How Do You Work With This?

[SoLacey]

For those of you who work with this, how do you do it??  I was diagnosed 6 months ago and while it has gotten easier it's still not easy. 

 

Tuesday night I ate something, I suspect the scoop of gluten free gelato I ate, wasn't.  I couldn't get out of bed until 6:00PM on Wednesday, and it was noon today.  When I get glutened I'm just flattened, I can't do anything else.  Sometimes for a day, sometimes for as long as 5 days.  I'm sure I don't have to explain that to anyone here.    I had to call into work the last two days.  I'm trying to work from home now but my head is in a fog. 

 

I have neurological problems with this and sometimes I have a hard time focusing or just can't seem to get myself to care about work.  I keep wondering if I should look into my disability benefits or consider a career change.  Something less performance based with more flexible hours maybe.  It's weird to even think about doing that, I've always loved working and have worked a lot of long hard hours.  I just don't feel like I have it in me anymore. I've wondered about taking short term disability too, maybe just for a few weeks to try and reset.  I don't know.  Up until 2 months ago I wasn't sure I could maintain my job at all, I was failing miserably.  I don't know if it will still get better from here or if this is the best it's going to get.

 

I'm a divorced Mom so I don't have the option to stay home, I have to work.  I work 8:00 - 5:00 and some mornings just waking up is a big accomplishment.  It has been a struggle to get there by 8:00 most days.  That has improved lately as my glutenings are getting further apart. 

 

I get 15 days of vacation each year and I'm hording them because I'm so afraid I'm going to need them for sick days ( I'll have to use 2 this week ).  What I really need is to take an actual vacation and to go to the beach.  Right now I'm trying to work and all I really want to do is go crawl back into bed and sleep this off. 

 

Help, wondering how others cope.   

[Adalaide]

If you have vacation time it sounds like you've been at your job a year or longer? Are you in the US? If so, see if you can do the paperwork for intermittent FMLA leave. This will give you the flexibility you need to take sudden time off if you get CC'd while you're still new to this and getting the hang of things and getting a handle on your health. It will also allow you to have the same flexibility forever for the occasional accident that happens down the road without eating up your vacation time.

 

I don't work (totally unrelated, and even more stupid disease ) but am familiar with this due to having to use it in the past as well as an aunt using it because she has lupus which causes seizures. I do know that when I get glutened I sleep for daaaaaaays. And I'm also about as sharp as a marble too, I wouldn't trust me to color inside the lines with crayons better than a 3 year old for a week. I sure as heck wouldn't let me do any heavy lifting like something with numbers. The intermittent FMLA may be just the thing you need. I know that even if my health were otherwise good enough to handle work I would want to have it in place just to protect my job in case I needed a week off from an accidental glutening.

 

And remember, if you're eating out and getting ice cream or gelato and they're dipping it... clean scoop, new container or not at all if they have cones there. I'm too paranoid to go to places like cold stone and such because I'm sure I'll get glutened from cone fragments or trace CC. Besides, there are far too many soft serve places with amazing options that can treat us right.

[bartfull]

If the gelato was from an ice cream shop odds are there were some ice cream cone crumbs in it. I used to work in ice cream shops and there were always bits of cone and crumbs falling into the tubs of ice cream. It's best to stick to ice cream at home.

 

I'm sorry you're feeling so lousy. I run my own business so I HAVE to be here every day. I avoid glutening by eating ONLY things I have cooked myself. I know it's a pain, especially since I'm a lousy cook, but it keeps me healthy.

[NatureChick]

Bummer! My heart really goes out to you that you are in the middle of a reaction. 

The first six months of being gluten-free are the toughest so I believe that you will get better at it still. Unfortunately, some lessons can't be learned through research alone and still happen the hard way.

