the allergist diagnosed me was prescribed by my GI for confirmation. That 2nd challenge almost killed me so if you are far advanced in the disease process once hopefully will be enough.

[DanaDee]

Every. Single. Day.

I was dx'd as having "a mild case of Celiac Disease", but because I carry a gene, not because of antibodies in my blood (wasn't consuming enough gluten prior to blood tests).

So I keep thinking "Just one [insert glutenous whatever here]." But I've also glutened myself accidentally a few times (only been at this for about five weeks), and I know how THAT feels. I don't really want to find out how I'll feel if I go full bore and do it on purpose.

I'm not advocating it, but if you're self dx'd and you go for it and get sick, I bet you'll never do it again.

I don't understand how a medical professional made a Diag of " a mild case" You either have it or you don't? It's all or nothing with celiac disease, unless you are gluten intolerant, that is different? I think they meant you have it, it just wan't yet at a level where it was doing as much damage as it could, right?

[dksart]

Don't do it! Some people have NO immediate response, but gluten still does the long term damage.

Just wait. You will most probably get accidentally glutened soon enough. Everybody screws up in the beginning, still unsure of how to find hidden gluten. Some 'natural flavors' will be hiding in your favorite chips or 'hydrolyzed protein' in your shampoo.

Once you realize how sick you can become and how long the effects linger after you get glutened, you'll never want that to happen again. It's not just the obvious digestive, mental and pain issues, but the longer term immune response it causes.

Within 15 minutes I get a funny stiffness in my jaw. Then I get the foggy headache which eventually turns into mental confusion, exhaustion and diminished motor skills. I get severe intestinal distress accompanied by terrible bloating and gas, then really urgent D or long lasting C. The next morning I wake to excruciating pain and joints so swollen and stiff, I need help out of bed. I sometimes stay there for days. Usually I get sick 2-3 days later. Sometimes it will just be a cold but a few times I got the flu which lasted over two weeks.

[msmini14]

I went gluten-free in Feb of 08, did great until 3/15/08 lol. The last day I will ever consume gluten. I went to my friends daughters b-day party. They had my favorite cupcakes and frosting, along with pasta and garlic bread all of my used to be favs. Well I was already feeling a bit ill from antibiotics I was taking and it was my first social outing since being dx. Well I caved and decided, why not? I ate so much gluten it was unreal! I went on a binge. Never ever again! I didnt have digestive problems until the next day and that lasted for a week. I had a horrible migraine that night, I couldnt sleep I had to lay there in the dark my head hurt so bad. I never got a migraine before finding out about celiac, just digestive problems, crazy how the body reacts differently now.

My mom used to tell me, I am sure you can cheat every now and then. I thought about it before I knew how much damage it did to my body.

Been gluten-free since 3/15/08, will not ever consume gluten on purpose ever again. If you need to prove it to yourself, I say try it. You will learn from it trust me lol.

Please no one get upset from the above comment, you never know until you try.

[HeyItsA]

I went gluten-free in Feb of 08, did great until 3/15/08 lol. The last day I will ever consume gluten. I went to my friends daughters b-day party. They had my favorite cupcakes and frosting, along with pasta and garlic bread all of my used to be favs. Well I was already feeling a bit ill from antibiotics I was taking and it was my first social outing since being dx. Well I caved and decided, why not? I ate so much gluten it was unreal! I went on a binge. Never ever again! I didnt have digestive problems until the next day and that lasted for a week. I had a horrible migraine that night, I couldnt sleep I had to lay there in the dark my head hurt so bad. I never got a migraine before finding out about celiac, just digestive problems, crazy how the body reacts differently now.

My mom used to tell me, I am sure you can cheat every now and then. I thought about it before I knew how much damage it did to my body.

Been gluten-free since 3/15/08, will not ever consume gluten on purpose ever again. If you need to prove it to yourself, I say try it. You will learn from it trust me lol.

Please no one get upset from the above comment, you never know until you try.

Totally not upset about that comment

I think the whole thing is that since I was advised by mr dr. to "try" it and see how is goes is what is bringing on the idea.

