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1965kid

How Much Is Too Much?

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Im about two weeks into this diet after being diagnosed with Celiac.

Im doing pretty good. Feeling better mentally. My IBS is still quite bad, or not any better I should say.

I am wondering how much I should worry about CC. I stopped and bought some Pistachios on the way to work this morning. The ingredients are: Pistachios, salt.

But it says (packed in a facility on shared equipment that may contain peanuts, tree nuts, soy, WHEAT, seaweed, milk and eggs.

Im getting sick of all this worring about CC all the time. Surely these are safe to eat?

I cant find any cornmeal the isnt labeled the same way (packed in a facility that processes wheat)

I read somewhere that the smallet amount of Gluten proven to cause damage to the intestines was equal to 1/48th the size of a slice of bread. Now Im no rocket scientist, but I know a speck of flour here and there is way smaller that 1/48th a slice of bread. That is a pretty big crumb.

I know some people are more sensitive than others.

How many of you dont sweat the small stuff as it were?

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Honestly, I was skeptical about these things at first as well.

But now, my son Lucas has been glutened too many times where CC was the only possible explanation.

Example: there's been 3 times now where Lucas has been glutened, and each of those particular times-- we had not eaten out, he hadn't eaten over at anyone else's house, and he'd eaten all certified gluten-free foods or foods that I personally made in my nearly gluten-free kitchen, EXCEPT.... Lay's chips.

For those 3 incidents, the ONLY suspect food he'd eaten were Lay's chips, which are in danger of CC at the factory. It's taken me three times to accept this, because I really had a hard time believing that something like that could really affect him.

Apparently, it does-- or at the very least, it can sometimes. Maybe it depends on the batch. I don't know. I still have a hard time accepting this, but there's no other explanation.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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It sure sounds like it had to be the Lay's chips.

I wonder if some people are more sensitive to CC than others?

I also wonder how I will know if I get glutened, besides for my IBS coming back, which hasnt left me yet. I hope it goes away soon.

I never really got bad sick from Gluten. I just had severe IBS, irritability, bloating, Anxiety, depression, body aches, and fatigue. But I never was "bad sick". At least not what I would call bad sick.

I saw a story on TV about Celiac, and decided I should get checked. My results came back positive for Celiac.

The thought of not being able to travel, not eating out, not eating at a friends, not to mention trying to date again, (Im widowed), is just about too much. I could handle this if it wasnt for the CC issue, which I cant seem to figure out because there is no solid proff of how much is too much.

I almost think I would rather have the IBS, and live and eat normal.

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It is hard to imagine, I know. I can tell you though, we have no stopped eating out. We just eat out a lot less. Of course, if you are used to eating out every other day, then cutting that back to once every other week may indeed seem as bad as not eating out at all.

The way I look at it is-- the more often we eat out, the higher chance of getting glutened. It's a percentages thing. So I just try to minimize that by not eating out very often. Sometimes Lucas will ask if we can stop at McDonalds, and I'll base my decision on how long it's been since the last time he was glutened. Sigh...

For eating at other people's houses, well, we didn't do that more than a few times a month anyways. Generally, it's either at one of our parents' houses, or at our best friends' house (this is a couple.) And my parents' house is highly gluten-free anyways, because my mom is Celiac. So we've only had two households to educate, and they've been very accomodating and helpful. We've still gotten glutened a couple times at other people's houses, though.

So yeah, I know, it's not easy.

Do the best you can! Try to stay away from CC risks as much as possible. It may be that CC is why your IBS symptoms haven't gone away yet. :(


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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I wonder if some people are more sensitive to CC than others?

I never really got bad sick from Gluten. I just had severe IBS, irritability, bloating, Anxiety, depression, body aches, and fatigue. But I never was "bad sick". At least not what I would call bad sick.

I almost think I would rather have the IBS, and live and eat normal.

A lot of people feel this way for a time. The fact is, 'IBS' is not your only concern. People with untreated celiac are something like 40 times more likely to develop intestinal cancer. I think to myself how I would feel twenty years down the road (in my forties) when I got cancer and had to explain to my family, well, it just wasn't worth eating different food, sorry.

