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Seems Almost Impossible To Stay Gluten Free


bluebonnet

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bluebonnet Explorer

i've been carefully monitoring everything i eat to keep gluten out of my system and 12 days into it and feeling a major difference i think i accidentally ate some. i thought some of my symptoms were the beginning of maybe "withdrawl" but then the all too familiar and painful stomach cramping/bloating developed that i had finally had relief from! i've been keeping a food journal of every bite i eat and i think i have narrowed it down to 3 things-

1) panera bread restaurant's creamy tomato soup- the girl assured me it was gluten free (sans croutons) and no cross contamination so i got a cup. eating out was sooo stressful it wasn't worth it! and i definitely won't be eating there again!!!

2)but then i thought it could have also been the spices i used for our salads at dinner (mccormick oregeno??)

3)i also used hand lotion and after researching this could be the problem i checked the ingredients on the back and it said it contains hydrolyzed wheat protein.

and during my research with the lotion (i understand why lotions are harmful) i noticed people stay away from shampoo/soap/hair spray etc. is it truly necessary to get rid of shampoo and soap and my hair care products as well because they have the forbidden ingredients? i'm confused because i'm not eating those or getting them in my mouth, but is it possible they can still do damage?

i'd appreciate your help and opinions ... its a new way of life and i really want to avoid this from happening again. :)

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happygirl Collaborator

I woud venture it was eating out. Until you heal a bit better, it may be worth it to only eat food you have prepared so that you know it is gluten free. I don't know how they can say they guarantee no cross contamination when they are putting soup into bread bowls.

Hang in there...it will get better!

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ciavyn Contributor

Hi Bluebonnet - and I feel you. I've been doing this for almost three months, and got royally glutened last week. Ugh. I'm still feeling the effects.

I think you are going to risk cross-contamination with anything at Panera. It's a bread place, for goodness sake. I avoid it, outside of their tea and free internet. :)

I use McCormick Oregano all the time without issue.

Hand lotion is definition dangerous because we can use it and then eat, same as with shampoo and conditioner which could get into your mouth while showering.

I went through a similar situation early on - still do now and then - and it's either cc-ing which you can't always control, or it could be that your system is still healing. They say it can take 6 mo. to a year or LONGER, and sometimes your system is going to react just because.

Hang tight - eating out isn't as fun, that's for sure, but I like my food better anyway. ;) Good luck!

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bluebonnet Explorer

thanks for the encouragement! that 1 incident just threw me for a loop especially because i've been so careful. i will gladly give up eating out for peace of mind that i truly am staying gluten free. i have also gone through my lotions, hair products (so long bumble and bumble!) and everything else i didn't realize could mess me up. i also traded my current vitamins for the gnc women's ultra mega vitamins. so other than watching out for cross contamination i think i'm back on track! :)

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passionfruit877 Apprentice

Hi! I have been gluten free for about 3 months now so I know how you feel. I think it is interesting that I also get stomach cramps, and when I eat gluten my stomach swells up like a giant balloon and I get constipated. I think it is best to avoid eating out for now. Cross contamination can be difficult depending on how sensitive you are. I have eating something a a restaurant and been fine with it, and then when I went again and got the same thing, it made me sick. You will eventually find places where you can eat a few things, don't worry.

I was also going to recommend going off dairy if you are still having problems. I was good for the first few weeks on my diet and then started get really bloated again, which frustrated me. I realized it was the milk I was drinking, and now that I avoid dairy and gluten, I do so much better. It seems like a lot of people have trouble with dairy at first.

I know it seems hard at first, but eventually you won't even want the stuff that makes you sick. My favorite restaurant is a hibachi grill and I used to love the noodles with shrimp and veggies. I wanted to cry at the thought of not being able to eat there again. So one day my husband and I went and I got my usual with rice instead of noodles (but with soy sauce and maybe butter). I got so sick! And now the though of that restaurant makes me want to gag. I did the same with a few other foods, just ate them so they would make me sick, and then I didn't even want to smell them after that. Maybe its not the best advice, but it got me through the first month or two. Good luck!