I remember the pain and very unhappy, uncomfortable, however you want to describe it feeling and DO NOT want to go there (at least not on purpose)

Basically, the thought just keeps popping into my head, or more like the devil on one shoulder and the angel on the other.

Thanks so much for all the replies. Reassurance is definitely needed.

[CaptainObvious]

I have been gluten-free for about a year and a half (have excaped with just a few mild glutenings early on because I am over-careful). Being a scientist, I think about everything as an experiment - myself included! Probably not the healthiest, but oh well.

So, that said, of course I started wondering how my symptoms would be different now than they were before, all spurred on by the fact that we will soon be taking a 2-week vacation to the caribbean which will include lots of sea kayaking, snorkeling, hiking, and other activities where glutening symptoms could be "troublesome." I wanted to know what would happen in a worst case scenario (getting majorly glutened or having to eat something that I know is not safe due to nothing else being available).

I spent a week determining what would be a good thing to eat that would decrease the number of variables and isolate any effects to gluten and not extra grease, new food combinations, etc (yes, I am that big of a nerd). I decided on a sandwich from Jimmy Johns for dinner on a Friday. I used to love their bread, and figured that since I eat all the other ingredients that would be on the sandwich all the time, it should be only the gluten that would affect me.

So, to make a long story not quite as long, I thought I was ok for a few hours, until the dreaded gasiness started, then the migraine all day Saturday and Saturday night (which I never had before), then the dopiness for the next 4 days and the "uh-oh" feeling in my belly after eating anything from Monday through Wednesday, then some lovely constipation.

At least now I know the "timeline" of effects so If I get glutened I know when to avoid doing things that require balance (no rock climing), good driving skills (they drive on the left in teh Virgin Islands!) or a nearby bathroom (no remote snorkeling/kayaking).

Even though I know that eating gluten on purpose is not a good idea, I think I feel better knowing what to expect next time I am more-than-minorly glutened, and since I, too, was not given a "real" diagnosis (although doc did recommend going gluten-free), it does make me realize that it is not all in my head.

[JNBunnie1]

I have been gluten-free for about a year and a half (have excaped with just a few mild glutenings early on because I am over-careful). Being a scientist, I think about everything as an experiment - myself included! Probably not the healthiest, but oh well.

So, that said, of course I started wondering how my symptoms would be different now than they were before, all spurred on by the fact that we will soon be taking a 2-week vacation to the caribbean which will include lots of sea kayaking, snorkeling, hiking, and other activities where glutening symptoms could be "troublesome." I wanted to know what would happen in a worst case scenario (getting majorly glutened or having to eat something that I know is not safe due to nothing else being available).

I spent a week determining what would be a good thing to eat that would decrease the number of variables and isolate any effects to gluten and not extra grease, new food combinations, etc (yes, I am that big of a nerd). I decided on a sandwich from Jimmy Johns for dinner on a Friday. I used to love their bread, and figured that since I eat all the other ingredients that would be on the sandwich all the time, it should be only the gluten that would affect me.

So, to make a long story not quite as long, I thought I was ok for a few hours, until the dreaded gasiness started, then the migraine all day Saturday and Saturday night (which I never had before), then the dopiness for the next 4 days and the "uh-oh" feeling in my belly after eating anything from Monday through Wednesday, then some lovely constipation.

At least now I know the "timeline" of effects so If I get glutened I know when to avoid doing things that require balance (no rock climing), good driving skills (they drive on the left in teh Virgin Islands!) or a nearby bathroom (no remote snorkeling/kayaking).

Even though I know that eating gluten on purpose is not a good idea, I think I feel better knowing what to expect next time I am more-than-minorly glutened, and since I, too, was not given a "real" diagnosis (although doc did recommend going gluten-free), it does make me realize that it is not all in my head.

Fruit & veggies are naturally gluten free! So's meat cooked in a clean pan. There's almost always SOMETHING you can eat. I long ago decided to simply go without if I couldn't be sure, I've had some hungry days, but it's better than being miserable for a month (for me).

[Mtndog]

Totally not upset about that comment

I think the whole thing is that since I was advised by mr dr. to "try" it and see how is goes is what is bringing on the idea.