Yes, some people are more sensitive to CC than others. Most people also become more sensitive as time goes by. And honestly, your description of what your body was doing sounds like pretty 'bad sick' to me.


If you're going through hell, keep going. ~Winston Churchill

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Maybe Im just in denial.

I know that doing this all alone is not fun. Everyone thinks Im "making too much out of this". My Doctor is no help. I think I know more about Celiac than he does.

What worries me the most, Is everything! :lol:

No really, I am feeling scared to ever go on Vacation again. How will I eat?

Should I just "do my best" when I go on vacation, and not stress over some CC if I get it?

Its not fair to my daughter to just stay home all the time. She likes to eat out. Do I take her and sit there and watch her eat.

I know Im going to get sick of Tostadas at Taco Bell and Chili at Wendy's. Ha! Actually Im already tired of it.

Must remember, Heinze, not Hunts ketchup. So much too remember. No ketchup when eating out, because I know they refill the bottles, and they use cheaper ketchup. But wait, what would I put ketchup on? All the fries are cooked in CC oils. MCD's fries arent safe, its on their website.

Who can I trust to cook for me.

It was very upsetting telling my Mother I cant trust her cooking, no matter what she uses, because even I am not sure what I can use or eat.

Some Soy sauce is OK, some not.

Some candy bars, some not.

Corn meal to fry fish in, no its CC'd

Peanuts are safe right?, no chance of CC!

Argg!

Im rambling. I know.

There really isnt an easy or fun way to live this Gluten free life is there?

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Speakinig only from my own personal expirience.....

I recently moved and just this week found another box with kitchen things in it and amoung the items was my rolling pin.... which I proceeded to use to roll out my pizza crust 2 nights ago..... I got CC and it could only have come from my rolling pin, so I will replace it.......

as for the chips I did an expiriment once and I dont think it was so much the chips as the oil, it seems I get simular syptoms if I have to high of an oil intake and the regular chips are cooked in oil they bother me not to the same extent as a CC but simular enough I only eat the tiny bags and make sure I have a few days in between before having another.


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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ME, I have fun... I am headed out to cracker barrel for a late lunch. I ate lunch at Pei Wei yesterday. Here in Houston my local carrabba's has a laminated gltuen free menu in the restaurant, they gave me one for my office, There is Taco cabana you can have their roasted chicken, beans & rice...

I was bad yesterday & took some see's candy to the movies - i am really not supposed to eat the chocolate & dairy - but every once in awhile I cheat. then I had the popcorn & a bottle of water... movie was good. going to see the bee movie today.

have you contacted your local support group? there is also a site for single celiac's, you should register there. I am also not married but I am 61, pretty much doomed to being single now. although there is a guy I know that wants to date me, but I had to tell him that I really did not think that it would work, & I would rather stay friends, & you will never guess the reason, his hobby of all things is making pizza's from scratch. He buys all these special wheat flours etc etc etc...

vacations are easy - there is gluten-free food everywhere. Go to South lake Tahoe & eat at freshies, which is a fish & chips place totally gltuen free, The Red Hut for breakfast will make you an omelet & you can get fresh fruit & the grocery there has a huge selection of California fresh fruits & veggies, the chefs at the casinos will prepare anything for you, go to The Chart House for dinner, they have a salad bar with everything including caviar and are very reasonably priced, there is their shrimp cocktail, grilled seafood or steaks & a lot of veggie sides... Drive over to Genoa & eat at the 5 star restaurant LaFerme almost everything is gluten-free naturally but do not have the sauces. For dessert you can cheat & have the homemade ice cream but be sure to tell them not to put the cookie on it. Then there is the P F Changs in Reno & other restaurants.

Go to Disney Land & feel sorry for yourself while you can eat all the gluten-free food there. They are VERY accomodating for all food allergies... Or darn, plan a dreary cruise trip & let the chef prepare all your meals to order !!!!!!!

it is a process & you are certainly allowed your panic time, but if you just take it one day at a time.