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sandsurfgirl Collaborator

Creamy thick soups scare me. Before being gluten free I always used wheat flour to thicken my soups. Unless it's a brothy soup, and even then I will ask a lot of questions, I'm going to assume they made a roux with flour and butter to thicken it. Same with gravies.

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Takala Enthusiast

Never touch a soup from a restaurant, unless it's a restaurant that is exclusively gluten free. You don't know where the ladle has been in that kitchen. I would not touch anything from Panera, being a bakery, the entire shop would be contaminated with wheat flour.

I just googled "Panera Creamy Tomato Soup" and the net is full of recipes and they have flour in it, duh ! Wheat flour is a standard thickener.

It would be easy to duplicate with a gluten free flour substitute. There are also gluten free boxed tomato soups, like Imagine, that are found in some regular groceries.

Unfortunately, many waiters and waitresses are ditzes. They don't mean to be, but.... We went to a restaurant last month that is near the coast, where I usually can pick up just a plain steak, potato, and salad, and the menu has been totally revamped so there is now no plain steak, nor plain potatoes available. I asked. It's all sauce this or seasoned that. Almost everything on the dinner menu. The only beef is pot roast. Even most of the seafood is sauced.

I scrutinized the menu again, explained what they needed to ask the chef/cook, and sent them back again to the kitchen to negotiate. They come back and try to reassure me there is no gluten in several items I know will have a very "iffy" gluten status. And they have no naked steaks!!! I know better than to try a grilled chicken breast, as so many chicken distributors put strange things into frozen chickens, and this place now seems to be Fussy Sauce Central. You know, they take a really big square plate, plunk something on it that was cooked in liquor reduced to a glaze, and then dribble goop all over it in patterns, with a side of rice contaminated with vermicelli or potato au gratin baked in cream sauce.

I'm like, .... no.

This is in an area where the tourists eat, and many older people have dietary restrictions anyway, so I'm wondering what they were thinking here.

I ended up with plain grilled fish and plain vegetables, but this is about the 3rd or 4th restaurant I've hit that can't do a baked potato. I'm about ready to start carrying my own. It's beyond ridiculous.

You learn to "pack a snack" in a hurry, as a gluten free lifestyle. For chain restaurants, google gluten free and the name of the chain, and research before you go. I've had good luck at some small non chain restaurants, when and if they can get me something edible that works, we tend to go back and talk them up : )

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bluebonnet Explorer

i knew it was risky meeting my friend at a restaurant known for their awesome baked goods but of course i believed the girl at the counter when she said they do offer a couple of gluten free dishes ... (she looked it up in their binder of foods and everything so i thought it was alright.)

i looked up the their website too and found wheat listed so i'm really frustrated with myself for trusting her (as well as them being irresponsible!) as now i'm dealing with the "aftermath".

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ciavyn Contributor

i knew it was risky meeting my friend at a restaurant known for their awesome baked goods but of course i believed the girl at the counter when she said they do offer a couple of gluten free dishes ... (she looked it up in their binder of foods and everything so i thought it was alright.)

i looked up the their website too and found wheat listed so i'm really frustrated with myself for trusting her (as well as them being irresponsible!) as now i'm dealing with the "aftermath".

Don't be so hard on yourself. :) You are human, and this is a tough thing to deal with. It's a hard lesson. I just had dinner out last night at a GIG approved restaurant in my area that really caters to those of us that are gluten free. It was amazing, and I feel fine. They are out there. And when you are meeting a friend for lunch, research it before hand really, really well, and when in doubt, bring your own food. If the restaurant has a problem with it, explain your issues. Most will prefer avoiding a law suit over you buying a $6 sandwich. You'll learn the ropes - we are all in this together! :D

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tmbarke Apprentice

Don't be so hard on yourself. :) You are human, and this is a tough thing to deal with. It's a hard lesson. I just had dinner out last night at a GIG approved restaurant in my area that really caters to those of us that are gluten free. It was amazing, and I feel fine. They are out there. And when you are meeting a friend for lunch, research it before hand really, really well, and when in doubt, bring your own food. If the restaurant has a problem with it, explain your issues. Most will prefer avoiding a law suit over you buying a $6 sandwich. You'll learn the ropes - we are all in this together! :D

I feel for all of us that come across the risk of eating out....Ciavyn, I'm curious about your comment of a lawsuit.....if you have the info about those rights, please share. I've been extremely pissed off before due to ignorance at restaurants...Just wanting some ammunition if needed, not for power, but for ignorance.