I remember the pain and very unhappy, uncomfortable, however you want to describe it feeling and DO NOT want to go there (at least not on purpose)

Basically, the thought just keeps popping into my head, or more like the devil on one shoulder and the angel on the other.

Thanks so much for all the replies. Reassurance is definitely needed.

I'm pretty sure, whether they'll admit it or not, most of us think about it. I was gluten-free for 8 weeks before I had to do a gluten challenge for my biopsy. I thought "Sweet! I get to eat pizza, bread, pasta and cake for the next 14 days!" I gave up after 10 because I felt so hideous and I ended up in the ER two days after the biopsy because I had such incredible cramps from constipation.

Never again (on purpose anyway)!!!

[HeyItsA]

Thanks everyone for sharing. I do think about it pretty much everyday, but at the end of that day, decide not to. I am too scared to try, especially after reading the replies. I feel to good now to go backwards.

Thanks again for your input and help.

You guys rock!!! :)

[darlindeb25]

I never wanted to cheat, never wanted to see what would happen. Did I still crave foods I can't have anymore, ABSOLUTELY, and after 8 yrs, I still do. Last January, I was glutened by an OTC med, and I was sick for 3 months, lost 24#. No, I never need to check and see if I really can have gluten!!!

[kim:)]

So it's been about a month now and I feel great! But...... since I wasn't actually diagnosed as Celiac, I am so tempted to just try a piece of bread or whatever, to see if that is/was the case.

I know that by default, me feeling better, that it most likely was gluten, but that not actually "knowing thing", is driving me CRAZY!! *pulling out hair* I just want to take a piece of bread, eat it, wait and see what happens, but I am so scared to. Knowing the feeling of the pain, is enough to get over it real quick.

Has anyone else felt like this? What did you do? Did you take the test?

I really am interested in knowing everything

Thanks all!

My parents tested me when I didnt know, and hey I got sick! And extremly mad!!! This was simply because a lot of the time things like this can be all made up in your mind and so to test if it was really all in my mind or not they gave me regular waffles when I thought I was eating gluten-free waffles. It kinda stunk, but at least I knew for sure that I really was allergic to wheat. Also I was told I couldnt eat oats and malt. So one day I tryed oatmeal and got sick, but then a few days later I ate malt and realized I didnt get sick! So I have taken many tests. And now I know exactly what I can and cannot eat! Its up to you though! Getting sick does stink!! But to me to be able to eat more, I was up for the challenge!

Good luck in the decision!

[ksymonds84]

So it's been about a month now and I feel great! But...... since I wasn't actually diagnosed as Celiac, I am so tempted to just try a piece of bread or whatever, to see if that is/was the case.

I know that by default, me feeling better, that it most likely was gluten, but that not actually "knowing thing", is driving me CRAZY!! *pulling out hair* I just want to take a piece of bread, eat it, wait and see what happens, but I am so scared to. Knowing the feeling of the pain, is enough to get over it real quick.

Has anyone else felt like this? What did you do? Did you take the test?

I really am interested in knowing everything

Thanks all!

I had to do the challenge for the elimination diet and felt so horrible that I didn't purposely do any gluten again until...too much wine one night and chocolate donuts were on the counter! I didn't react the next morning (my usual reacting time if I get cc at dinner) and thought I got off very lucky but two days later while at work...BAM major D. I felt so miserable that I know I won't try that again anytime soon. I've also watched my wine intake since So if you do decide to try it (I don't recommend tho, it can sometimes take up to 5 days to react so don't think you got off scott free if you don't respond as you usually do.

[IMWalt]

Yes, I have done it. Did it last night as a matter of fact. My company sponsers a wine tasting dinner at a great resteraunt, and I had some brie in puff-pastry and some baked alaska. I have done similar things once in a while. The funny thing is, my results vary. Sometimes I will get major D the next AM after a very minor amount of gluten. The next time I will eat a bunch and then only the cramps and gas, and then not always right away. Usually I will have loose stools for up to a week, and the gurgling in my intestines. Sometimes frequent urges to find the nearest toilet, only to find it was justa huge amount of gas. Sometimes a dull headache, almost like a hangover for up to a week. To me, that's one of the things that is most frustrating. I don't understand why my reaction is not the same every time?

Walt