rmmadden

Michelle,

I too was glutened on my vacation (To Seattle) and it's no fun. I think as your body is purging itself of gluten you become more sensitive and thus the attacks last longer (at least they do for me, anyways).

I also checked with the kitchen before eating something that was supposed to be gluten-free but, alas I got sick. I was sick for 9-days after getting glutened this time. It's a bit depressing that you could ask all the questions and try and be diligent and yet still get sick. Hang in there & best of luck!

Cleveland Bob

You could try Peppermint or Spearmint Tea, gum or mints to sooth your stomach. If the naseau gets really bad then I turn to Pepto Bismol for relief.....

Best of Luck!

Cleveland Bob

Rin,

Welcome to the forum. This is a great place to ask questions and just plain get things off your chest because we all know how frustrating this life can be.

As for the question of being tested or not.........Even if you get tested you are still going be grasping at straws because not many doctors know all that much about celiac disease. Most of us are learning to deal with our celiac disease by figuring it the hard way......Whatever makes you feel good stick with it and whatever hurts you delete from your diet. Each person is different in what they can tolerate and how their system reacts so that pretty much is all one can do.

I know this doesn't sound so scientific but the one thing I have leared from all this is that medicine isn't an exact science. If you feel better folllowing a gluten-free diet then stick with it. Try keeping a food journal writing down everything you eat and how it makes you feel. This will help you identify what to eat and what to stay away from.

Best of Luck!

Cleveland Bob

Last time I ate at McDonalds all I had was the fries and I got sick. I know they say they use dedicated fryers but you wonder what some 16-year old who's working the night shift does when they must make a fish sandwich and the other fryers are shut down already. Too easy for cross-contamination so I'm staying away from now on.

Best of luck!

Cleveland Bob

A general FYI -- I was vacationing near the Lake Erie Islands last weekend and came across a hard cider alcoholic beverage called "K". I went on their website (www.Kcider.com) and in their Q&A section they answer the gluten question...it has none. I have a 4-pack chillin' in the fridge and now that I have firm info against any gluten I plan on trying it this weekend........stay tuned and I'll post my thoughts on taste, etc.

Cleveland Bob

To quote a famous line from an old movie...."Judi, Judi, Judi...."

First off welcome to the board. This is really a great place for getting info and in general just keeping your sanity by talking to other celiac disease people.

To answer your questions (as best as I can) I definitely think a correlation exists on how you feel on a day-to-day basis and the damage you have sustained. Especially after you have gone gluten-free. I think there is a "Gluten Withdrawal" one goes thru and I think one developes an increased sensitivity to gluten once your system starts living without it. Personally I went thru the withdrawal which lasted about 2-3 months and now I am very sensitive to Gluten.

The labeling issue with gluten-free foods is more of an issue of your system versus labeling I think. What one person can tolerate another might not. A lot of celiac disease people have multiple allergies so it's hard to nail-down specifics. I have heard stories where products have changed that were once gluten-free but no-longer are. Best advice is to always read and keep a food diary to see what you are reacting to.

Finally, on the beer front......Try Bard's Tail Beer. It's gluten-free as it is based on sorghum and it's not bad. Taste's like a micro-brew in that it is 'Hoppy".

Hope you feel better & Best of Luck!

Cleveland Bob

Unfortunately I avoid eating Ice Cream out pretty much altogether. I went around my local places at the beginning of the summer and asked all the questions, etc. and had them wash the scoops and yet I still ended up getting glutened

Now If my family goes out I pretty much abstain unless it's DQ and then I get the vanilla soft-serve in a cup. I look at it this way......I could always go home to some Ben & Jerry's if I really crave Ice cream.

Oh well,

Cleveland Bob

Since I came down with celiac disease I have to eat small meals every 3-4 hours. I agree with the theory about malabsorption causing the need to eat more frequently. I have noticed that as I slowly heal I am able to go longer periods of time between meals. Hopefully I can get back to a regular schedule eventually.

Best of Luck!

Cleveland Bob

Personally I miss a pint of well-drawn Guinness! Also, a real cheesy deep-dish pizza from Giaradano's (sp?) in Chicago. A gluten-free brownie or an apple just can't substitute or replace some things.......Oh Well.

Cleveland Bob

I just returned from Seattle and enjoyed Starbucks quite a lot on my trip (even went to the original Starbucks at Pike's Market). Anyways, I emailed them about their Tazo Chai Tea Latte (which is awesome!) and they replied that it's fine. The Ginger Chai Tea and the 2 previously mentioned frapps contain gluten. Otherwise enjoy!

Cleveland Bob

I repeat what the others have said......It varies from person-to-person depending upon what amount of damage you have and how well you stay away from Gluten. I have been gluten-free for 8-months but I didn't really see any improvement until after the 5th month. I'm still not without accidents or days where I feel lousy but I guess that's just par for the course when you have celiac disease.