My last experience was taking my mom out for brunch on Sunday...My waitress had an attitude for starters which made the experience to work with her a CHORE. I finally ordered what I usually do...steak no seasoning, eggs over easy, unseasoned hashbrowns with onion....and my mom can eat the toast......They put the toast on my eggs on the plate! Biatch! Then when I wanted to order 2 new eggs...she didn't come back around until half of my steak was gone. I explained to her about the mistake and she rolled her eyes at me to get the eggs....well, long story short - I told the cashier about the experience cuz they always ask..."how was everything?" I didn't hesitate one bit! She ended up charging me for only the eggs and toast, took the coffees off (cuz we sat for 15 min without 'em then the meal came) and also gave me a 15% discount.....I'll have to say, there ARE some advantages to stupidity but.....my mom felt terrible for me and saw the color of my face change then and again at the grocery store and was almost scared for me.

I never have a bad experience like that!

I usually make repeat visits to the places I have been able to work with and in fact, if I ask about something, they bring me the label or container now so I can read the ingredients...and that makes me feel so understood and accepted.

Normally I just have coffee at a place like Panera for fear of the enviroment, but had no clue I could bring something of my own.....only do that with salad dressing usually.

BlueBonnet....if a friend asks to meet somewhere - suggest Olive Garden. They have a gluten-free menu and I walked out of there feeling special and wonderful for the whole day! They have a gluten-free pasta with sauce and the salad to boot is gluten-free. and have a glass of wine too....it'll make you feel special too.

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mbrookes Community Regular

I've been gluten free for a little over two years and have learned a few tricks, but I think we all get "poisoned" occasionally.

Shampoo? How often do you get it in your mouth? Close your mouth in the shower.

If you find a restaurant willing to work with you, become a regular. That way they will know you and what you need. A couple of places here have special pans they cook my food in. How special is that?

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ciavyn Contributor

I feel for all of us that come across the risk of eating out....Ciavyn, I'm curious about your comment of a lawsuit.....if you have the info about those rights, please share. I've been extremely pissed off before due to ignorance at restaurants...Just wanting some ammunition if needed, not for power, but for ignorance.

My last experience was taking my mom out for brunch on Sunday...My waitress had an attitude for starters which made the experience to work with her a CHORE. I finally ordered what I usually do...steak no seasoning, eggs over easy, unseasoned hashbrowns with onion....and my mom can eat the toast......They put the toast on my eggs on the plate! Biatch! Then when I wanted to order 2 new eggs...she didn't come back around until half of my steak was gone. I explained to her about the mistake and she rolled her eyes at me to get the eggs....well, long story short - I told the cashier about the experience cuz they always ask..."how was everything?" I didn't hesitate one bit! She ended up charging me for only the eggs and toast, took the coffees off (cuz we sat for 15 min without 'em then the meal came) and also gave me a 15% discount.....I'll have to say, there ARE some advantages to stupidity but.....my mom felt terrible for me and saw the color of my face change then and again at the grocery store and was almost scared for me.

I never have a bad experience like that!

I usually make repeat visits to the places I have been able to work with and in fact, if I ask about something, they bring me the label or container now so I can read the ingredients...and that makes me feel so understood and accepted.

Normally I just have coffee at a place like Panera for fear of the enviroment, but had no clue I could bring something of my own.....only do that with salad dressing usually.

