Finally Diagnosed And Wondering If I Have To Live In A Bubble...

[Coconutkris]

I self-diagnosed myself gluten-sensitive about 5 years ago.  I had horrible symptoms (bloating, nausea, gas, fatigue, migraines etc) and did a ton of research before figuring out it had to be wheat- sure enough, after cutting it out I got better.

 

I never considered Celiac Disease.  I just assumed I was extremely sensitive to gluten (and who isn't these days, wheat is so modified and terrible!) and actively avoided it.  So, while I avoided eating things like bread and pasta, I would occasionally eat soy sauce, or have oats, buy from the bulk bin and I have eaten out almost daily as I travel, am busy, and live in studio where cooking is a pain.  I recently discovered that my entire family on my dad's side has Celiac disease. I was having some symptoms and so I immediately told my doctor and was tested.  The results were positive for carrying the gene (I only did genetic testing since with my symptoms and family history the doctor thought it would be enough to give a pretty accurate diagnosis- I didn't think I could handle eating the gluten required for the other tests).  I know the diagnosis isn't 100% accurate with only the genetic testing, but I accidentally ate gluten a week ago (was an item off a gluten free menu that they did not make correctly and they used wheat crust) and I was so sick I thought I might die (that's the most wheat I've consumed in years).  So- symptoms, genetic test, and the fact that everyone on my dad's side has it seems to be enough for me.... should I eat gluten and get the other tests?  I don't feel that I need to but I suppose maybe some people here will have thoughts on that...

 

I've done a lot of research in the last week a on living with Celiac Disease and it seems that you should never eat out, never eat from the to-go section (Whole Foods hot bar etc), never eat any food that was produced in a facility that also processes wheat, never buy from the bulk section etc...

 

I do not believe in eating processed foods- so pretty much the entire gluten-free section is out for me.   (I find I react even to gluten-free oats and corn as well- cross-reactors) I'm thinking I need to cook all of my meals from scratch in a gluten-free environment- is this what you all do?

 

I spend almost all day in someone else's house and the kitchen is filled with gluten products-there are crumbs everywhere and the kids are always baking (which seems to make me ill, flour in the air?) I also feel ill when I have to cook pasta for the kids or make them sandwiches and touch the bread..I know this is not in my head as I was experiencing this prior to my diagnosis (maybe I have a topical wheat allergy as well).  I'm now frantically washing my hands (because what if I touch my mouth etc!)

 

I'm afraid to even heat up my own food in their pots or oven or cut anything for myself on their cutting boards...

 

Today I was buying veggies at the store for soup and the woman behind me in line plopped down a large bag of flour on the conveyor belt and some flour misted out and now I'm scared to eat my vegetables!!! Arghhh!

 

I find myself not eating because I'm scared to...I seem to react to nearly all the gluten-cross reactors as well so dairy and eggs are out and nuts, grains, beans as well for the most part....sigh.  I just feel like at this rate I am going to lose every bit of weight and muscle on  me and I'm already underweight.

 

Sorry this is all over the place...to narrow it down, a few questions...

 

-What do you do on road trips, or long days where you really don't have the option to carefully prepare your own meals?  Do you rely on certified gluten free packaged snacks in order to have something 'safe' to eat?

-Are there any go-to snacks that are easily portable and healthy that any of you can recommend?

-what do you do when it comes to eating out?

-how careful and strict are you about avoiding any possible source of gluten contamination?

-do you ever feel terrified about food being contaminated? (apparently even gluten-free food likely has some level of gluten)

-how do you deal with people dismissing the seriousness of your disease as if it is a choice or an excuse not to eat!???  (people think I'm anorexic because my diet is so limited and I am thin from not absorbing nutrients- I DO eat -lots of fats like coconut oil and pastured meats, but I just don't eat 'normal' food and being social these days is next to impossible...)

 

I just feel like nothing is safe and the entire world is filled with gluten!!!!

[kareng]

If you had positive blood antibodies for Celiac, after 5 years you thought were gluten free, I guess you now know you weren't very gluten-free. So you will want to really tighten up your diet.

