How Can We Have A Life?

[lucia]

I think I was glutened on Sunday night. I woke up on Monday with severe stomach cramps, and I've been suffering this week from dizziness, headaches, low mood, inability to concentrate, joint pain, and cold/hot flashes. It's like having the flu. I'm not fit for the world.

Celiac/gluten intolerance has almost completely shut down my life this year. Now I'm finally getting better (through SIBO diet and acupuncture), I've been excited about resuming everything I haven't been able to do. But what will happen if I get glutened? How do people take care of all of their life responsibilities? How do people take care of kids? How do people work?

It's like I can't count on my body anymore in a really basic way.

[sb2178]

1. I made friends with the chef in the cafe where I work for the days where I don't manage to pack food. I also keep safe food in my desk (not in the office kitchen). And I don't eat anything else at work. Ever.

2. Always, always, always wash hands before eating. Soap and hot water, NOT hand sanitizer.

3. Well... take the 5 and under crowd gluten-free if you are quite sensitive. Otherwise, obsessively wash hands and don't let them eat anywhere outside the table/kitchen. Or outside.

4. Switch to less food based socializing in so far as you suggest alternate activities. For example: go on a hike, play frisbee, go see a play/ballet, take a language class, volunteer at a library, etc.

5. Lesson of the week: yeah, just because the soup is safe doesn't mean that someone didn't manage to get bread crumbs in it. or something. Take your own or eat at places where you have developed confidence. Don't cry on the bakery attendant who looks at you blankly when you object to the gluten-free items being on the SAME plate as the gluten items. Not such a good idea. Anyway, that cookie was in a sufficiently flour-containing environment to be not safe...

And, honestly, I'd finagle a desk close to a bathroom in so far as you can for work. Mine is much too far. I'd also work on getting a job somewhere that is friendly to flex time and working from home.

[lucia]

I wonder if my symptoms are going to be more severe since I'm still in recovery? I haven't been glutened for 3 or 4 months now, but before that it was the same thing as this time: so much stomach pain that it's hard to stand to take a shower or to do the dishes. I can't imagine going to work like this. The pain is so bad that it's even hard to sleep, and it wakes me up during the night once I do fall asleep.

[Skylark]

I'm so glad you're feeling better Lucia!

You simply don't take risks with gluten. I carry my food with me pretty much everywhere I go, except to restaurants with a gluten-free menu. If your gluten symptoms are disabling, you might prefer to not eat out at all. It's inconvenient, but you get to the point where throwing a piece of fruit or bag of veggies and some leftovers into your bag on the way out the door if you anticipate going out for long enough to eat is habit.

Lesson of the day: If there are crackers anywhere amongst the snacks your friends brought for a party, do not eat anything anywhere on the table except veggies you rinse first. There WILL be crumbs, inconsiderate people who know you're celiac will dip the damn crackers into the gluten-free dips anyway, and you WILL wake up the next morning feeling like poo. I am going to have to ask my friends to stop bringing anything made of wheat to my home.

[Marilyn R]

I've learned so much from this forum, and one of the best threads I hit was when I searched "I'm ready to give up". I think it will help if you look at that old post, it helped me.

I think this is a horrible disease and it irritates me mentally and physically. But we are in control and we will get better and we are really the lucky ones who know what we have and can deal with it with our diet. I tend to get melodromatic at this point and list all my aunts and cousins who died of this and that autoimmune disease because they were never diagnosed, but I'll spare you.

Go buy yourself a new lunchbox - there's a wonderful one at Wal-Mart in the camping section with a removable, washable insert, outside pockets, expandable top ...it's really cool. It's less than $5. And I invested $15 in a good thermos but maybe you have a microwave at work.

It's hard not to resent the extra work that it takes to make your own food to always take with you, especially when you don't feel like you have even an ounce of energy left in you. I'm happiest when I don't have to deal with figuring out my lunch in the morning because I did it the night before, even if I was P.O. when I was preparing it the night before. You can live a life, and of course, you must...especially if you have little peeps counting on you.

You will have a very good life. You have to become food focused, which stinks, but I look at it at trying to live like my Grandmother lived. Even though she didn't have to work, she didn't have very many conveniences, along with 9 children.

Wish you the best...

[Skylark]

Your lunchbox made me think more of what I do.

I always cook extra food. As I'm cleaning the kitchen, I put a lunch-sized portion of dinner into a Tupperware container in the fridge. If I cooked three or four servings, the other portions go into the freezer. That way, I just have to grab fruit and a container of food on the way out the door. The frozen servings defrost pretty easily in the microwave at work.

We have a decent little kitchen at work with a few dishes and plastic utensils so I can also bring canned gluten-free soups to warm.

I always have some sort of gluten-free snack bar with me too. I don't know whether there are any that are compatible with SIBO. If not, maybe you can carry small baggies of nuts or something. If I'm out of the house for longer than I expect, the snack will keep me going. I can also often find bananas or apples at convenience stores. Sometimes they have string cheese or hard boiled eggs, packages of Planter's peanuts, or other naturally gluten-free food.