There are plenty of people here on the celiac forum that take risks that I wouldn't dream of taking, so don't trust that what works for others who have celiac will work for you. For now, I'd categorize yourself as super-sensitive and make decisions accordingly. Though it may seem impossible to avoid cross contamination or accidental glutenings, it can be done. You just end up making a lot of your food from scratch and getting super selective about which brands and products within brands are safe. For instance most Glutino products are made in dedicated facilities, but their crackers are made in a shared facility, so don't even try them. Paying attention to discussions here on the forum is a great way to learn tidbits like that without having to go through the reactions yourself.

You do have to be more selective about what risks you choose to take and forego temptations the rest of the time. For you, it looks as if your day to try new foods is going to be Fridays only. But every time you take a risk, you have to ask yourself if possibly having to give up a weekend is really worth it. 99% of the time, it won't be.

On a positive note, I can tell you that after I managed to stay 100% gluten free for several months without any accidental exposures, my reaction to trace amounts did seem to die down quite a bit. (But the one time I accidentally ate a full dose of gluten, my reaction was different and worse than anything I had experienced before going gluten-free.)

If it makes you feel better, I was still making mistakes on a regular basis up until the fifth or sixth month, despite the fact that I work from home and have a gluten-free kitchen. I might also recommend setting aside specific time for grocery shopping, and not taking the kids with you so that you can focus and not make any mistakes when shopping.

And in your case, I think being a single parent is a good thing because you can make your home a gluten free zone rather than have to share space with another adult who may not be as careful as you need to be.

[kareng]

Bummer! My heart really goes out to you that you are in the middle of a reaction. 

The first six months of being gluten-free are the toughest so I believe that you will get better at it still. Unfortunately, some lessons can't be learned through research alone and still happen the hard way.

There are plenty of people here on the celiac forum that take risks that I wouldn't dream of taking, so don't trust that what works for others who have celiac will work for you. For now, I'd categorize yourself as super-sensitive and make decisions accordingly. Though it may seem impossible to avoid cross contamination or accidental glutenings, it can be done. You just end up making a lot of your food from scratch and getting super selective about which brands and products within brands are safe. For instance most Glutino products are made in dedicated facilities, but their crackers are made in a shared facility, so don't even try them. Paying attention to discussions here on the forum is a great way to learn tidbits like that without having to go through the reactions yourself.

You do have to be more selective about what risks you choose to take and forego temptations the rest of the time. For you, it looks as if your day to try new foods is going to be Fridays only. But every time you take a risk, you have to ask yourself if possibly having to give up a weekend is really worth it. 99% of the time, it won't be.

On a positive note, I can tell you that after I managed to stay 100% gluten free for several months without any accidental exposures, my reaction to trace amounts did seem to die down quite a bit. (But the one time I accidentally ate a full dose of gluten, my reaction was different and worse than anything I had experienced before going gluten-free.)

If it makes you feel better, I was still making mistakes on a regular basis up until the fifth or sixth month, despite the fact that I work from home and have a gluten-free kitchen. I might also recommend setting aside specific time for grocery shopping, and not taking the kids with you so that you can focus and not make any mistakes when shopping.

And in your case, I think being a single parent is a good thing because you can make your home a gluten free zone rather than have to share space with another adult who may not be as careful as you need to be.

Glutino does test to less than 10 ppm making the cracker safe for almost all Celiacs. I use Glutino crackers and other products with no issues.

[ravenwoodglass]

For instance most Glutino products are made in dedicated facilities, but their crackers are made in a shared facility, so don't even try them.

 

When I first went gluten free I thought there were issues with Glutino crackers also. However it turned out that I was intolerant to one of the ingredients. Perhaps you have an additional intolerance?  I trust this companies products and I am very sensitive.

 

OP

It will get easier. I know that doesn't help right now but if you may want to consider eating only unprocessed foods you prepare yourself. Do avoid eating in restaurants. Maybe eat before you go so you can still socialize but safely. You have gotten some other good advice about checking into FLMA.

I hope things improve for you soon.  

[Gemini]

Bummer! My heart really goes out to you that you are in the middle of a reaction. 