BlueBonnet....if a friend asks to meet somewhere - suggest Olive Garden. They have a gluten-free menu and I walked out of there feeling special and wonderful for the whole day! They have a gluten-free pasta with sauce and the salad to boot is gluten-free. and have a glass of wine too....it'll make you feel special too.

There is always risk of law suit in any situation, especially when someone has a health issue. I don't recommend it, though. Quite honestly, look how hard it is for those of us with this issue to moderate what we eat in our own homes. So I'm not sue happy...but restaurants are scared of losing business or worse yet being sued. Most restaurants are not big money making affairs. They run a tight profit margin. So they are very interested in making you happy and navigating any allergy issues. Plus, if they treat you right, you are more likely to return, and bring friends. That is the bread and butter of their business.

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digmom1014 Enthusiast

i knew it was risky meeting my friend at a restaurant known for their awesome baked goods but of course i believed the girl at the counter when she said they do offer a couple of gluten free dishes ... (she looked it up in their binder of foods and everything so i thought it was alright.)

i looked up the their website too and found wheat listed so i'm really frustrated with myself for trusting her (as well as them being irresponsible!) as now i'm dealing with the "aftermath".

I went on the web and printed out various gluten-free restaurant menu's, put them in a notebook, and kept it in my trunk. That way you are never caught off-guard when someone suggests a lunch.

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bluebonnet Explorer

great ideas ... thanks for all the tips! :)

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Nor-TX Enthusiast

I am planning a restaurant outing this weekend - my 60th birthday. I thought I would go for sushi and have just the sashimi, sticky rice. I plan to bring my own gluten-free soy sauce. My hubby can indulge in all the other goodies at the buffet. I'm satisfied with sashimi and steamed crab legs...

Anyone had any experiences at a Sushi restaurant?

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one more mile Contributor

It is not impossible but there is a learning curve. People that serve food would not know if something is manufactured with gluten. Even if they mean well. Check the web site. I would not risk eating some place that has bread crumbs flying all over. It is to easy for cross contamination. Eating out is a gamble. I found a few places I can eat and stick to them.

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DownWithGluten Explorer

Oh wow. That sucks about the Panera incident. They DO allegedly have some gluten-free items (like greek salad etc.) but for some reason I've been too afraid to give it a shot. Your story doesn't help. :P

But that they actually list it as having wheat on their web site...that girl at the counter should have known better. I'm sorry that it happened. :( It is frustrating when it happens. I've been gluten free 3 years now, and praise Jesus have only gotten "glutened" two times...once at a place that allegedly serves gluten free stuff (which I ate fine at another time), then movie popcorn from a company I hadn't double-checked with first. It is frustrating...but not nearly as frustrating as when it used to happen ALL the time and I had NO clue what was causing it!! (Before I went gluten free I mean).

So hang in there. You'll learn not to trust things, become a bit paranoid like I have. Basically my mantra is when in doubt, don't. Unless I'm SURE that I've validated somewhere (online, this board, calling) that the product is gluten free, or the restaurant has a gluten free menu, etc...I don't eat it. I don't care if everyone around me is all "b-but it doesn't have wheat in the ingredients..." you never know what is lurking in hidden ingredients (malt for example).

So...yyeah. Also, like others here, McCormick oregano is fine for me. I've also never paid attention to lotions/shampoo and ...haven't had a problem. *shrugs*

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ShoreGirl Newbie

I am planning a restaurant outing this weekend - my 60th birthday. I thought I would go for sushi and have just the sashimi, sticky rice. I plan to bring my own gluten-free soy sauce. My hubby can indulge in all the other goodies at the buffet. I'm satisfied with sashimi and steamed crab legs...

Anyone had any experiences at a Sushi restaurant?

I love Sushi almost all things, You can do alot of fun rolls without the sauces they recommend as they have soy sauce in them. Also they can substitute crab from the rolls. NO eel! No tempura fried anything. Edamame is a nice side snack too.

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sandsurfgirl Collaborator

I feel for all of us that come across the risk of eating out....Ciavyn, I'm curious about your comment of a lawsuit.....if you have the info about those rights, please share. I've been extremely pissed off before due to ignorance at restaurants...Just wanting some ammunition if needed, not for power, but for ignorance.