[lucia]

You guys are advocating a very defensive position. After this last bout of sickness, I think I need to adapt that too.

I was despairing mostly about getting glutened, since I get so sick. Is getting so sick normal? It seems like other people on the board can get sick and feel miserable but still carry on with their lives.

If I do get sick I'm just going to have to suffer through it (like a flu)?

[missy'smom]

I too easily look at myself as being sick and weak and can't count on my body, even after 4 years gluten-free, now that I have multiple food allergies, diabetes and am quite thin. But that train of thought leads to nowhere. When I catch myself going there I try to be proactive and do things that make me feel strong and healthy. Set goals that will lead me in that direction, whether physically or mentally. Sometimes just sitting in the sun 15 min a day and just being still and soaking it up makes a person feel stronger. Sometimes I work on my medical checklist. That makes me feel like I'm making progress, moving forward, taking care of myself. This year I started exercizing-very, very baby steps(just walking) but a comitted to something with a tangible goal. I am going to join a diabetes walk-just one mile but for me, I have to train for it. But I know I will feel so good when I do it and feel like I've made so much progress and can look back and remember it as a milestone. When we are in the trenches everyday sometimes it's hard for us to see our progress or to feel like we can make any.

I just try to take it one day at a time. It's been a process to learn how to do that! I've learned to cancel/re-schedule appointments and make no explanations or appologies other than very basic ones and I don't always share the real reason, I just say firmly but politely, I'm not able to...that's not going to work out..., and not feel a bit bad about it. I don't make changes only when I get sick or already reached my limit but I've taken it a step further and really been careful when scheduling in the first place to guard my time and energy and at some point if it looks like it's going to be too much, then I go ahead and cancel/rearrange or don't attend before I end up over the edge. That's really made a difference. I call it advocating for myself and taking care of myself.

When you are in the middle of the aftermath of a glutening, you just can't let you mind go in that negative direction. I would just tell myself that now was not the time to be making any decisions or thinking about things too much. When I'm not feeling well for whatever reason, I tell myself, this is my time to take care of me. So many people in general don't take the time to take care of themselves and I know moms often feel that they just can't.

[tehjrow]

I don't go defensive, I go offensive. I've been sick my entire life, never even knew what it was like to be "normal". I've been gluten free about 2 months now and just beginning to feel better. If someone threatens that, I threaten them right back.

[Skylark]

You guys are advocating a very defensive position. After this last bout of sickness, I think I need to adapt that too.

I was despairing mostly about getting glutened, since I get so sick. Is getting so sick normal? It seems like other people on the board can get sick and feel miserable but still carry on with their lives.

If I do get sick I'm just going to have to suffer through it (like a flu)?

People have different levels of severity of gluten symptoms. It sounds like your reactions are quite severe so yes, you do need to take a fairly defensive stance to keep functioning.

If I get into enough gluten, it is very much like a GI virus for me. I take Immodium as soon as I figure out what happened, and by the second dose I am usually out of the bathroom. Then it's rice, broth, and Pepto Bismol for a couple days. Sometimes I have to take a sick day. Smaller amounts are unpleasant but don't make me too ill to function. The Immodium and Pepto are pretty much how I keep functioning. They really make a difference in the way I feel.

By the way, I'm soooo glad to hear that you're feeling well enough to be thinking about getting on with life. (((hug)))

[rdunbar]

I used to be so careless about cc, eating out all the time. I went through @3 years thinking wheat was a problem, not knowing about celiac or gluten. My dermatitas herpetiformis never got better, my mood problems may have even gotten worse. I think maybe I was becoming more sensative to gluten . Boy, I wish I could have those 3 years back with what I know now.

Now I try to be super vigilent about avoiding gluten like it's radioactive or something

I prepare all my meals at home. I have a little cooler and take food with me whenever I am going to be away for any length of time

at first it seems like a huge inconvienience, but you get used to it, and after a while it seems like it's no problem

getting glutened on a regular basis is the real problem. I think acceptance is the real key, once you really understand and accept your situation, it's easy

sometimes I feel like I'm being too extreme now, but then I realize that there is no such thing when it comes to being safe. It's a basic risk/ reward calculation ; if the risk is my well being and the reward is some temporary distraction or pleasure, then it's a no brainer decision

[ravenwoodglass]

You guys are advocating a very defensive position. After this last bout of sickness, I think I need to adapt that too.

I was despairing mostly about getting glutened, since I get so sick. Is getting so sick normal? It seems like other people on the board can get sick and feel miserable but still carry on with their lives.

If I do get sick I'm just going to have to suffer through it (like a flu)?

I am like you when I get glutened my life stops for a few days. For years I couldn't imagine being able to do anything because my reactions are so very severe. When I get glutened there is no way I can do anything as the pain, D and the neuro effects are just too much to even function. As time has gone by and I started doing a lot of the stuff that the others have advised my glutening are now happening very rarely. It is a pain to have to be so careful and it does take some getting used to but you will get the hang of it.

