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Falling Off The Gluten-Free Wagon


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#1 kare101

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Posted 15 March 2010 - 07:39 AM

I've been gluten free for a week, and I already slipped. I love cold cereal with milk, and I miss it so much! Last night, I ate rice krispies. I'm pretty sure it's not gluten free, but I figured since it's made from rice, it wouldn't be as bad as some others. I have terrible insomnia right now, and late at night is the hardest time to stay on the diet. I don't know how I'm going to do this the rest of my life. It's especially hard because here in Saudi Arabia there's no gluten free food available, and I haven't ordered anything online yet. I'm so frustrated. Just starting to have a reaction to what I ate last night. It's been about 18 hrs, and I'm starting to have face flushing, hives, and what I think is kidney pain. I started getting it lately when I'm sick. It's so not worth it! Please help if you have any suggestions for kicking gluten for good...

Also, I've read a lot about people having problems with corn. Last night, I ate some popcorn with just salt at the movies, and I started coughing a lot. I always do, and I always thought it was just because of the husks in the popcorn, but now I'm wondering if I have a problem with corn. Any thoughts?
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#2 Jestgar

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Posted 15 March 2010 - 07:44 AM

I have terrible insomnia right now, .............. and I'm starting to have face flushing, hives, and what I think is kidney pain. I started getting it lately when I'm sick. It's so not worth it!

Eating gluten-free is a choice. If a bowl of cereal is worth feeling as you do, then how can any of us change your mind?
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"But then, in all honesty, if scientists don't play god, who will?"
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My sources are unreliable, but their information is fascinating.
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#3 kare101

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Posted 15 March 2010 - 07:51 AM

Eating gluten-free is a choice. If a bowl of cereal is worth feeling as you do, then how can any of us change your mind?



A bowl of cereal is not worth it, that's why I was asking for some words of wisdom and support. This is a very difficult transition. I'm having a very hard time, and I feel like crying after reading your reply. I was afraid of getting unsupportive answers like yours when I posted this, but I decided to think positively. If you didn't have something kind to say, why did you even reply? Keep your mean thoughts to yourself!
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#4 AlysounRI

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Posted 15 March 2010 - 08:00 AM

Hello Kare:

It sounds like you have having a hard time finding resources in Saudi.
I did a search for you and found these recipes:

http://www.recipezaa...s/saudi-arabian

It sounds like you will have to do most of your cooking and eating at home and then carrying food with you.
These recipes will have all of the ingredients available locally. But you will have to substitute the couscous in some of them to rice.

Many of the recipes on the above page are gluten free.
Also can you have someone who knows the area better investigate so perhaps you can get the supplies you need from Dubai or Qatar?

I even did a regular internet search on celiac disease + saudi arabia and came up with some medical papers for physicians who were at Saudi hospitals and universities. Their emails were also present. If you do that search you will find them and perhaps you can contact them and see if there are any resources in the country that they would know about.

As for corn, that can cause a problem too.
Best stick to unprocessed foods, maybe try some of the recipes on the website above and do your best.
I am almost certain that rice krispies have barley in them in the form of malt which is common to most cereals.

Just take care of yourself, don't beat yourself up and be healthy.
Your body will thank you.

~Allison
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Long history of IBS, and stomach/intestinal problems. Low on iron for all of my life.
Low on energy, with aches and pains in my joints and in my whole body for as long as I can remember.
Mostly lactose intolerant for all of my life (except for yoghurt)
Diagnosed in 2003 by naturapath as wheat intolerant. Tried it then fell of the wagon. In Feb. 2010 tried going gluten-free.
Went back to the poison in March, 2010.
Tested negative for celiac in April, 2010 (based on negative biopsy and normal tTG test). IgA tested 30-40 percent higher than normal.
Not going to fight the diagnosis because I refuse to go back to the poison. Happily gluten-free for health reasons as of April 2010, and not looking back.