Read the newbie thread to get started.

https://www.celiac.com/forums/topic/91878-newbie-info-101/page-2#entry896943

[Coconutkris]

I should have clarified (edited now above)- I've had huge issues with wheat in the past when I was eating it- all the classical signs of gluten-intolerance.  So I avoided it fairly strictly aside from possible cc and soy sauce on occasion.  When I found out practically everyone on my dad's side has Celiac Disease (I never knew this as we don't talk) I decided to get tested- I didn't think my system could handle consuming gluten so I only did the genetic testing- my doctor said that with my list of symptoms and family history that would be all that was needed.  Ironically, the day before I got the results of my genetic test I ordered something off a gluten-free menu and they made it using a gluten crust- halfway into eating it I realized.  I immediately was ill (and still am)  I told my doctor that the day that he gave me my results and he said there's no doubt in his mind that I have Celiac... soo....no, I haven't been running around consuming gluten these last five years though I'm sure I've had quite a bit of cc and that has been enough to keep me feeling less than well...

 

If you had positive blood antibodies for Celiac, after 5 years you thought were gluten free, I guess you now know you weren't very gluten-free. So you will want to really tighten up your diet.

 

Read the newbie thread to get started.

https://www.celiac.com/forums/topic/91878-newbie-info-101/page-2#entry896943

[kareng]

I should have clarified- I've had huge issues with wheat in the past when I was eating it- all the classical signs of gluten-intolerance.  So I avoided it fairly strictly aside from possible cc and soy sauce on occasion.  When I found out practically everyone on my dad's side has Celiac Disease I decided to get tested- I didn't think my system could handle consuming gluten so I only did the genetic testing- my doctor said that with my list of symptoms and family history that would be all that was needed.  Ironically, the day before I got the results of my genetic test I ordered something off a gluten-free menu and they made it using a gluten crust- halfway into eating it I realized.  I immediately was ill (and still am)  I told my doctor that the day that he gave me my results and he said there's no doubt in his mind that I have Celiac... soo....no, I haven't been running around consuming gluten, thanks for your 'advice' though.

I was just responding to your posts, but apparently, the advice I give most people is not right for you. That is your choice. You did say you eat soy sauce, etc and in another post that you eat out every day and are in an environment with flour in the air you are swallowing, etc. I am sorry you don't think you need to eliminate these things nor that reading the newbie thread is helpful.

Still, I would urge you to read on this forum for coping, cooking, & cc info. Look at medical based sites for reputable info about Celiac. Good luck and I hope you get everything sorted out.

[Coconutkris]

I was just responding to your posts, but apparently, the advice I give most people is not right for you. That is your choice. You did say you eat soy sauce, etc and in another post that you eat out every day and are in an environment with flour in the air you are swallowing, etc. I am sorry you don't think you need to eliminate these things nor that reading the newbie thread is helpful.

Still, I would urge you to read on this forum for coping, cooking, & cc info. Look at medical based sites for reputable info about Celiac. Good luck and I hope you get everything sorted out.

I just feel like people come on here for support, not to be made to feel like they are complete idiots who know nothing about how to manage their own health, esp. from a moderator.  I have ACCIDENTALLY eaten things containing non-gluten-free soy sauce about twice.  I eat out regularly but only at organic restaurants with a plethora of gluten-free options and specified gluten-free menus (I'm in SF, they are everywhere).  I eat from the hot bar at a natural foods store but only items like steamed broccoli and sweet potatoes where the ingredients are clearly stated.  I went to these lengths prior to knowing about Celiac so I think I am pretty responsible and well-informed when it comes to my health.

 

Now that it is safe to say I have Celiac I have some questions and am seeking support.  My questions are what does everyone here do- do you cook only in your own kitchen or do you ever eat out? Do you feel like you get a reaction just from touching flour?  From all I have read you really need to be in a bubble and be crazy careful and I am MORE than willing to jump on the bandwagon and become even more of a food-nazi than I already am!  I just want to know what everyone else is doing, how everyone else is dealing, and get some support- food sensitivities are not new to me, auto-immune diseases however are.  I count myself lucky that I've been in tune with my body enough to have cut out gluten years ago, and that I've been able to finally discover what is going on with my body so I can do something about it.  So yes, I am reading all the forums on here.

 

And fyi, I DO think I need to cut those things out (thanks for assuming I didn't) I just wanted to know what everyone else thinks, do they freak out around bread crumbs and when they see flour on the conveyor belt next to their veggies, etc!  Not here to start an argument about how 'right' I am in all this or to be told that I am wrong- here for SUPPORT!!!!!!!!!!!!!!!!!!!