There are plenty of people here on the celiac forum that take risks that I wouldn't dream of taking, so don't trust that what works for others who have celiac will work for you. For now, I'd categorize yourself as super-sensitive and make decisions accordingly. Though it may seem impossible to avoid cross contamination or accidental glutenings, it can be done. You just end up making a lot of your food from scratch and getting super selective about which brands and products within brands are safe. For instance most Glutino products are made in dedicated facilities, but their crackers are made in a shared facility, so don't even try them. Paying attention to discussions here on the forum is a great way to learn tidbits like that without having to go through the reactions yourself.

You do have to be more selective about what risks you choose to take and forego temptations the rest of the time. For you, it looks as if your day to try new foods is going to be Fridays only. But every time you take a risk, you have to ask yourself if possibly having to give up a weekend is really worth it. 99% of the time, it won't be.

On a positive note, I can tell you that after I managed to stay 100% gluten free for several months without any accidental exposures, my reaction to trace amounts did seem to die down quite a bit. (But the one time I accidentally ate a full dose of gluten, my reaction was different and worse than anything I had experienced before going gluten-free.)

If it makes you feel better, I was still making mistakes on a regular basis up until the fifth or sixth month, despite the fact that I work from home and have a gluten-free kitchen. I might also recommend setting aside specific time for grocery shopping, and not taking the kids with you so that you can focus and not make any mistakes when shopping.

And in your case, I think being a single parent is a good thing because you can make your home a gluten free zone rather than have to share space with another adult who may not be as careful as you need to be.

The OP is not super sensitive so let's use some common sense. She is 6 months into the diet and still has a way to go with healing so the necessary thing to do is cook all your own food for awhile because otherwise, you will slip up and make yourself sick. That is normal for everyone and has nothing to do with sensitivity. At 6 months, there should not be continued hits and it will slow down healing. As boring as it sounds, no eating out and especially no risks like ice cream or any fast food. In fact, giving up fast food completely forever will cut out one of the biggest sources of being glutened.

Glutino products are safe. They are a solid brand. I am very sensitive to tiny amounts of gluten and have tried many of their products, including crackers, with no problems. I have never heard anyone complain about them. Let's not diss a reputable company.

To the OP......maybe you have an issue with dairy? That is common with us (me included) and can give symptoms identical to a gluten hit. I still cannot eat ice cream or gelato unless I stop after a couple of bites.

That's my limit!

[CajunChic]

I still cannot eat ice cream or gelato unless I stop after a couple of bites.

That's my limit!

This helped me tremendously in the beginning!! I only paid attention to gluten. I never thought it could be more. Dairy and corn mimic gluten symptoms for me. I've found I can tolerate only a few bites, but that's it.

Try a food journal to look for other possible intolerances or sensitivities. I understand working through glutenings, as an elementary teacher, it gets rough! You'll experience less glutenings after learning more. I think we all "rough it" in the beginning. I'm still learning 11 months later : /

Prayers for your healing!

[SoLacey]

Thank you everyone!  Adelaide, the FMLA sounds like it may be of some help.  I feel bad taking off work and am going to quickly run out of sick days.  . I will talk to my HR director to see what he thinks. 

 

I do believe I am super sensitive and I definitely DO react to Glutino products.  I cut out Glutino products months ago.  The only item they make that I will eat is the egg muffins, they are delicious and I've never reacted to those.  I've reacted to every other thing I've tried from them.  I checked and the egg muffins are made in a dedicated gluten free facility.  I've cut out most things in box.  I do eat Van's products because they are certified and have never had an issue with any of them.

 

Initially, I thought I may have been reacting to other foods but I've pretty much ruled that out, I think I'm just reacting to trace amounts of gluten.  I do not do well with things that aren't either certified gluten free or at least made in a dedicated gluten free facility.  As long as I stick to foods that are certified gluten free I do ok, it seems like every time I take a chance on something that is just gluten free I get sick.

 

Talenti Gelato was what I ate on Tuesday.  I had tried it before and thought I did ok with it but now looking back I remember reacting on a couple of those nights and thinking it was something else.  It is supposed to be gluten and dairy free.  I did notice on their website that they have a couple of recalls out now for items that were labeled gluten free but weren't.  The two flavors I ate weren't on that list though.  Either way, I will not eat that again.  I'm pretty sure that's the very last time I try anything that isn't certified gluten free.  I've gotten sick from gluten free foods way too many times.   