All you can do is try your best and let time heal you. Best of luck!

Cleveland Bob

I too have noticed an increased sensitivity after going gluten-free. Each time I accidentally get glutened I think the reaction is worse and the symptoms last longer. I do feel better versus when I started the diet but It's a long, slow road to recovery.

Best of luck to you!

Cleveland Bob

Forgettabout the "Yinkees" and paaark a caaaar on the Dead Sox as well. There are sports teams outside of the East coast or big cities for that matter. My allegiance is with the Tribe and always will be.

Cleveland Bob

I like LARABARS (not a great amount of protein but they taste good) and something new I found while on vacation in Seattle........Bumble Bars. They are made with sesame seeds/flax seeds/nuts and say Gluten Free right on the package.

Cleveland Bob

1/2 Irish & 1/2 Italian here (What a temper combination, huh?). I can drink you under the table and then throw it at you when I'm done........lol

Cleveland Bob

It's a long, slow process to heal your intestine's. I didn't start to feel better until after 5-months and I still have bad days after being gluten-free for 8-months. I hear that depending upon how much damage one has it could take up to 2-years to heal.

Some theories talk about Gluten withdrawal after going gluten-free. You might have that or other allergies....who knows? Try not to judge too much on the day-to-day prognosis at this point as it's really hard to see much improvement. Look at it from a bigger picture and you will be able to look back and see how you have improved.

Hang In There & Best Of Luck!

Cleveland Bob

Mel,

I don't cramps but there are something like 200+ symptoms so I guess it's different for everyone. The one thing I can say to a "Newbie" is to try and not judge your day-to-day feeling/health too much. I had someone tell me when I was first starting out that it's better to judge a period of time (like a quarter) versus daily. You will look back and see the improvement where as daily can be very hard to spot much improvement.

Hang in There & Best of Luck!

Cleveland Bob

I am curious to know if anyone else gets knots in their shoulders, neck and/or back from a gluten episode?

When I am gluten-free I don't have any of these symptoms/problems but boy do I get tight in the shoulders when I am suffering thru a gluten attack. I can feel the knots and it just adds to the misery on top of the lousy gluten feeling.

Can anyone relate?

Thanks!

Cleveland Bob

Michelle,

First off I wanted to say that you are one of my favorite "Posters" on this board. You really choose interesting topics and it seems you also do your homework.....Thanks!

After reading this post I wondered how many celiac disease people have also been tested for other allergies? I did the at-home York test but they lost my sample and I've yet to be retested. I need to get that done so I know what else to avoid (I do keep a food journal but as Jen said it's hard to know what exactly is going on). So, I just keep plugging away and hope that tomorrow is a better day.

Thanks Again & Best Of Luck To All!

Cleveland Bob

This board was made for ranting! I for one am thankful to have found this board because it provides the opportunity to get things off your chest and speak to others who know how you feel. I look at this forum as therapy and I can't begin to imagine how I would deal with this disease if it wasn't for the internet and this board.

Rant away all you want.......And I hope you get good news and feel better!

Cleveland Bob

For the first 7-months of being gluten-free I pretty much stayed at the same weight no matter what or how much I ate. Now in my 8th month I have finally gained a few pounds back (which I hope is a sign that my intestine's are healing?).

I think it's different for everyone. I guess the main thing is if you are feeling better than that's good.

Best Of Luck!

Cleveland Bob

Greg,

I completely understand your frustration. I went nearly 37-years of eating whatever I wanted before all-of-a-sudden I got sick last August and was diagnosed with celiac disease. I had no prior symptoms and it was a shock to change my lifestyle that fast.

The best advice I can offer is to read, read & read. Go to your local library and get a few books out on Celiac (including cookbooks). Then take a trip to your local grocery store & health food store. You will see that there are plenty of things you can eat that are gluten-free (Cozy Shack Rice Pudding is awesome) and ultimately better for you.

It does seem very overwhelming at first but soon it will be second nature and you'll do fine.

Best Of Luck!

Cleveland Bob

Not for me! The few times that I've slipped-up and felt so awful are enough to answer the question. The pain and suffering far out-weigh any possible enjoyment from a donut, etc.

Cleveland Bob

I prefer Almond Milk and/or Hazelnut Milk myself. Pacific makes both and they say Gluten Free right on the package.

Best of Luck!

Cleveland Bob

Holly,

I am a very nervous patient who hates needles and I had the Endoscopy. It's not as bad as it sounds. You will be sedated and hopefully not remember anything. The procedure doesn't take too long and the side effects are minimal (sore throat for a day and some gas pains).

Trust me If I could live thru it anybody can.

Best Of Luck!

Cleveland Bob