[shadowicewolf]

I just feel like people come on here for support, not to be made to feel like they are complete idiots who know nothing about how to manage their own health, esp. from a moderator.  I have ACCIDENTALLY eaten things containing non-gluten-free soy sauce about twice.  I eat out regularly but only at organic restaurants with a plethora of gluten-free options and specified gluten-free menus (I'm in SF, they are everywhere).  I eat from the hot bar at a natural foods store but only items like steamed broccoli and sweet potatoes where the ingredients are clearly stated.  I went to these lengths prior to knowing about Celiac so I think I am pretty responsible and well-informed when it comes to my health.

 

Now that it is safe to say I have Celiac I have some questions and am seeking support.  My questions are what does everyone here do- do you cook only in your own kitchen or do you ever eat out? Do you feel like you get a reaction just from touching flour?  From all I have read you really need to be in a bubble and be crazy careful and I am MORE than willing to jump on the bandwagon and become even more of a food-nazi than I already am!  I just want to know what everyone else is doing, how everyone else is dealing, and get some support- food sensitivities are not new to me, auto-immune diseases however are.  I count myself lucky that I've been in tune with my body enough to have cut out gluten years ago, and that I've been able to finally discover what is going on with my body so I can do something about it.  So yes, I am reading all the forums on here.

 

And fyi, I DO think I need to cut those things out (thanks for assuming I didn't) I just wanted to know what everyone else thinks, do they freak out around bread crumbs and when they see flour on the conveyor belt next to their veggies, etc!  Not here to start an argument about how 'right' I am in all this or to be told that I am wrong- here for SUPPORT!!!!!!!!!!!!!!!!!!!

Celiac isn't like an allergy in the slightest, you have to be extra careful. Some eat out, others do not. It doesn't matter how organic or clearly listed ingredients are, there is always a chance of being CC'd. Who is to say that someone did not use the serving spoon from one dish into another?

 

Would i freak out about the conveyor belt? No, because the veggies would be washed.

[kareng]

I just feel like people come on here for support, not to be made to feel like they are complete idiots who know nothing about how to manage their own health, esp. from a moderator. I have ACCIDENTALLY eaten things containing non-gluten-free soy sauce about twice. I eat out regularly but only at organic restaurants with a plethora of gluten-free options and specified gluten-free menus (I'm in SF, they are everywhere). I eat from the hot bar at a natural foods store but only items like steamed broccoli and sweet potatoes where the ingredients are clearly stated. I went to these lengths prior to knowing about Celiac so I think I am pretty responsible and well-informed when it comes to my health.

Now that it is safe to say I have Celiac I have some questions and am seeking support. My questions are what does everyone here do- do you cook only in your own kitchen or do you ever eat out? Do you feel like you get a reaction just from touching flour? From all I have read you really need to be in a bubble and be crazy careful and I am MORE than willing to jump on the bandwagon and become even more of a food-nazi than I already am! I just want to know what everyone else is doing, how everyone else is dealing, and get some support- food sensitivities are not new to me, auto-immune diseases however are. I count myself lucky that I've been in tune with my body enough to have cut out gluten years ago, and that I've been able to finally discover what is going on with my body so I can do something about it. So yes, I am reading all the forums on here.

And fyi, I DO think I need to cut those things out (thanks for assuming I didn't) I just wanted to know what everyone else thinks, do they freak out around bread crumbs and when they see flour on the conveyor belt next to their veggies, etc! Not here to start an argument about how 'right' I am in all this or to be told that I am wrong- here for SUPPORT!!!!!!!!!!!!!!!!!!!

You are new here. I have no way of knowing that when you say you ate, soy sauce, for example, that it was twice in five years. Or even that it was an accident. We all have an occasional accident but I couldn't tell from your post. You said you tested positive for Celiac, so it would seem that you must have been eating some gluten. There was no explanation of how you came to that diagnosis. I'm not trying to argue..... I am just responding to the info I was given. Usually, with a newly diagnosed Celiac, we like them to start slowly, at the beginning and not to over react, panic or get too down. We urge them to look around and read other's posts as many only read their own.

Obviously, we got off to a bad start. Whatever I say will not be helpful to you. I will let others say the same things and only chime in if there is something not supported by facts.

Edited: I see you added some of the info to your original post.

[glutenfreeliac]

So, yes. i do feel like I need to cook more, but that is mostly because I get a bit fatigued by the menu dance at new restaurants. But I love cooking so this works for me. When we go out for "normal" meals, we go to trusted restaurants and I order from a very limited menu. Or, I know what's safe at these places, and don't try to get too adventurous.

