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Chiron

gluten-free Roller Coaster

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I have been gluten free for 3 weeks now and my day to day health has felt like a roller coaster. About 1 week after going gluten free I had what feel like two miracle days. I felt better than I have ever felt in my life (celiac symptoms went undiagnosed for 12 years, now biopsy confirmed celiac). I had incredible energy and my joint pain and GI symptoms vanished. Then I found myself bed ridden with body pains and bad D once again after eating out for the first time (even though everything came from the gluten-free menu at Outback Steakhouse). After a couple of days I felt somewhat better, then tanked again. Thas has continued. For example just yesterday I barely crawled out of bed. My joints were so inflamed I had trouble walking around my apartment. Today I am bubbling with energy (though still bad D) and haven't needed even any OTC pain killers, even though it is pouring down rain here- which usually gives my joints lots of grief.

Is this normal? I am being very strict about what I am eating and haven't eaten outside my own gluten-free kitchen again, but know there is a huge learning curve with this. I just found out that the breakfast cereal I started eating was wheat free but not gluten free. Is this roller coaster coming from other sources of hidden gluten? I have also gone dairy free for two weeks, and am eating mostly whole foods (fruits, veggies, lean chicken, rice, beans, peanut butter, soy cheeses, rice milk, rice pasta) and few of Amy's Brand frozen meals that are DF/gluten-free. I am so scared I am going to eat the wrong thing I won't buy anything that isn't specifiically labeled Gluten Free until I figure this out. The nutritionist who helped diagnose the Celiacs hasn't found any obvious gluten or dairy sources in my Food Log.

Since I have had a handful of days where I have felt better than ever I am optimistic, but the ensuing bad days have been harder to handle now that I know what it feels like to feel good.

What can I do to help the good days outnumber the bad?

Chiron


Biopsy Confirmed Celiac: January 10, 2008.

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It may take some time before you really feel the effects of the gluten free diet. You have to remember, that it took time for the damage of occur and likewise, it will take some time for the healing.

The gluten free diet is very complex in the beginning as you are finding out. The learning curve is very steep.

Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten.

Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products.

Patience and diligence will help you along your way. Good luck.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Momma Goose summed it up well, it just takes time.

I'm lucky I don't have trouble with Amy's but many do. I will not go to Outback anymore though yet many on the forum don't have trouble with them. Be careful of the rice milk, it's not all gluten-free. You have to read the fine print on everything and get to know the chemicals and even then -- dont always trust what you read.

When I had a lot of joint pain my friends in Japan said to eat gobo or burdok root. I shave it up in salads now and it's helped a lot.

Good luck

Ken

I have been gluten free for 3 weeks now and my day to day health has felt like a roller coaster. About 1 week after going gluten free I had what feel like two miracle days. I felt better than I have ever felt in my life (celiac symptoms went undiagnosed for 12 years, now biopsy confirmed celiac). I had incredible energy and my joint pain and GI symptoms vanished. Then I found myself bed ridden with body pains and bad D once again after eating out for the first time (even though everything came from the gluten-free menu at Outback Steakhouse). After a couple of days I felt somewhat better, then tanked again. Thas has continued. For example just yesterday I barely crawled out of bed. My joints were so inflamed I had trouble walking around my apartment. Today I am bubbling with energy (though still bad D) and haven't needed even any OTC pain killers, even though it is pouring down rain here- which usually gives my joints lots of grief.

Is this normal? I am being very strict about what I am eating and haven't eaten outside my own gluten-free kitchen again, but know there is a huge learning curve with this. I just found out that the breakfast cereal I started eating was wheat free but not gluten free. Is this roller coaster coming from other sources of hidden gluten? I have also gone dairy free for two weeks, and am eating mostly whole foods (fruits, veggies, lean chicken, rice, beans, peanut butter, soy cheeses, rice milk, rice pasta) and few of Amy's Brand frozen meals that are DF/gluten-free. I am so scared I am going to eat the wrong thing I won't buy anything that isn't specifiically labeled Gluten Free until I figure this out. The nutritionist who helped diagnose the Celiacs hasn't found any obvious gluten or dairy sources in my Food Log.

Since I have had a handful of days where I have felt better than ever I am optimistic, but the ensuing bad days have been harder to handle now that I know what it feels like to feel good.

What can I do to help the good days outnumber the bad?

Chiron


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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"Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten.

Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products."

------

I did indeed do a major kitchen overall (thank to advice on this site). I have all new cutting boards, colanders, toaster oven, serving spoons, pots and pans etc. I live alone so there is no risk of cross contamination.

I haven't checked my toiletries b/c I don't have the skin symptoms. Is this still a risk?

I actually work in a commercial kitchen that is not Gluten Free (attached to a gluten filled bakery). My employer has been great about letting me focus on naturally gluten free dishes, but we strain pasta in the same colander in which we clean veggies. I do taste the dishes I make (less than 1 oz sample)-Is this enough to make me sick? I haven't taste tested any obvious gluten dishes but cross contamination is guaranteed. Yikes!


Biopsy Confirmed Celiac: January 10, 2008.

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Be careful of the rice milk, it's not all gluten-free. You have to read the fine print on everything and get to know the chemicals and even then -- dont always trust what you read.

Ignorance is not bliss. The rice milk I have been drinking says "Gluten Free" on the label. Rice Dream, Enriched, Organic. I searched past posts on the site which say that this brand contains gluten. Has the product been reformulated- or can they falsley claim gluten free? Evidently past labels admitted to trace amounts, this one claims "Gluten Free." I will forego this brand just to be sure, but am curious for future reference as I try to navigate the gluten-free path.


Biopsy Confirmed Celiac: January 10, 2008.

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The kitchen has got to be a problem. I taught 3 or 4 times a week at the culinary school here in Kona but had to cut down to 1 day a week and some lectures. I can't go into the kitchen for 2 days after a bread class. There is just too much flour in the air. You have to be really careful of the CC from the bakery, not just the crumbs but where the batters are mixed.

good luck!

Ken

"Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten.

Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products."

------

I did indeed do a major kitchen overall (thank to advice on this site). I have all new cutting boards, colanders, toaster oven, serving spoons, pots and pans etc. I live alone so there is no risk of cross contamination.

I haven't checked my toiletries b/c I don't have the skin symptoms. Is this still a risk?

I actually work in a commercial kitchen that is not Gluten Free (attached to a gluten filled bakery). My employer has been great about letting me focus on naturally gluten free dishes, but we strain pasta in the same colander in which we clean veggies. I do taste the dishes I make (less than 1 oz sample)-Is this enough to make me sick? I haven't taste tested any obvious gluten dishes but cross contamination is guaranteed. Yikes!


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Funny you mention Outback.

We went there last night with some friends. I am allergic/moderately tolerant of Gluten so keep that in mind. I asked the waitress for the gluten-free menu and next to each steak it listed "stay away from the au ju". I asked the waitress if the au ju had gluten in it. She said no but wasn't sure why it was listed. She went and got the manager and the manager told me there is no gluten but they prepare it at th restaurant themselves and cannot say its gluten free because of CC.

Something to keep in mind. I'm not that intolerant, if I go 2-3 days without gluten I have have a sandwich so the minor stuff is totally transparent to me. I don't eat anything with gluten at all but for those who are extremely intolerant ask a bit more of what they consider gluten free at a restaurant. If there was CC in the au ju I'd personally never know but others may.

If its an education issue I wonder how may waiters/waitresses would say "No there is no gluten in the au ju", although the correct answer they cannot say it won't be contaminated.

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