#5 Jestgar

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Posted 15 March 2010 - 08:15 AM

A bowl of cereal is not worth it, that's why I was asking for some words of wisdom and support. This is a very difficult transition. I'm having a very hard time, and I feel like crying after reading your reply. I was afraid of getting unsupportive answers like yours when I posted this, but I decided to think positively. If you didn't have something kind to say, why did you even reply? Keep your mean thoughts to yourself!

I'm not being mean, I'm telling you that your life is under your control. You can choose to feel ill for a bowl of cereal, or you can choose to eat a handful of nuts and feel well. It's entirely up to you.
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"But then, in all honesty, if scientists don't play god, who will?"
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My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#6 Ahorsesoul

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Posted 15 March 2010 - 08:33 AM

This is a good lesson about falling off the wagon. It's not a problem, just get back on. Examine why you ate something that you were pretty sure was not gluten free. There are celiacs everywhere and gluten free food everywhere in the world. All unprocessed meats and veggies are gluten free.

You also may have to give up dairy (and sometimes soy) for a few months while your intestines heal. Think of it this way, every time you eat gluten you start the healing process over. The symptoms you are having because of the Rice Krispies are under your control. It's a good lesson, you suffer. When you are ready to not suffer and to take control of your life you will feel so much better. It's well worth the effort.

Yes, we all would like to give you a good shaking for eating those Rice Krispies. But only because we know how bad you suffer when eating gluten. We've all been right in the dust with you and had to haul ourselves back on the wagon. You can do this!!!

There are many companies in Europe that make gluten free yummy items (Schar and Bi-Aglut are two that I know). You can order online if you can't find products in your local stores.

Are you near King Abdul-Aziz University Hospital? They have done a study on Celiac Disease. You might find some resources there.

Keep us informed about how you are doing.
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#7 Shannonlass

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Posted 15 March 2010 - 08:48 AM

I've been gluten free for a week, and I already slipped. I love cold cereal with milk, and I miss it so much! Last night, I ate rice krispies. I'm pretty sure it's not gluten free, but I figured since it's made from rice, it wouldn't be as bad as some others. I have terrible insomnia right now, and late at night is the hardest time to stay on the diet. I don't know how I'm going to do this the rest of my life. It's especially hard because here in Saudi Arabia there's no gluten free food available, and I haven't ordered anything online yet. I'm so frustrated. Just starting to have a reaction to what I ate last night. It's been about 18 hrs, and I'm starting to have face flushing, hives, and what I think is kidney pain. I started getting it lately when I'm sick. It's so not worth it! Please help if you have any suggestions for kicking gluten for good...

Also, I've read a lot about people having problems with corn. Last night, I ate some popcorn with just salt at the movies, and I started coughing a lot. I always do, and I always thought it was just because of the husks in the popcorn, but now I'm wondering if I have a problem with corn. Any thoughts?


I feel your pain. I live next door to you (UAE)and am finding it tough too due to the lack of gluten-free food but even worse the labeling of the food is DIRE :angry: . I haven't deliberately eaten gluten yet but I have toyed with the idea, bad I know. Going gluten free is a MAJOR change of lifestyle. You can't be expected to get it right straight away. I have read so much since going gluten-free and lots of stories by people who knew they needed to be on a gluten-free diet but either didn't/couldn't/or tried half-heartedly! One week in I burst into tears because I wanted toast so badly. I was feeling withdrawals something awful. All you can go is get back in the saddle again. I am reliably informed that once we get the hang of the diet and get accidentally or purposefully glutened, our bodies will react in such a way that we will not want to do it again!! I think I had my first glutening at the weekend. I am not right yet. Lots of trips to the loo :(
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Digestive issues since childhood
Unexplained anemia since 1999
Eating-related nausea for over 4 years
Tested positive for H.pylori and was treated
Unexplained elevated liver enzymes since 2008
Condition deteriorated badly upon moving to Middle East July 2009
Severe diarrhea and vomiting
Positive antibody tests February 2010
Positive endoscopy March 2010
Gluten free since 21st February 2010

#8 Shannonlass

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Posted 15 March 2010 - 09:02 AM

I'm not being mean, I'm telling you that your life is under your control. You can choose to feel ill for a bowl of cereal, or you can choose to eat a handful of nuts and feel well. It's entirely up to you.