 

That being said, we eat out about four or five times a week. That's not counting work meals (fraught!, but manageable; I have a lot of business lunches, most of which I try to control [control freak!], but must be flexible). Based on your initial post, you may be very sensitive to gluten. Every body (and everybody) is different, and part of this journey is determining what makes us sick.

 

Living gluten free isn't living in a bubble, but it does mean constant attention to what goes in our mouths. We all make mistakes. Honestly, sometimes I've had (mental) symptoms from foods I've convinced myself had gluten (but didn't). It's a process. 

 

I just feel like people come on here for support, not to be made to feel like they are complete idiots who know nothing about how to manage their own health, esp. from a moderator.  I have ACCIDENTALLY eaten things containing non-gluten-free soy sauce about twice.  I eat out regularly but only at organic restaurants with a plethora of gluten-free options and specified gluten-free menus (I'm in SF, they are everywhere).  I eat from the hot bar at a natural foods store but only items like steamed broccoli and sweet potatoes where the ingredients are clearly stated.  I went to these lengths prior to knowing about Celiac so I think I am pretty responsible and well-informed when it comes to my health.

 

Now that it is safe to say I have Celiac I have some questions and am seeking support.  My questions are what does everyone here do- do you cook only in your own kitchen or do you ever eat out? 

[kareng]

 

 

Would i freak out about the conveyor belt? No, because the veggies would be washed.

Actually....I would freak out, in my head for a minute. I don't like to put my produce in plastic bags if I can help it. But then, I would go home and wash them really well. If they were in a plastic bag, I wouldn't worry . I don't set dirty grocery bags on my clean counter.

But, since she was new, I wanted to make sure she knew the basics before I admitted to a slight freak out.

[nvsmom]

 

Sorry this is all over the place...to narrow it down, a few questions...

 

-What do you do on road trips, or long days where you really don't have the option to carefully prepare your own meals?  Do you rely on certified gluten free packaged snacks in order to have something 'safe' to eat?

-Are there any go-to snacks that are easily portable and healthy that any of you can recommend?

-what do you do when it comes to eating out?

-how careful and strict are you about avoiding any possible source of gluten contamination?

-do you ever feel terrified about food being contaminated? (apparently even gluten-free food likely has some level of gluten)

-how do you deal with people dismissing the seriousness of your disease as if it is a choice or an excuse not to eat!???  (people think I'm anorexic because my diet is so limited and I am thin from not absorbing nutrients- I DO eat -lots of fats like coconut oil and pastured meats, but I just don't eat 'normal' food and being social these days is next to impossible...)

 

I just feel like nothing is safe and the entire world is filled with gluten!!!!

I do pack almost all of my own food and rarely eat out. Part of that is because I worry about being sick (not worth it for me) and partially it is due to the fact that I have three gluten-free kids who are picky eaters so it's tough to feed them off menus.

I pack my own food when I travel. If I am gone more than a couple of days, I only stay where there is a kitchen.

My go-to snacks are Lara bars, nuts or trail mix, fruits, hard boiled eggs, veggies and coconut cream in coffee or tea.

I am extremely careful about avoiding cc. I haven't been glutened in almost a year.

In Canada, our a belling laws are very clear about gluten. If it says it may contain gluten, or the label is foreign and I have reason not to trust it, then I don't eat it... I would rather be hungry.

As for people who doubt the serious strictness of the gluten-free diet, I stick to my guns and tell them I won't risk my health... Then I change the subject. I tend to hang around with like ,indeed people, and that makes it much easier.

Hang in there. You just need to tweak your diet a bit... You're almost there. It will become second nature soon enough.

[w8in4dave]

I have only been Celiac for a few months. Everything I had bought from a bulk bin I have given away , I won't even eat gluten-free oats. Altho I don't think I am as sensitive as some here, I wouldn't do a Gluten challenge if you paid me! But I am have problems with Liver Enzymes. Drs. keep an eye out on that. Thats the only thing I worry about with people that don't get fully Dx'd. I know it's a choice. But I believe there is more to it than just changing your diet. 

I eat fruits for a snack And I love Craisins !! Dried fruits!! Yumm!! I used to eat out alot!! But lately after being DX'd I don't much anymore. I live in Mi. I don't live in a city, when I do go out I try and pick things on the menu that are naturally Gluten free. I also have a talk with the waitress. It is nice so many people know about Celiac. 