Also you chould get a small cooler for the car & a lunch kit already packed with a paring knife , utensils, baggies, some cups & a salt & pepper shaker. I also keep those frozen things in the freezer to grab & go if I am packing food from the refrig. If you stop at a grocery & pick up some deli meat, fruit etc you will be ready to go. No reason that should not be fun...

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I understand where you are coming from. We used to go out once a week, and for two years I was too afraid to eat out at all. But that is not because of gluten, but because I am intolerant to a million other things.

If it was only gluten and dairy I had to avoid, I would be soooo happy! But I can't eat any fruit other than peeled pears, no eggs, legumes (including peanuts and soy), nightshade vegetables (potatoes, tomatoes, peppers, eggplant), no grains of any kind (including the gluten ones, of course), including rice and corn. And I don't tolerate starches well in general. I react to tapioca and arrowroot, too.

The only things that are sort of safe to bake with are light buckwheat flour (I react to dark), ground hazelnuts and ground almonds (both those ground nuts cost a fortune).

I can't have any spices or herbs, no tea other than chamomile tea, no coffee. The only safe oil is cold pressed sunflower oil, the only seasoning sea salt, the only sweetener maple syrup.

Why am I telling you all this? Just to put things into perspective for you. Believe me, it could be MUCH worse than 'just' having to avoid gluten! And you know what? Even though I sometimes resent my limited diet, it is doable, and for the most part, I manage to stick with it. And if I cheat on any of those (like fruit), I know I end up taking heavy duty painkillers, but sometimes it is worth it.

But the glutened symptoms aren't worth it. Especially knowing that if I don't stay away from gluten I am guaranteed to die of intestinal cancer 20 years ahead of my time. My mother did, and so did my grandmother. Because they had undiagnosed celiac disease, their doctors never figured it out (especially my mother's doctor was a quack, but she wouldn't listen, and wouldn't change doctors). I didn't meet my grandmother (who died of stomach cancer), but my mother had all the same symptoms I had.

Your daughter needs you, you owe it to her to get well!

I don't think you should eat anything that is made on shared equipment. Because that means that the pistachios went over the very same assembly line as wheat. Unless they scrubbed it by hand, cleaning every nook and cranny (which of course they don't), the risk of cc is too high.

You CAN go out safely. If you go to a nice restaurant, the best way to do it is, to call ahead of time and ask to talk to a manager. Explain your needs to him/her, and ask if they can accommodate you.

I've had a manager supervise the cook while cooking my meal in a corner dedicated just to cook my food. He had them scrub the pot and pan, made the cook wash his hands and put new gloves on, even had them rewash my cutlery and plate (all that was before I found out my other intolerances). It cost a little more (no buffet for me), but I didn't get glutened.

Of course, in restaurants you can't worry about things like cooking utensils, pots and pans that have been previously used on food with gluten, and so you take a small risk. That is why you shouldn't eat out too often.

I've also gone out with others before, and took my own food with me. If others order food, and maybe you just order a plain salad (bring your own dressing) and a drink, they don't say anything. Especially in fast food places that is a good idea.

Have you eliminated dairy yet? Seriously, you NEED to do that for at least a few months in order to get better! I suspect the continuing IBS (which really isn't IBS at all, but celiac disease symptoms) is caused by dairy (plus possibly soy if you eat any).

It is easy to know which soy sauce is gluten-free. In regular soy sauce, the first ingredient is wheat. In gluten-free soy sauce, there isn't any. Just ask your family to read labels! Of course your mother can still cook for you. If you have explained things to her, and you think she truly understands, then why wouldn't you eat her food?

If she cooks for you and you get glutened, let her know. If you find she won't listen, and isn't willing to go the extra mile, then you would be right in not eating her food any more. But you need to give her a chance!

Buy your mother a gluten-free cookbook. One by Bette Hagman is a good choice (I own 'The Gluten-Free Gourmet' myself). Buy yourself one, too. Maybe your mother and you can learn to cook delicious gluten-free food together (and don't forget to let your little girl help, too).