I felt your comment was very unsympathetic and derisive. Very surprising given that you are a moderator. It must be nice to have forgotten what it was like at the start of a gluten free diet.
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Digestive issues since childhood
Unexplained anemia since 1999
Eating-related nausea for over 4 years
Tested positive for H.pylori and was treated
Unexplained elevated liver enzymes since 2008
Condition deteriorated badly upon moving to Middle East July 2009
Severe diarrhea and vomiting
Positive antibody tests February 2010
Positive endoscopy March 2010
Gluten free since 21st February 2010

#9 Jestgar

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Posted 15 March 2010 - 09:10 AM

It really does get easier. Many people find that eating whole foods (meat, veggies, fruit) is the best option for them. Try to just avoid packaged food for a while, if you can, and maybe try one packaged food a week. You will find out which convenience foods work for you and which don't. Once you have your 'go-to' list shopping becomes much less stressful.

Sorry about the toast :( . If there are no good substitutes (and they are expensive and not so good for you anyway.....) maybe you can come up with something that will help the craving, like toasted sesame seeds, or maybe baked cheese or something.
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"But then, in all honesty, if scientists don't play god, who will?"
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My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#10 Jestgar

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Posted 15 March 2010 - 09:14 AM

I felt your comment was very unsympathetic and derisive. Very surprising given that you are a moderator. It must be nice to have forgotten what it was like at the start of a gluten free diet.

I have not forgotten. What I have learned is that people respond differently to different suggestions, and for some, stating the simple truth is what finally convinces them that their health is under their control.

You choose what to eat. Period. You can choose to be ill or not. Period.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#11 Gemini

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Posted 15 March 2010 - 10:10 AM

I have not forgotten. What I have learned is that people respond differently to different suggestions, and for some, stating the simple truth is what finally convinces them that their health is under their control.

You choose what to eat. Period. You can choose to be ill or not. Period.


I agree with you completely, Jestgar. I know this transition can be hard for those living in area's where gluten-free food may not be falling off the grocery shelves but people have a choice of whether or not they want to be sick. If they keep cheating, they are choosing to be sick. I see this in my family all the time and yes, I get the same reaction as you did when I tell them it's their choice to be well or not.

I am not trying to be rude to the original poster BUT if you are that easily offended, life is going to one long, difficult ride. It doesn't have to be.
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#12 luvs2eat

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Posted 15 March 2010 - 10:18 AM

I have not forgotten. What I have learned is that people respond differently to different suggestions, and for some, stating the simple truth is what finally convinces them that their health is under their control.

You choose what to eat. Period. You can choose to be ill or not. Period.


I kind of do forget what it was like to be just starting out. And I find myself losing patience w/ those who ask questions like, "Is this gluten-free?" and I want to say, "HALLOOOO... read the ingredients!!!" Or people who eat gluten KNOWING they're eating gluten and then are surprised that they get sick!

But I loved to cook before I was diagnosed. I was a label reader from way back so learning to cook gluten free hasn't been that difficult for me. For those who don't cook... I understand how completely daunting it can be!

I also remember being jumped all over when I mentioned very early in my gluten-free adventure years ago that I wasn't so sensitive that I couldn't pick croutons off of salads and blow off any crumbs. People blasted me telling me that I was NOT gluten free if I thought I could do that! They were right, of course... but I was so angry over the responses that I deleted celiac.com from my faves list and vowed never to return! A week later, I came back and thanked the people who blasted me... they were right and I was completely wrong.

So... I try hard to remember how it was starting out and not to be so short w/ my observations so as not to make people already feeling crappy feel even crappier.
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#13 Jestgar

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Posted 15 March 2010 - 10:43 AM

I also remember being jumped all over when I mentioned very early in my gluten-free adventure years ago that I wasn't so sensitive that I couldn't pick croutons off of salads and blow off any crumbs.

I think this is hard for a number of reasons, all of them having to do with this being a screen of typing and not face to face contact. It's difficult to know if someone is meaning to be harsh, or just trying to be firm.

