Can't Stay Well

[cwj-tlj]

I was diagnosed 3 months ago. At first I felt better than I have in years. Then it seemed I couldn't stay unglutened. I have been sick once a week for 4 weeks. I have had MRI of the head to apease my DH and boss. 3 days ago I ordered a Sonic salad minus the cheese and opened it up only to find a fried onion ring. Normally ,I would have thrown it away however I was starving and just took off the ring and all of the surrounding lettuce. By the next morning I felt very fatigued and went to bed around 5pm and didn't get out of bed literally for 17 hours. The week before I got equally as sick on a work trip because of flouridex gel which only after I called the company they said there was a byproduct of gluten. Seriously this is really tough. Has anyone had this much trouble getting well. My doc says I am very sensitive now but this may get better with time.

Thanks in advance for listening.

Anyone else had problems with flouridex gel ? I guess I should have not eaten the salad. Is anyone else had a similar experiece? Thanks

[Lisa]

I was diagnosed 3 months ago. At first I felt better than I have in years. Then it seemed I couldn't stay unglutened. I have been sick once a week for 4 weeks. I have had MRI of the head to apease my DH and boss. 3 days ago I ordered a Sonic salad minus the cheese and opened it up only to find a fried onion ring. Normally ,I would have thrown it away however I was starving and just took off the ring and all of the surrounding lettuce. By the next morning I felt very fatigued and went to bed around 5pm and didn't get out of bed literally for 17 hours. The week before I got equally as sick on a work trip because of flouridex gel which only after I called the company they said there was a byproduct of gluten. Seriously this is really tough. Has anyone had this much trouble getting well. My doc says I am very sensitive now but this may get better with time.

Thanks in advance for listening.

Anyone else had problems with flouridex gel ? I guess I should have not eaten the salad. Is anyone else had a similar experiece? Thanks

Sonic had almost nothing that would be suitable for those of us with Celiac.

I noticed that this is you second post, so I wanted to welcome you to the Board.

Gluten can be a nasty monster, because it hides everywhere. If you try to go 100% gluten free to the best of your ability, it should show some remarkable changes. I do have to admit that in the beginning it is almost impossible to go 100%. There are way too many traps. But, you are three months into a suggested diet and it should be easier for you. The benefits for a gluten free diet far out weighs the pain and the fatigue, at least for me. It keeps me on the straight road.

I usually keep some gluten free snack bars in my purse or some nuts when I find myself not able to eat food...it beats throwing up and intestinal issues and three days of fatigue and brain fog.

You have to weigh you choices.

[Guest j_mommy]

I've been gluten-free since may 15 and have had some up and downs....but am much better than I was before. It is tuff getting teh hang of things and knowing you need to call/email companies to make sure of products!!

I also do what Lisa does and that's keep snacks with me. That way if I can't get home or to the office for lunch...I've got something to hold me over!

Good Luck!

[darkangel]

I've just about quit eating out for the time being and when I do, I don't do fast food. Even the stuff I cook at home, I keep simple, with few ingredients and stuff I KNOW is not a problem for me. It's an adjustment, but I think you'd be better off to play it ultra safe while you're in this highly reactive state.

If you do eat out and you order something like that salad and it comes out wrong, send it back. You need to be polite but very clear with your server that your food must be uncontaminated... they can't just pluck off the croutons or onion ring and send it back out to you... that it will make you very ill. No restaurant wants a lawsuit on their hands.

And I agree with the previous poster: always carry some gluten-free snack items in your purse or car so you're never caught with that desperate, hungry feeling that makes you take chances.

[cwj-tlj]

I've just about quit eating out for the time being and when I do, I don't do fast food. Even the stuff I cook at home, I keep simple, with few ingredients and stuff I KNOW is not a problem for me. It's an adjustment, but I think you'd be better off to play it ultra safe while you're in this highly reactive state.

If you do eat out and you order something like that salad and it comes out wrong, send it back. You need to be polite but very clear with your server that your food must be uncontaminated... they can't just pluck off the croutons or onion ring and send it back out to you... that it will make you very ill. No restaurant wants a lawsuit on their hands.

And I agree with the previous poster: always carry some gluten-free snack items in your purse or car so you're never caught with that desperate, hungry feeling that makes you take chances.

Thanks for all of the suggestions. I guess "discipline" comes to mind and "even a molecule will get ya!" Got to get better at going to the store more often so I'm not at risk. My life is totally unmanageable with gluten. In fact it's close to wrecking my life at this point. I would just love to get a few weeks under my belt so I can remember how great I feel when it's all out of my system. Going to keep it simple for a while. Thanks everyone and am grateful my condition is treatable at this moment.

[loraleena]

Darkangel, who is the singer on your picture - cute!

[darkangel]

Darkangel, who is the singer on your picture - cute!

That's the fabulous Ms. Jada Pinkett Smith, rock star, actress and wife of Will Smith.

To the OP, it took me many years to get to this point. It's really hard mentally to give up "normal" foods, particularly when family get togethers and all social stuff seems to revolve around food. I've shot myself in the foot many, many times, but now, I just find it easier to keep everything as simple as possible, even though I don't have a celiac disease diagnosis yet. People eventually realize you can't eat the office birthday cakes, etc. and stop bugging you about it. Anyway, in my experience, it takes a long adjustment period. Hang in there.

[covsooze]

Welcome to the board! You will get there, but it is tough at first. Stick around here and ask lots of questions if you're unsure about any foods etc and as the others have said, make sure you take snacks with you.

Susie x

[submarinerwife]

CW,

I was diagnosed a little over a year ago. The first few months are the worst I promise you it does get easier. After a few months of what you went through, I completely stopped eating out until I had gone a few months of no more symptoms. Then slowly started eating out a bit at a time, (no fast food they just don't care enough, and its too risky even the french fries and shakes have gluten.) I agree with everyone else about always carrying a snack with you, it really minimizes the risk of "cheating". Don't think of it as a diet, it is a complete lifestyle lifesaving change. I nearly died of this and these past few months of feeling good have been heaven! It is so worth it. There are a lot of good snack foods out there, my kids even prefer some of the things I eat over what is out there for them!

Good Luck