If your afraid to use a cutting board at someone eles house you can make up a lil cooking bag and take over. Have some of the lil plastic cutting boards, your own pans. Your own utensils and such. I am sure if your friend is letting you cook there , they will be very supportive and understanding. And by the way I love the newbie thread. 

If your getting sick from making Pasta and sandwiches for the kids , are they your kids? You can always buy them gluten-free Pasta and Bread. Or they your friends kids? Guess I am a lil confused. Maby let them do what they need to do 1st. So it can all be cleaned up. Then do what you need to do? Or do your stuff 1st. and then let them have at it. 

Well Good luck! Let us know how you do  

[squirmingitch]

Organic restaurants do not mean they are "safe" restaurants for you. You can get as much cross contamination there as anywhere. Since you live in SF & there are many options for you then I would suggest you ONLY eat at totally gluten-free restaurants. Then you don't risk getting cc. 

[IrishHeart]

I just feel like people come on here for support, not to be made to feel like they are complete idiots who know nothing about how to manage their own health, esp. from a moderator.  I have ACCIDENTALLY eaten things containing non-gluten-free soy sauce about twice.  I eat out regularly but only at organic restaurants with a plethora of gluten-free options and specified gluten-free menus (I'm in SF, they are everywhere).  I eat from the hot bar at a natural foods store but only items like steamed broccoli and sweet potatoes where the ingredients are clearly stated.  I went to these lengths prior to knowing about Celiac so I think I am pretty responsible and well-informed when it comes to my health.

 

Now that it is safe to say I have Celiac I have some questions and am seeking support.  My questions are what does everyone here do- do you cook only in your own kitchen or do you ever eat out? Do you feel like you get a reaction just from touching flour?  From all I have read you really need to be in a bubble and be crazy careful and I am MORE than willing to jump on the bandwagon and become even more of a food-nazi than I already am!  I just want to know what everyone else is doing, how everyone else is dealing, and get some support- food sensitivities are not new to me, auto-immune diseases however are.  I count myself lucky that I've been in tune with my body enough to have cut out gluten years ago, and that I've been able to finally discover what is going on with my body so I can do something about it.  So yes, I am reading all the forums on here.

 

And fyi, I DO think I need to cut those things out (thanks for assuming I didn't) I just wanted to know what everyone else thinks, do they freak out around bread crumbs and when they see flour on the conveyor belt next to their veggies, etc!  Not here to start an argument about how 'right' I am in all this or to be told that I am wrong- here for SUPPORT!!!!!!!!!!!!!!!!!!!

 

I suggest reading the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

Living a strict gluten free life does not mean living in a bubble. I do not freak out over flour or bread crumbs

(in fact, the only thing I might freak out over is if I saw George Clooney or Andy Garcia sitting next to me in a bar  )

but  I would carefully wash everything to make sure they are rinsed off. Airborne flour--like if you worked in a bakery--would be a problem indeed. 

 

 

 I go out to eat sometimes and I eat at friend's houses.

They took the time to learn about cross contamination so I can dine there safely. It's not rocket science, but it takes some planning

and a lot of common sense. I bring them flexible cutting boards, for example to use for food prep. 

I put many of these tips in the Newbie 101 thread Karen suggested to you.

 

The ONLY times I have been made ill from accidental gluten exposure was in a 99 restaurant and these "organic, G F and vegan" places in major cities like

NYC, Boston and down here in FL.

 

Organic and "all-natural" does not ensure G F status. Not at all.

 

High-end places seem to "get" G F better than chains (with the exception of Bonefish Grill--they rock this G F thing and I eat there safely every time )

 

Small places with limited kitchen space are just accidents waiting to happen..

They simply do not have the space to dedicate. 

 

THIS SHOULD BE STATED LOUDLY TO ALL NEW PEOPLE: 

A restaurant that boasts a "gluten free menu" does not guarantee safety for people with diagnosed celiac disease.

 

Once I see HOW and WHERE the food is being prepped in some kitchens and the surly attitude of the waitstaff regarding gluten free items,

 

I have determined many times that the only safe gluten free thing I could eat in the place....is the menu itself.  

[NoGlutenCooties]

Coconut -

 

I'm new at this too and I understand how intimidating it can be at first.  As far as the gluten-challenge and further tests, that's really up to you as far as how important an "official" diagnosis is.  My mom decided to do it because she had not been gluten-free for very long and she was worried that if something happened and she ended up in the hospital, an official diagnosis might matter.  With an official diagnosis they are less likely to give you medicine with gluten in it, etc.  It's not just some "crazy lady" saying she can't have gluten.  Just one perspective.. again, your choice.  If you have really bad reactions to gluten then it probably wouldn't be worth it.