The 1/48th of a slice of bread is garbage! That is what they found will cause obvious villi damage. But before that happens, you would be quite ill. I guess they dismissed all other symptoms like brain fog, muscle and joint pain, headaches etc., and focused only on villi damage. What nonsense!

It has been proven that a lot less than that will cause people to be quite ill. Seriously, you need to dismiss studies like that, done by so-called scientists who completely focus on villi damage when looking at celiac disease. Very narrow-minded as far as I am concerned.

But at the same time, I do take some chances. Mind you, that is now, two years after figuring out I am gluten intolerant, probably celiac disease (self diagnosed, but the terrible, immediate reactions I used to get from accidental glutening convinced my doctors that I have celiac disease). As I said, for the first while I was very careful.

I will go to McDonalds (here in Canada) and eat their grilled chicken Caesar salad (no croutons, of course) without a problem. That is the only fast food I dare have, though. But it is nice enough.

I will go to Swiss Chalet to eat at times, and haven't been glutened. They have a few foods that appear to be safe.

As I said before, try not to be too paranoid! But at the same time, read labels and don't take any unnecessary chances. There is a fine balance that I am sure you will find in time.

Two weeks is a short time to be on the gluten-free diet. You say that mentally you are much better, but your bowels haven't settled yet. It does take time, for some a lot longer than two weeks. Be patient!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Before worrying about eating out, vacations and such, give yourself time to learn the ins and outs of the diet. That way you'll be much better able to explain to whoever is cooking your food how it needs to be done.

You're probably in denial, too. :) It's a natural part of the process of accepting a major life change.

Remember the diet is for the rest of your life but it will get easier. After a while you will learn how to deal with different situations. It's just the first year when you come across every holiday and family occasion and so on for the first time that is the hardest. The second time around you'll have a much better idea of how to deal.

Pauliina

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Maybe Im just in denial.

I know that doing this all alone is not fun. Everyone thinks Im "making too much out of this". My Doctor is no help. I think I know more about Celiac than he does.

What worries me the most, Is everything! :lol:

No really, I am feeling scared to ever go on Vacation again. How will I eat?

Should I just "do my best" when I go on vacation, and not stress over some CC if I get it?

Its not fair to my daughter to just stay home all the time. She likes to eat out. Do I take her and sit there and watch her eat.

I know Im going to get sick of Tostadas at Taco Bell and Chili at Wendy's. Ha! Actually Im already tired of it.

Must remember, Heinze, not Hunts ketchup. So much too remember. No ketchup when eating out, because I know they refill the bottles, and they use cheaper ketchup. But wait, what would I put ketchup on? All the fries are cooked in CC oils. MCD's fries arent safe, its on their website.

Who can I trust to cook for me.

It was very upsetting telling my Mother I cant trust her cooking, no matter what she uses, because even I am not sure what I can use or eat.

Some Soy sauce is OK, some not.

Some candy bars, some not.

Corn meal to fry fish in, no its CC'd

Peanuts are safe right?, no chance of CC!

Argg!

Im rambling. I know.

There really isnt an easy or fun way to live this Gluten free life is there?

Regarding corn meal, I use Arrowhead Mills Organic, which I found in a "regular" grocery store. It says "Wheat Free Gluten Free" on the front and I've not had problems with it. I use it to fry fish, for cornbread and to keep homemade pizza crust from sticking.

It is a HUGE learning curve. At the beginning it is overwhelming and I know I worried about business lunches and travel more than anything. I know several people who travel all over the world and are ok. I have been ok eating at business lunches and have not embarassed myself or my boss. It gets easier all the time.

I second the idea of a support group for you. You might even meet an attractive, single gluten-free woman there! (just an idea...)

Good luck!

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Speakinig only from my own personal expirience.....

as for the chips I did an expiriment once and I dont think it was so much the chips as the oil, it seems I get simular syptoms if I have to high of an oil intake and the regular chips are cooked in oil they bother me not to the same extent as a CC but simular enough I only eat the tiny bags and make sure I have a few days in between before having another.

This is what I figured out, it was the oil not the chips for me too. Too much oil is bad.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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