My last experience was taking my mom out for brunch on Sunday...My waitress had an attitude for starters which made the experience to work with her a CHORE. I finally ordered what I usually do...steak no seasoning, eggs over easy, unseasoned hashbrowns with onion....and my mom can eat the toast......They put the toast on my eggs on the plate! Biatch! Then when I wanted to order 2 new eggs...she didn't come back around until half of my steak was gone. I explained to her about the mistake and she rolled her eyes at me to get the eggs....well, long story short - I told the cashier about the experience cuz they always ask..."how was everything?" I didn't hesitate one bit! She ended up charging me for only the eggs and toast, took the coffees off (cuz we sat for 15 min without 'em then the meal came) and also gave me a 15% discount.....I'll have to say, there ARE some advantages to stupidity but.....my mom felt terrible for me and saw the color of my face change then and again at the grocery store and was almost scared for me.

I never have a bad experience like that!

I usually make repeat visits to the places I have been able to work with and in fact, if I ask about something, they bring me the label or container now so I can read the ingredients...and that makes me feel so understood and accepted.

Normally I just have coffee at a place like Panera for fear of the enviroment, but had no clue I could bring something of my own.....only do that with salad dressing usually.

BlueBonnet....if a friend asks to meet somewhere - suggest Olive Garden. They have a gluten-free menu and I walked out of there feeling special and wonderful for the whole day! They have a gluten-free pasta with sauce and the salad to boot is gluten-free. and have a glass of wine too....it'll make you feel special too.

I think to threaten a lawsuit is a very BAAADDDD idea for a number of reasons. First of all they don't have to provide you with anything. They cook what they cook and you can choose not to eat there. You don't have a "right" to eat at someone's restaurant the way you want to eat and the things you want or need to eat. Second of all, all allergic and celiac people need those waiters and chefs to watch out for us, and if someone goes in there like a bull in a china shop demaning this and that from them, they are going to quit going out of their way for ALL of us.

How did you explain it to the waitress? Did you explain that even crumbs can give you a serious reaction? Were you nice when you asked or were you demanding? I waitressed all through college and it is a total pain to deal with special orders and allergies. It disrupts your work flow and can make you get behind. I never minded when somebody was nice and I went way out of my way. If somebody was demanding it really made me mad. I never did anything horrible to someone's food, but spit DOES happen.

If ONE person sues them or threatens to sue them, then all they will do is say that they can't guarantee that any of their food is gluten free, corn free, soy free or whatever and we will be left with no options. Many places already do that, especially beauty products. I can't blame them either because they know that if they try to help people out, somebody with a chip on their shoulder might sue them and why risk it? I own a business, not food related, but if I did have a food business and some unreasonable person screwed me over, then you bet I would take the CYA route and never ever again try to accomodate a person with allergies. It's just smart business sense to protect yourself.

Celiac disease may seem common to us but it's not that common at this point. In all my years of waitressing through college I only had a handful of people with these types of special requests. In 10 years of teaching school I only had a handful of kids with food allergies that we had to accomodate at parties, etc. We are asking them to go out of their way for us and we need to be nice to get them to help us out.

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psawyer Proficient

I think to threaten a lawsuit is a very BAAADDDD idea for a number of reasons. First of all they don't have to provide you with anything. They cook what they cook and you can choose not to eat there. You don't have a "right" to eat at someone's restaurant the way you want to eat and the things you want or need to eat. Second of all, all allergic and celiac people need those waiters and chefs to watch out for us, and if someone goes in there like a bull in a china shop demanding this and that from them, they are going to quit going out of their way for ALL of us.

How did you explain it to the waitress? Did you explain that even crumbs can give you a serious reaction? Were you nice when you asked or were you demanding? I waitressed all through college and it is a total pain to deal with special orders and allergies. It disrupts your work flow and can make you get behind. I never minded when somebody was nice and I went way out of my way. If somebody was demanding it really made me mad. I never did anything horrible to someone's food, but spit DOES happen.