 

I've decided to only eat out when I absolutely have to - at least for the first six months, so that I can heal and get an accurate reading on my follow-up bloodtest.  In the meantime, I'm sticking to whole foods as like you, I've never been one for processed foods with tons of crap in them and refuse to start eating them just because they're stamped "gluten-free".

 

As for snacks, that will be tough given your other food allergies.  I know Luna makes a really good gluten-free protein bar, but I get the peanut-butter ones and have no idea if they also have a nut-free variety.  You may want to get in the habit of having a small lunchbag with you, even if you have to put a little ice-block in it.

 

The gluten-free lifestyle is a major change for some people but if you take it one thing at a time it becomes second nature.  You'll thank yourself and realize it's all been worth it when you start to feel better.

 

Good luck.

[cyclinglady]

Here's some answers to your questions, but I think you'll find that you'll just had to create your own path to wellness:

 

• Go Picnics are a nice handy lunch to keep on hand when traveling.  
• Carry a little ice chest for cold veggies and fruit.
• Eat potato chips
• Drink soymilk/milk to fill up
• Yogurt
• Cheese if you aren't intolerant to milk
• Nuts if you're not allergic

The list is endless.......just be prepared.  Keep a kit in your car, along with plastic utensils.  You can always eat from a grocery store. 

 

I do eat pre-processed foods.  I try to find certified gluten free, but I'll take name brands and check the ingredients.  There have only been a few times when we've been glutened by a manufacturer.  There is more risk eating in a restaurant for cross contamination.

 

We rarely eat out, but we have a few restaurants that have good gluten-controlled procedures, but they are only as good as the people working that day!   When my intuition tells me something's not right  -- I don't order.  Irishheart is correct about higher ended restaurants, they are better educated (typically paid more) to take care of their customers.  

 

My house is relatively gluten free.  There are two pots, a strainer,  and an old marked wooden spoon for my gluten eating daughter's lunches.  I cook -- she doesn't.  That way I don't worry about a cross contamination mess.  Other gluten foods are pre-packaged for her school lunches.  She eats gluten free once she's home from school.  When we are in our RV, she eats only gluten free.   It's too small of a space for me to worry about it.  

 

I am very careful about cross contamination and have replaced everything that could have residual traces of gluten on it replaced.  At my parent's house, I have a large storage container that holds my strainer, cutting board, etc.   I grab the box if I go to the family's vacation house or when we eat at my brother's house.  

 

Yes, sometimes I do feel stressed about getting glutened, but I'm learning to adapt and mellow out.  

 

It was hard for my extended family to accept even though my husband has been gluten-free for 12 years.      I had a big meltdown a one family party and I think everyone got the message.  My friends have been completely supportive.  If I had any that weren't -- they'd be gone (can't do that with family, though.... )

 

I hope this helps!  Welcome to the forum.

[cyclinglady]

 

I have determined many times that the only safe gluten free thing I could eat in the place....is the menu itself.  

 

Ha!  Not!  Cross contamination is an issue here!    Not just gluten, but you could pick up all kinds of germs!  

[IrishHeart]

Still not getting  my sarcasm?  If I have to 'splain, it ruins my punch line. 

 

Okay...".If the laminated G F menu was wiped off, it would be safer than what comes out of the kitchen."

 

meh...not the same.

[ItchyAbby]

I self-diagnosed myself gluten-sensitive about 5 years ago.  I had horrible symptoms (bloating, nausea, gas, fatigue, migraines etc) and did a ton of research before figuring out it had to be wheat- sure enough, after cutting it out I got better.

 

I never considered Celiac Disease.  I just assumed I was extremely sensitive to gluten (and who isn't these days, wheat is so modified and terrible!) and actively avoided it.  So, while I avoided eating things like bread and pasta, I would occasionally eat soy sauce, or have oats, buy from the bulk bin and I have eaten out almost daily as I travel, am busy, and live in studio where cooking is a pain.  I recently discovered that my entire family on my dad's side has Celiac disease. I was having some symptoms and so I immediately told my doctor and was tested.  The results were positive for carrying the gene (I only did genetic testing since with my symptoms and family history the doctor thought it would be enough to give a pretty accurate diagnosis- I didn't think I could handle eating the gluten required for the other tests).  I know the diagnosis isn't 100% accurate with only the genetic testing, but I accidentally ate gluten a week ago (was an item off a gluten free menu that they did not make correctly and they used wheat crust) and I was so sick I thought I might die (that's the most wheat I've consumed in years).  So- symptoms, genetic test, and the fact that everyone on my dad's side has it seems to be enough for me.... should I eat gluten and get the other tests?  I don't feel that I need to but I suppose maybe some people here will have thoughts on that...