 

I am also lactose intolerant and my Dr and allergist have both suggested they think I'm carb intolerant.  I don't eat dairy at all and try to minimize carbs as much as I can. 

[kareng]

Talenti Gelato was what I ate on Tuesday. I had tried it before and thought I did ok with it but now looking back I remember reacting on a couple of those nights and thinking it was something else. It is supposed to be gluten and dairy free.

I I don't eat dairy at all and try to minimize carbs as much as I can.

Gelato is NEVER dairy free. It is always a milk product. The first ingredient on the Talenti gelato I have is " milk". If you have a problem with dairy, and the gelato bothers you, please don't say you were " glutened".

The thing is - if you feel bad, it's not always gluten. In this case, you seem to know you have a lactose intolerance, but you ate ice cream anyway. That's not a gluten issue, its a dairy issue. Now people will read this post and think there is gluten in a perfectly good product. That's just really ..... Disappointing....

[Adalaide]

Lots of us eat Talenti and don't have issues, and some that enjoy it (even regularly) are quite sensitive to trace CC. The issue that they had with labeling was similar to the one that a chip company had recently also (Lays I think?) where it mistakenly said gluten free but had an appropriate ingredient list. It simply reinforces the habit, never never never eat something without reading the label. Every label, every time. I don't look for a gluten-free stamp, I look for an ingredient list and if I don't see one, it doesn't go in me. Still, each of us should eat only what we are comfortable eating. Some people like sticking to certified products.

 

I just want to clarify, you say you had gelato. Do you mean you had a sorbeto? Because if you mistakenly brought home a gelato you could be incredibly sick from dairy. Now that you're gluten free, you may find that lactose will cause the same symptoms that gluten does. My lactose intolerant daughter has symptoms very similar to me being glutened if she has milk products. A lot of Glutino products have milk in them, which again could cause a reaction having nothing to do with gluten.

 

Vans puts oats in... everything? They use gluten free oats, which is fine, if you can do oats. It's possible that you don't tolerate them and they're part of the problem. It is suggested not to have oats of any sort of some length of time after your diagnosis and beginning the gluten-free diet before trying them. 6 months? a year? I forget now but I'm sure someone else knows.

 

I'm not arguing, just throwing out ideas to help you narrow things down so you can feel better.

[LauraTX]

What flavor of Talenti Gelato did you eat?  They only have a few that are basically fruit sorbettos that don't contain dairy.  Also, many glutino products have dairy in them.  Before you look into anything like the carb issue, you may want to eliminate oats for a time as Adalaide said, since some Celiacs cannot handle them, even after healing.  Also, be very careful and picky about trace amounts of dairy in products you eat.  A good company for dairy free frozen desserts is the SO Delicious brand which makes coconut milk ice cream.  

 

But do remember that even though us Celiacs have bona fide issues with gluten, not all our issues are caused by it.  It really sounds like you have some other intolerance that has yet to be treated through diet.

[kareng]

I second the So Delicious brand of coconut " ice cream". A few flavors aren't gluten-free, so read the labels. They have a gluten-free cookie dough! They do taste a bit coconutty so my kids didn't like them.

[SoLacey]

Gelato is NEVER dairy free. It is always a milk product. The first ingredient on the Talenti gelato I have is " milk". If you have a problem with dairy, and the gelato bothers you, please don't say you were " glutened".

The thing is - if you feel bad, it's not always gluten. In this case, you seem to know you have a lactose intolerance, but you ate ice cream anyway. That's not a gluten issue, its a dairy issue. Now people will read this post and think there is gluten in a perfectly good product. That's just really ..... Disappointing....