If ONE person sues them or threatens to sue them, then all they will do is say that they can't guarantee that any of their food is gluten free, corn free, soy free or whatever and we will be left with no options. Many places already do that, especially beauty products. I can't blame them either because they know that if they try to help people out, somebody with a chip on their shoulder might sue them and why risk it? I own a business, not food related, but if I did have a food business and some unreasonable person screwed me over, then you bet I would take the CYA route and never ever again try to accommodate a person with allergies. It's just smart business sense to protect yourself.

Celiac disease may seem common to us but it's not that common at this point. In all my years of waitressing through college I only had a handful of people with these types of special requests. In 10 years of teaching school I only had a handful of kids with food allergies that we had to accommodate at parties, etc. We are asking them to go out of their way for us and we need to be nice to get them to help us out.

For all the reasons cited, and more, a suit is just the wrong thing. Mistakes will happen, but let us work with product providers, and help them learn about out needs. If a vendor is sued then they will just stop making any claim about gluten. Ten other companies will notice the suit, and quietly stop making any statements about gluten. We all lose (except for the lawyers).

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sandsurfgirl Collaborator

I wanted to add that you really can't fault a waiter or chef for ignorance. It's their job to learn to prepare and serve food. They aren't a doctor or dietitian. It's our job to educate them.

I think it's important to use the word allergy because that resonates and it's fast. When a customer told me that they had an allergy my ears perked up and I had images of anaphylaxis and hives. My eyes would have glossed over if somebody started going on and on about celiac, and intolerances, and blah blah.

It's very simple to say "I am so severely allergic to the wheat in the toast that even crumbs can make me sick." You can also say "Wheat and barley are in nearly everything as flavorings, so would you mind if I ask some questions about ingredients because even small amounts make me really sick."

Use words that are simple and understandable and be very clear. I know you want to let your mom have the toast, but honestly that's confusing to the waitress when she gets back there and she is dealing with 4 orders coming out and trying to remember what your issue is. You ordered toast so in her mind it was probably okay to put it on the eggs.

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Squirrelflight Rookie

I wanted to add that you really can't fault a waiter or chef for ignorance. It's their job to learn to prepare and serve food. They aren't a doctor or dietitian. It's our job to educate them.

I think it's important to use the word allergy because that resonates and it's fast. When a customer told me that they had an allergy my ears perked up and I had images of anaphylaxis and hives. My eyes would have glossed over if somebody started going on and on about celiac, and intolerances, and blah blah.

It's very simple to say "I am so severely allergic to the wheat in the toast that even crumbs can make me sick." You can also say "Wheat and barley are in nearly everything as flavorings, so would you mind if I ask some questions about ingredients because even small amounts make me really sick."

Use words that are simple and understandable and be very clear. I know you want to let your mom have the toast, but honestly that's confusing to the waitress when she gets back there and she is dealing with 4 orders coming out and trying to remember what your issue is. You ordered toast so in her mind it was probably okay to put it on the eggs.

I've seen it here a few times suggested to say you have an allergy instead of celiac bc people know what that is. But if we don't tell them how will anyone ever know?? It doesn't have to be a long drawn out blah blah thing either. I simply say I have celiac disease and react very strongly to wheat, barley, and rye and cant have those anywhere near my food. But just saying wheat allergy perpetuates the problem of servers not knowing what celiac is or what the needs are. And as said, it is our job to educate them on our condition and needs. :)

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jacnit Newbie

i've been carefully monitoring everything i eat to keep gluten out of my system and 12 days into it and feeling a major difference i think i accidentally ate some. i thought some of my symptoms were the beginning of maybe "withdrawl" but then the all too familiar and painful stomach cramping/bloating developed that i had finally had relief from! i've been keeping a food journal of every bite i eat and i think i have narrowed it down to 3 things-

1) panera bread restaurant's creamy tomato soup- the girl assured me it was gluten free (sans croutons) and no cross contamination so i got a cup. eating out was sooo stressful it wasn't worth it! and i definitely won't be eating there again!!!