 

I've done a lot of research in the last week a on living with Celiac Disease and it seems that you should never eat out, never eat from the to-go section (Whole Foods hot bar etc), never eat any food that was produced in a facility that also processes wheat, never buy from the bulk section etc...

 

I do not believe in eating processed foods- so pretty much the entire gluten-free section is out for me.   (I find I react even to gluten-free oats and corn as well- cross-reactors) I'm thinking I need to cook all of my meals from scratch in a gluten-free environment- is this what you all do?

 

I spend almost all day in someone else's house and the kitchen is filled with gluten products-there are crumbs everywhere and the kids are always baking (which seems to make me ill, flour in the air?) I also feel ill when I have to cook pasta for the kids or make them sandwiches and touch the bread..I know this is not in my head as I was experiencing this prior to my diagnosis (maybe I have a topical wheat allergy as well).  I'm now frantically washing my hands (because what if I touch my mouth etc!)

 

I'm afraid to even heat up my own food in their pots or oven or cut anything for myself on their cutting boards...

 

Today I was buying veggies at the store for soup and the woman behind me in line plopped down a large bag of flour on the conveyor belt and some flour misted out and now I'm scared to eat my vegetables!!! Arghhh!

 

I find myself not eating because I'm scared to...I seem to react to nearly all the gluten-cross reactors as well so dairy and eggs are out and nuts, grains, beans as well for the most part....sigh.  I just feel like at this rate I am going to lose every bit of weight and muscle on  me and I'm already underweight.

 

Sorry this is all over the place...to narrow it down, a few questions...

 

-What do you do on road trips, or long days where you really don't have the option to carefully prepare your own meals?  Do you rely on certified gluten free packaged snacks in order to have something 'safe' to eat?

-Are there any go-to snacks that are easily portable and healthy that any of you can recommend?

-what do you do when it comes to eating out?

-how careful and strict are you about avoiding any possible source of gluten contamination?

-do you ever feel terrified about food being contaminated? (apparently even gluten-free food likely has some level of gluten)

-how do you deal with people dismissing the seriousness of your disease as if it is a choice or an excuse not to eat!???  (people think I'm anorexic because my diet is so limited and I am thin from not absorbing nutrients- I DO eat -lots of fats like coconut oil and pastured meats, but I just don't eat 'normal' food and being social these days is next to impossible...)

 

I just feel like nothing is safe and the entire world is filled with gluten!!!!

- I'd pack a TON of food if I am going to be away from my house for extended hours. If I travel it will either  be to stay at a place with a kitchen (bringing my own utensils and cutting boards). I could also see going in a Vanagon with a kitchenette, or in a hotel that has a mini fridge and will allow me to use an electric skillet.

- My current favorite snack is a little mason jar (half pint) filled with a mix of sunflower seeds, big coconut flakes, pecans, and dried mulberries. I also like a mix of cashews, coconut flakes and dried cherries. I like the jar because I can just tip it into my mouth when I am hungry, without having to worry if my hands are clean. Other snacks: carrots and celery; precooked bacon strips, jerky or pemmican (not everyone's taste but I love it); easily portable fruits; jars of pureed soups. I don't really like bars or too many sweets for snacking.

- I have only been out to eat twice in the last 6 months (since dx) and those were both 100% gluten free places. I do not see myself being comfortable eating anywhere else, but that may change. A friend recently had her birthday party at a restaurant that was not 100% gluten-free. I wrote the manager an email asking and explaining and I got a very nice note back telling me that while they would try to accommodate me, they could not guarantee my safety. I decided to go and just have a drink but not eat there. I ate beforehand and had one of my little goodie jars in my bag just in case

- I was truly afraid of food for the first month or two. This is saying a lot because I am a born and raised foodie. But food and I needed to break up for a while so we could figure out how to love each other better. I lost weight and just ate purely for nourishment, not for pleasure - very simple meals. I am happy to report that food and I have fallen back in love and it's hotter than ever. I love to cook and the new challenges are only fueling my inspiration it seems.

