In Hell

[newyorkdave]

IN HELL....

when I don't eat gluten. More and more I am aware of the "opiate-like" qualities of gluten. I JUST CAN'T GIVE THIS STUFF UP. And by now means am I weak-willed. I have given up smoking (3 packs a day), sugar, alcohol, even caffeine (the hardest) - but gluten IS SO HARD to give up.....

Being that I have not received an official diagnosis, should this be seen as a sign that gluten is bad for me?

When I go gluten free, here are the things I experience, if anyone can relate, please let me know:

Paler skin

Moderate to severe depression

Lack of sexual desire

Decreased ability to get erections (embarrassing but I'm being honest)

Loss of hope

Irritability

HAS ANYONE experienced any of these after going gluten free, and at what point did those symptoms go away? The longest I have been able to go gluten free is probably 10 days at the most................

[gfp]

Dave, all I can tell ya is its like giving up smoking...

lets take em in a different order

1/Moderate to severe depression

2/Irritability

3/Loss of hope

4/Lack of sexual desire

5/Decreased ability to get erections (embarrassing but I'm being honest)

6/Paler skin

1-3 are all depression.... or different ways of wording it...

4-5 are very normal symptoms for depression

6/ Are you leaving the house?

You gotta get past those 10 days .. and you were probably at the cusp... its 3 days apparently for cigs but I think 10 is more like it for gluten. Your body has to start to self regualte all over again....

I can add another 20 broad depression related symptoms... inability to watch Lassie without crying... (embarassing I know)... or even some stupid program...

I personally beleive many of the symptoms of eating gluten are actually withdrawal symptoms...

[SunnyDyRain]

I hear you completely! I was diagnosed on friday.. I spent saturday getting drunk (I was in Atlantic City... Free drinks and Gambling get me going!) Sunday crying, and yesterday bingeing on my fave gluten products. Today started my gluten free life, I already gave into a potatoe chip that i didn't check to make sure it was ok, and a girl scout cookie. It's only 2pm!

Last night as I was enduring the big D as is usual when I eat Gluten, i asked myself... is this worth eating gluten? I have to admit, I'm not sure. But this is what i'm doing. I'm giving myself 3 monthes. In those 3 monthes I will re-evaluate how much i'm missing gluten products vs how much better I feel.

I think I owe it to myself to find out how good I can feel without it vs how much of my addiction to gluten is "carb addiction".

[VioletBlue]

IN HELL....

when I don't eat gluten. More and more I am aware of the "opiate-like" qualities of gluten. I JUST CAN'T GIVE THIS STUFF UP. And by now means am I weak-willed. I have given up smoking (3 packs a day), sugar, alcohol, even caffeine (the hardest) - but gluten IS SO HARD to give up.....

Being that I have not received an official diagnosis, should this be seen as a sign that gluten is bad for me?

When I go gluten free, here are the things I experience, if anyone can relate, please let me know:

Paler skin

Moderate to severe depression

Lack of sexual desire

Decreased ability to get erections (embarrassing but I'm being honest)

Loss of hope

Irritability

HAS ANYONE experienced any of these after going gluten free, and at what point did those symptoms go away? The longest I have been able to go gluten free is probably 10 days at the most................

I feel much better now. I spent the first month after going gluten free crying. Guess it's not just a girl thing after all As for sexual desire, that had been non-existent for over six months prior anyway because I was so physically ill, so I didn't notice. That returns by the way. At least that's been my experience. The irratability finally went away too.

It's like a death. You have to grieve. There's no way around it. You'll experience numbness, denial, isolation, anger, depression and finally acceptance. I'm working on four months now. It does get better.

Violet

[CarlaB]

Dave and Sunny,

I would recommend being sure you're 100% gluten-free ... check everything. The reason is that the immune reaction starts whether it's a crumb or a cookie, so you'll go through the same withdrawal over again. In the same way 1 cigarette would make quitting more difficult, getting any gluten will make it more difficult for you.

There are some good gluten-free baking mixes out there that might help. I like Namaste brownies. I make them even for non-gluten-free people, who gobble them up and can't believe they're gluten-free.

I take St. John's Wort for depression and it helps a lot. If you take it, be sure to ask your pharmacist about any interactions with other drugs you're taking.

It does get better. It becomes second nature after a while and actually gets to be pretty easy.

Dave, you might look up an old thread the guys had a couple weeks ago about erectile disfunction/celiac. Just do a search. I can't tell you all about the thread since it didn't apply to me, but you might find some useful information in it. I am guessing being gluten-free will help. It seemed to help me a lot in the desire area.

[Ursa Major]

Dave, as gfp said, you NEED to get past the ten-day-mark. It is likely that the withdrawal symptoms will go away after two weeks. Imagine, you gave up four days before you would have been okay!