I think it's also hard to accept that we have to take responsibility for ourselves, and someone telling you this may just make you angry, until you are ready for it.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#14 tarnalberry

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Posted 15 March 2010 - 12:25 PM

I felt your comment was very unsympathetic and derisive. Very surprising given that you are a moderator. It must be nice to have forgotten what it was like at the start of a gluten free diet.


Most of us do remember. Most of us still have some wishful fantasy that we could "eat normally" without having any problems.

But jestgar's advice was similar to what I would write: Know that these choices are in your control. There's no secret to not succumbing to a desire for food. There's no special method for making sure you don't fall to a craving. It's a choice each and every time we make food more accessible - from buying that box of cereal, to opening it, to pouring it in the bowl, to picking it up with a spoon. Four times to look at your choices and decide if that's really what you want to do.

Again, this isn't mean "you should have known better", this is "all of this is your choice". A number of us phrase it that way because some people - especially those going through the struggle of transitioning to gluten free - say things like "fall off the wagon" and "couldn't help myself". That implies that you're a passive party to your food consumption. And, you know, a lot of cultures don't encourage people to be present and active in eating, aware of what they're eating, when they're eating, why they're eating, and how they're eating. But that's habit, and all of those things, whether we've been trained out of it or not, are our choices.

There's a zen-like "be present in each moment" aspect to going gluten free - you need to be active in the moment, not in the past (but I've always ate this for comfort) or future (scared of every last bit of food for fear of reaction - the other end of the spectrum ;) ). For some, it's a practice that takes longer to develop than others, but we all have to do it. I wish everyone (regardless of dietary issues) would do it; we'd be healthier!

It really does boil down to "it was your choice to do something you knew would make you sick. if you don't want to be sick, choose not to", but that doesn't mean that it's that simple to get to in real life. only you can figure out how YOU can get there, though.

OK, and potential for flaming me, I'll grant, but here's the truth from my perspective:
It may also be helpful to know, in general, after a number of years on the diet, a lot of us see the "ugh, I chose to eat gluten and now I feel awful. support!" as similar to "ugh, I chose to see what it feels like to put a nail gun to my foot and press the trigger! support!" The latter just doesn't make sense. Not because we think the diet is easy, but because we've made that choice - pick up the nail gun or not - so often that we can more easily see it as a choice, even if we sympathize with your desire (ok, maybe not so much on the nail gun case... except the closet masochists :P). We only want to help you realize the truth of that sooner, since we don't tend to think of food as a nail gun. :) It becomes all the more important to understand the truth of "this is a choice" when you go to your parents 50th wedding anniversary and everyone is pressuring you to eat the fabulous cake that honors your parents, or whatever intense social event tries to convince you to make something other than what you know to be the correct choice.

At the end of the day, the only thing you can do is move on to the next day: forgive yourself - completely - for that choice, and be aware of your choices in the future, making the ones you want. You'll get there; it takes time, but you will get there if you try to, mistakes along the way and all.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#15 kayo

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Posted 15 March 2010 - 12:40 PM

When starting out that tough love kind of response can be hard to swallow!

Instead of dwelling on what went wrong why not take this moment and do something positive - order items from the gluten free mall.

They even have a rice crispy like cereal:
http://www.glutenfre...eal-p-1571.html

Amazon is also a great resource.

Also, do you have a market where you shop regularly? Talk to the owner, maybe they have resources as well.

Yes, it can be expensive to order these things but if you fill your diet with natural items that you can get locally then the cost won't be so bad. Fill up on fruits, veggies, meats, dairy, rice, quinoa.... whatever you can tolerate as I'm not sure what your other food intolerances are, if any.

Hang in there!
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40 year old former foodie on a quest to feel better!

-IgE to oats and rye
-Diagnosed with Colitis via endoscopy/colonoscopy Oct '10
-Following FODMAP diet since June '10, Positve SIBO test, July '10
-Diagnosed non-celiac gluten intolerant June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)
-Osteopenia June '10
-Gluten free since July '09 & Soy free since December '09
-Dairy free since '06
-IBS & Sjogren's diagnosed '05
-RA diagnosed as a toddler



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