- I Am Very Strict. Scrubbed kitchen top to bottom. Did two big purges several months apart - anything that I even remotely questioned was tossed. (actually I gave it all to the foodbank but it sounds more dramatic to say "tossed") I do not let any gluten in my house. I am a little extreme about this, but it's worth it - it would just cause me anxiety, so it does not pass my threshold. I research anything before buying, like nuts and flours, to figure out the best course of action. I buy my meats directly from the ranchers whenever possible, so I know that a minimum number of hands have touched it. I grow a fair amount of my own veggies and the rest I get from the farmer's market. I will not buy veggies at one market in town because their bakery is right next to the produce section. There are flour footprints everywhere. (Like I said, I can be a little extreme - I am still fairly new at this)

- People are ignorant. You can choose to educate them if you wish, or just let it slide. My friends and family know how serious this is - they have watched what it does to me. Anybody else? Well, I just have to decide how much I care to talk about it and whether they are receptive or not.

[IrishHeart]

The Abbster is a quick learner. just sayin...

 

I do think you are being a bit worrisome for no good cause about this, though, hon.

I buy produce in the supermarket even though there is an in-store bakery.

No problem. 

Our biggest concern is not the produce. 

 

 

 Itchy Abby: I will not buy veggies at on market in town because their bakery is right next to the produce section. There are flour footprints everywhere. 

[IrishHeart]

In case some of you have not read this link on the Newbie 101 thread, please take a look at realistic ways to prevent cross contamination

 

Open Original Shared Link

[GFinDC]

So what have you got against bubble people anyhow?  The new bubbles these days are very nice.  Come on in, there's room for two of us!   I saw the sun just last week, and heard neighbors outside talking.  Was a bit close, but not too disturbing...   (insane crazed emoticon guy here)

 

You might want to look up celiac support groups in your area.  The CSA and others are  present in many areas.  Some of them have dinners and meetings and share gluten-free food and stuff at times.  They also may have great tips for bubble living in your area.  Did you know windex/ammonia is now frowned upon for bubble cleaning?  A spit shine is preferred by the in crowd.

 

If you do come visit, bring your own bean bag.  No hard chair legs are allowed in my bubble!  Oh, could you bring some pictures of the sun and flowers too?   Creeping back inside now, bye!

 

 

 

 

[IrishHeart]

While I find the CSA distributes some good info and some  (shall we say) erroneous info? (they say alcohol is not gluten-free and check their latest on "OMISSION beer" as being gluten-free)  AND I DO NOT agree...but I digress....

 

 

...I agree with support group as being helpful.

 

I also think THIS support group right here on c.com  is very helpful.

 

And I also think our own "bubble boy" GEE EFF in DEE CEE (as I call him) here is very funny and sweet and offers good advice..

 

By now, Coconuts....you have probably figured out we are a fun bunch and we are here for you.

[cyclinglady]

Still not getting  my sarcasm?  If I have to 'splain, it ruins my punch line. 

 

Okay...".If the laminated G F menu was wiped off, it would be safer than what comes out of the kitchen."

 

meh...not the same.

I get it.  I mean I got it!  

[IrishHeart]

I get it.  I mean I got it!  

 

whew! 

[bartfull]

Hi! Welcome to the forum.

 

I'm one of those who does not eat in restaurants, but that is because I have additional intolerances. It seem you do too, but there is no such thing as "cross-reactivity", no matter what you may have read on the internet. These other intolerances we have are actually something we have probably had all along, but they were masked by the celiac, kind of the same way a sinus allergy would be masked by a head cold. Once the cold gets better you realize that wasn't the ONLY thing causing your sneezing and runny nose.

 

Some folks find that after their gut completely heals they can add a lot of these foods back to their diets. Corn has been my biggest problem, but I eventually got corn STARCH back. I also had a major problem with almonds. I tried some a couple of weeks ago and had a MINOR (very mild) reaction. That gives me hope that eventually I may get them back totally. I had trouble with white potatoes and gave them up. Tried them again a year later and had no reaction. Then I went hog wild and ate potatoes every day. After a while I got joint pain (nightshades can tend to do that), so I gave them up again. But even though I got joint pain, my "normal" bad reaction to potatoes never resurfaced.

 

It can be confusing and frustrating for sure, but if we completely stay away from gluten, I believe there is hope for ALL of us with additional intolerances, that we can get these other foods back - eventually.