Try doing it one day at a time. Every morning you tell yourself, "Today I will not eat any gluten!" Don't even look at the long run, it is just too daunting.

And as Carla said, make sure you have some fabulous gluten-free treats around. You don't want to eat a lot of those after your withdrawal symptoms stop (you may gain a lot of weight). But grabbing a treat every time you're tempted to give in your craving for gluteny stuff will help in getting you through.

Also, purge your house of stuff with gluten, if possible. If you remove the temptation, you may find sticking to your guns easier.

[StrongerToday]

Dave, as gfp said, you NEED to get past the ten-day-mark. It is likely that the withdrawal symptoms will go away after two weeks. Imagine, you gave up four days before you would have been okay!

Try doing it one day at a time. Every morning you tell yourself, "Today I will not eat any gluten!" Don't even look at the long run, it is just too daunting.

And as Carla said, make sure you have some fabulous gluten-free treats around. You don't want to eat a lot of those after your withdrawal symptoms stop (you may gain a lot of weight). But grabbing a treat every time you're tempted to give in your craving for gluteny stuff will help in getting you through.

Also, purge your house of stuff with gluten, if possible. If you remove the temptation, you may find sticking to your guns easier.

To borrow a phrase from another support group, it's just "one day at a time". It's not nearly so overwhelming to just focus on today. Not only keep special gluten-free treats around, keep things that are naturally gluten-free around. Like fruit, juice bars or popsicles, even most ice cream. My friends will tell you I was a complete witch (although she used a different word, one that rhymes ) the first few weeks. But now it's over 1.5 years later and it's like WOW, it's so worth it to me.

[newyorkdave]

Wow thanks so much for your comments. they have made my morning!

Carla, as far as being 100% sure I'm gluten-free, are you saying that because you didn't experience negative symptoms when you quit gluten? Cause I read that only 50% of people get an opiate-like effect from it. Seems to me that if you're not in that 50% you're going to feel great when you go off gluten....

[newyorkdave]

I hear you completely! I was diagnosed on friday.. I spent saturday getting drunk (I was in Atlantic City... Free drinks and Gambling get me going!) Sunday crying, and yesterday bingeing on my fave gluten products. Today started my gluten free life, I already gave into a potatoe chip that i didn't check to make sure it was ok, and a girl scout cookie. It's only 2pm!

Last night as I was enduring the big D as is usual when I eat Gluten, i asked myself... is this worth eating gluten? I have to admit, I'm not sure. But this is what i'm doing. I'm giving myself 3 monthes. In those 3 monthes I will re-evaluate how much i'm missing gluten products vs how much better I feel.

I think I owe it to myself to find out how good I can feel without it vs how much of my addiction to gluten is "carb addiction".

Okay - carb addiction? I think there is such a thing as sugar addiction, but that's because carbs essentially become sugars. You NEED carbs for your brain to function, as well as other things, so I personally think one should eat at least as many grams of carbs as they do protein.

Secondly, VERY few potato chips have gluten in them. most of the Lay's chips are gluten free, Dirty Chips, WISE chips and I'm not sure but I would be surprised if kettle chips have gluten.

Potato chips are one of the few things that are enjoyable when you can't eat gluten.

But they ain't gluten. It doesn't give me the same high.

If you're denying yourself gluten that is one thing. If you're denying yourself ANY kind of carbs, that is almost impossible, not to mention unhealthy, to stick to.

[tarnalberry]

When you go gluten free, what are you eating? What are you thinking about? What are you doing? Basically, what other changes occur in your life.

Irritability, when you start the diet especially, seems quite normal to me. You're basically going from "here's something that safe - nay, healthy - for everyone, and is hence everywhere, and I'm saying it's total poison to me". Then navigating a wheat-filled world while avoiding it... It's challenging. (No, I'm not saying there isn't another reason for irritability, particularly in light of a possible neurologic effect, but I'm saying not to overlook this totally normal reaction as well.)

If you're thought process takes you in that direction, the thoughts of having to deal with navigating that gluten-filled world for the rest of your life may well make you feel depressed. If you are ever prone to other situational occurrences of depression, or have dysthymia, the change in diet and the pressures it puts on you could be a trigger for another occurrence.

The fallout of those may well affect your sexual desire - who easily gets in the mood when they're irritable and depressed? (Though, of course, one thing that strikes me is that all of these also fit the bill of a testosterone deficiency.)

All in all, getting a bit farther into the diet is crucial. If that means clearing out your house of gluten, and only eating what you've made in your (newly gluten-free) kitchen, then so be it. Different people need different approaches.

[newyorkdave]

(Though, of course, one thing that strikes me is that all of these also fit the bill of a testosterone deficiency.)

yeah that's what i thought first, but i just had that tested and it's totally fine.