2)but then i thought it could have also been the spices i used for our salads at dinner (mccormick oregeno??)

3)i also used hand lotion and after researching this could be the problem i checked the ingredients on the back and it said it contains hydrolyzed wheat protein.

and during my research with the lotion (i understand why lotions are harmful) i noticed people stay away from shampoo/soap/hair spray etc. is it truly necessary to get rid of shampoo and soap and my hair care products as well because they have the forbidden ingredients? i'm confused because i'm not eating those or getting them in my mouth, but is it possible they can still do damage?

i'd appreciate your help and opinions ... its a new way of life and i really want to avoid this from happening again. :)

someone on this forum suggested that i get the book "gluten free for dummies" a few weeks ago as i was exactly where you are now..OH MY GOSH...i got this book on amazon and read it in one afternoon and it has cleared up SO many issues for me..it's very easy to read, kinda funny but extremely helpful. So much in it that I didn't know & understand now about gluten..i suggest you get this book!! good luck! one small thing I try to remind myself when i go out now or at the grocery that the author stresses in this book is to keep it simple..basic, clean foods for now until i get it under control.

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sandsurfgirl Collaborator

I've seen it here a few times suggested to say you have an allergy instead of celiac bc people know what that is. But if we don't tell them how will anyone ever know?? It doesn't have to be a long drawn out blah blah thing either. I simply say I have celiac disease and react very strongly to wheat, barley, and rye and cant have those anywhere near my food. But just saying wheat allergy perpetuates the problem of servers not knowing what celiac is or what the needs are. And as said, it is our job to educate them on our condition and needs. :)

I know what you're saying, but practically speaking, it's not really much different. You can get the same symptoms from a food allergy reaction, and allergies can be even more dangerous because of anaphylaxis. I do use the word celiac disease so they know what it is, but my main goal is not to get glutened and let them know it's serious.

I also don't use words like cross contamination. You have to be very specific. "Things with wheat can't touch my food because crumbs make me very sick." "There are many additives made from barley, wheat and rye. Can I please look at the ingredients?"

Interestingly, I found an old list of allergens in Aveda products from the company by searching these forums. I sent them an email asking for an updated list and I got a form letter, obviously prepared by a lawyer from the language used, stating that they cannot guarantee that allergens aren't in their products, they don't offer any lists, and I should talk to my physician before I use their products.

I am 100% certain that somebody threatened to sue them or sued them and that's why they are NO LONGER willing to help people with allergies and celiac. It's sad that we will lose valuable resources because businesses have to operate in fear.

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samcarter Contributor

I never assume others understand what celiac disease or gluten intolerance is. At our homeschooling group a few weeks ago, the kids were making cat and dog treats, and catnip pillows, for the local humane society. The mom in charge asked me to help the kids with the treats; I asked to see the recipe, and it called for flour. I told her I had celiac disease and shouldn't be near the flour, since wheat makes me sick. She said, "Oh, this is white flour, not wheat." I said, "if it's all-purpose flour, it's made of wheat." She said, "Really?!" Oh. My. Gosh. So I stationed myself at the catnip pillows table. :)

So I never assume a waitress will understand what I mean when I say, "I can't eat wheat." The waitress may have thought there's no way the soup had flour in it, and that as long as the croutons weren't on it, you were okay with it. Panera is such a bread-filled place, I don't eat there anymore because cross-contamination is so likely.

And about shampoos and lotions. For a looong time I thought i didn't need to worry about them. But I've had a bad rash on my forehead now for about two months, ever since I started using a new shampoo...and I just now read the label and it has wheat protein in it. I stopped using it, switched to a gluten-free shampoo and facial cleanser, and already my skin is getting better. It is possible for the wheat to irritate one's skin, or to cause an allergic reaction, if you have celiac. But it's not hard to find gluten-free products! Really. Dove will always list wheat, and Shikai makes nice shampoos and conditioners that are gluten free.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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