 

Adelaide is right, the one I ate was Sorbetto.  I didn't realize they had both options, only that the one I ate was gluten and dairy free.  I had the raspberry.  I don't eat ice cream.  If I do eat dairy the reactions I have are VERY different to gluten and to lactose, I would think it would be difficult to confuse the two for me anyway.  I didn't have ANY dairy in anything on that day.  I do keep a food diary. 

 

I don't know for sure if it was something else I was reacting to....maybe the bowl wasn't clean enough?  I don't know.  It's frustrating.  All I know is that all I ate that day was fresh meat and vegetables and the Talenti was the only thing I ate out of a package.  I felt fine all day but within 15 minutes of eating that, I was flattened.  The last time I ate it, I got sick too.  That time I had it in a gluten free waffle cone, I thought maybe the cone was the problem.  I started searching after I ate it and it seems most people think it's safe.  I got very sick after eating Sweet Baby Ray's BBQ sauce and when I did some searching they said it was made on shared lines.  I also got very sick after eating Ore Ida potatoes and again those said they are made on shared lines.  I haven't been able to find anything like that on the Talenti but I also couldn't find anything that suggested they were made in a dedicated gluten free facility so I wondered if the batch I had was subject to cross contamination?? 

 

Am I reacting to other foods?  I don't know.    I don't know for sure how to figure it out.  I've been keeping a food diary and I kind of ruled out that possibility because I don't seem to react to anything eaten in pure form or that is certified gluten free.  For instance, I thought corn might be an issue because I kept reacting to gluten free tortilla chips, cereals etc.  Then I tried certified gluten free corn chips and cereals and didn't react, I can eat frozen corn or corn on the cob just fine. I went to see a nutritionist to see why I was still getting sick after going gluten free and she said she thought I was still getting glutened from "gluten free foods" and restricted me to only certified gluten free foods or those made in a dedicated gluten free facility.  It seems like every time I try to eat something that isn't one of the two I get sick. 

[SoLacey]

I second the So Delicious brand of coconut " ice cream". A few flavors aren't gluten-free, so read the labels. They have a gluten-free cookie dough! They do taste a bit coconutty so my kids didn't like them.

 

Thanks kareng, I do like those too!  I was surprised to find that the cookie dough was gluten free.  I like to mix in some K-Toos certified gluten free cookies to make my own cookie ice cream too. 

[LauraTX]

Thanks kareng, I do like those too!  I was surprised to find that the cookie dough was gluten free.  I like to mix in some K-Toos certified gluten free cookies to make my own cookie ice cream too. 

 

I just eat the crap out of the cookie dough when I make cookies.  My Mother in law pitches a fit when she sees me do that!  LOL

[Adalaide]

I just eat the crap out of the cookie dough when I make cookies.  My Mother in law pitches a fit when she sees me do that!  LOL

 

"blah blah blah... eggs... not safe... gonna die...." I hear it too. Been doing this since I was 1 and I ain't dead yet. It's quality control.

[SoLacey]

Lol!! I always say if they didn't intend for me to eat the cookie dough, they wouldn't make it!!

[Gemini]

I do believe I am super sensitive and I definitely DO react to Glutino products.  I cut out Glutino products months ago.  The only item they make that I will eat is the egg muffins, they are delicious and I've never reacted to those.  I've reacted to every other thing I've tried from them.  I checked and the egg muffins are made in a dedicated gluten free facility.  I've cut out most things in box.  I do eat Van's products because they are certified and have never had an issue with any of them.

 

Initially, I thought I may have been reacting to other foods but I've pretty much ruled that out, I think I'm just reacting to trace amounts of gluten.  I do not do well with things that aren't either certified gluten free or at least made in a dedicated gluten free facility.  As long as I stick to foods that are certified gluten free I do ok, it seems like every time I take a chance on something that is just gluten free I get sick.

Glutino's products are all made in dedicated gluten-free facilities. They are safe.  You have only been gluten-free for 6 months, which is only the very beginning of healing.  Many people react to gluten-free products and it isn't because of gluten. Your gut is far from healed yet so this is going to happen and if you have a problem with dairy also, expect to react to foods for many different reasons that have nothing to do with gluten.