[gfp]

yeah that's what i thought first, but i just had that tested and it's totally fine.

Dave they all fit depression too.

All I can say is when I was at my worst I didn't even notice lack of sexual desire until I climbed out the other side. Looking back I definately did have it but at the time I was pretty much so out of it that it was the last thing on my mind.

My worst times post diagnosis were when I was getting "micro-glutened" you can look up "brain fog" in the posts here.

I went from someone who loved food to someone who feared it... and I just felt so bad I lost all interest in not only women but work, my future and pretty much everything.

Gluten acting as an exorphin is real... it also damages the endorphin receptors which means your body cannot regulate mood and to some extent sexual desire because when it sends out endorphins they are not properly taken up .. after a while it realises this and sends out some more... so your body gets increasingly mixed up. This basically makes it depressed, the chemical meant to increase our "happy state" is being produced but not properly adsorbed to its receptor. It takes time for those receptors to heal, until they do your bodies mood control is being screwed about... each time you get gluten again its sets back the clock..

The difference to nicotine withdrawal is the length.... and periodicity. Nicotine is a much shorter cycle whereas gluten/opiates takes longer.

[darlindeb25]

It's weird, when I read about some of you being so upset when you go gluten free--I wasn't. Of course, my sister went gluten free in March and I could see the improvement in her, so maybe it was my role model! I was so happy to feel better, I didn't mind not having gluten. In the beginning, I ate ricecakes with peanut butter and cottage cheese with fruit. Not all celiac's must give up dairy. My sister, nor I gave it up. My sister had yogurt for breakfast everyday.

Gluten is addictive to us, we do go through withdrawal. I didn't in the beginning, yet I did last summer. I mourned food so much, of course, I have given up a lot more than gluten. I eat no grains anymore except for my ricecakes.

This morning, it hit me I have been gluten free a year longer than I thought. Amazing what our minds do to us. I was so sure I went gluten free in July of 01, but now I realize, it was July of 2000. My sister told me it was, but I had to remember things that were going on to realize it. I have very rarely been glutened, most of my reactions have been to new intolerances.

Keep at it, don't give up. The alternative to gluten free is not a pretty future.

[gfp]

It's weird, when I read about some of you being so upset when you go gluten free--I wasn't. Of course, my sister went gluten free in March and I could see the improvement in her, so maybe it was my role model!

That makes complete sense... its like before I quit smoking (the 1st time) I thought I just couldn't do it... impossible etc. etc.

Somehow I ended up smoking again 2 yrs later... but the 2nd time was much easier... I knew it was possible and I knew after a while I'd feel "normal again"

A friend who smoked 60 a day has recently given up and he said he knew he could do it partly because he saw me do it...

If you combine this with perhaps you were so ill anyway .. it might help explain why you didn't get it then but did later...

Its like the old joke where someone complains to the Dr that their arm hurts and he jumps on theior toe and says "does your arm still hurt?" If you were so ill before gluten-free you felt SO BAD... then perhaps this could mask the withdrawal and the benefits outweighed it... and perhaps we all have different amounts of withdrawal too.

I was so happy to feel better, I didn't mind not having gluten. In the beginning, I ate ricecakes with peanut butter and cottage cheese with fruit. Not all celiac's must give up dairy. My sister, nor I gave it up.

Yep exactly....

My sister had yogurt for breakfast everyday.

Hmm. perhaps its lactose not casein... both yogourt and especially cottage cheese are full of casein but low in lactose...

Gluten is addictive to us, we do go through withdrawal. I didn't in the beginning, yet I did last summer. I mourned food so much, of course, I have given up a lot more than gluten. I eat no grains anymore except for my ricecakes.

Or you werte just so ill and at rockbottom perhaps the gluten withdrawal seemed minor..?

Keep at it, don't give up. The alternative to gluten free is not a pretty future.

Very true!

[CarlaB]

Wow thanks so much for your comments. they have made my morning!

Carla, as far as being 100% sure I'm gluten-free, are you saying that because you didn't experience negative symptoms when you quit gluten? Cause I read that only 50% of people get an opiate-like effect from it. Seems to me that if you're not in that 50% you're going to feel great when you go off gluten....

Only my GI symptoms got better gluten-free. I have Lyme Disease, but didn't find out until after a year on the gluten-free diet when my other, numerous symptoms didn't resolve. I also have bad neuro symptoms, but they ended up not being from the gluten.

The reason I made the comment about being 100% gluten-free is because most people who don't get better on the gluten-free diet either are not 100% gluten-free or have other food intolerances. There are, however, those of us with other issues contributing to our poor health as well.

It's also common for those with GI issues only to have ups and downs when they eliminate gluten. It just takes a lot of time to heal.