[lucia]

As time has gone by and I started doing a lot of the stuff that the others have advised my glutening are now happening very rarely. It is a pain to have to be so careful and it does take some getting used to but you will get the hang of it.

I wish my symptoms weren't so severe. I never could have envisioned this so many months ago when I first realized that gluten was making me sick. : (

Ravenwoodglass, your story is inspirational. Yes, I am going to need to implement those safety measures. It can be done, just not so easily. I think it's pushed me into mourning, realizing just how much I'll be giving up (food has always been such an important part of my daily life).

But today I had potatos for the first time in a month (since starting my SIBO diet), and they were so good! Whole foods, simply spiced - baby potatos drizzled with olive oil and sprinkled with thyme, in this case - are beginning to taste more profound to me.

[ravenwoodglass]

I wish my symptoms weren't so severe. I never could have envisioned this so many months ago when I first realized that gluten was making me sick. : (

Ravenwoodglass, your story is inspirational. Yes, I am going to need to implement those safety measures. It can be done, just not so easily. I think it's pushed me into mourning, realizing just how much I'll be giving up (food has always been such an important part of my daily life).

But today I had potatos for the first time in a month (since starting my SIBO diet), and they were so good! Whole foods, simply spiced - baby potatos drizzled with olive oil and sprinkled with thyme, in this case - are beginning to taste more profound to me.

Keep in mind that gluten can have some nasty effects on our mood. I get frankly suicidal for a couple of days when I get glutened and it takes a while to get back to myself moodwise. You may be the same and for me it helps if I just tell myself it is the gluten making me feel this way, then I hide for a couple of days and try to treat myself to anything that perks my spirits. There is a bit of grief involved also. It really is life changing to realize what a toxin gluten is to us. Things will get better.

Those baby potatos sound great, I think I'll do the same with my baked chicken tonight. Sounds better than the white rice I was going to do. Thanks for the inspritation.

[Jestgar]

It's hard not to resent the extra work that it takes to make your own food to always take with you, especially when you don't feel like you have even an ounce of energy left in you.

yah, this still p!sses me off that I require all this extra work to stay happy and healthy. But I would never consider not doing it.

[Marilyn R]

Ravenwood, I read your posts (old and new) and appreciate what you have to say everytime. You really help people, thank you for that.

[Aphreal]

Living a different life isn't the same as not having one. I had to back up and start over. I rarely eat anything other than what I make myself. I trust nothing. I read everything.

It kinds stinks sometimes because at each party we attend, I bring my own salad, my own fruit..even my own silverware. But you know.... Let them eat their gluten laden fat filled greasy foods. The more weight I loose, the less awkward I feel about bringing my own food. My tea has no calories, Their alcohol has many calories. I have learned to be OK with it.

You live in a food bubble for your own sake. The better I feel the less I worry about bringing food everywhere and I do bring food everywhere. I was even called on it during my sons football game. *no outside food mam*. "well" I said, "Guarantee me you have gluten free options over in your grease pit consession stand and I will consider buying it.' He left me alone to eat my watermelon.

Hang in there. we will find our groove. Until then, it's trial and error. At first I went nuts with gluten-free carb items. BIG MISTAKE. I hardly buy anything specifically gluten-free anymore. I stick to naturally gluten-free items. I will go to american cookie company for my chewy chocolate supreme. That is my treat.

Sooooo I say.... have things on hand to go where ever you go. wash your hands if touching bread sets off your allergy, and do the best you can until we learn exactly what we can do and what we cant.

hang in there!!

[T.H.]

Just giving you a sympathetic virtual hug! I was really shocked when I had my first gluten reaction after a few months of totally gluten free. Mine lasted for quite some time too, with vertigo so bad the first while that I couldn't even walk. :-(

My father can get accidentally glutened and he gets a mild crampy stomach and the runs for a couple days, and then that's about it. He regularly just tries something with the thought that if it has gluten, no big deal. When I was first diagnosed, I thought that would be me, too.

After the nasty reaction, I was really disheartened. Reading your comment on this was like remembering what went through my head. Since then, I've done what a lot of people here discussed: very defensive eating. It's gotten better, slowly, but definitely better. Very different way for me to think and act, but we've tried to just enjoy it. Going out to state parks and picnicking, eating outside, etc...

Tried to start a garden, even, so I could have food I knew was safe...yeah, not so good at that, LOL. And exactly as you've said: the less foods I eat, the more I'm noticing the flavors of the foods I DO eat. So glad you are enjoying the new foods you've been having, too!

[precious831]

You guys are advocating a very defensive position. After this last bout of sickness, I think I need to adapt that too.

I was despairing mostly about getting glutened, since I get so sick. Is getting so sick normal? It seems like other people on the board can get sick and feel miserable but still carry on with their lives.

If I do get sick I'm just going to have to suffer through it (like a flu)?

Sorry you're sick, hope you feel better soon. It feels flu-like too for me when I get glutened. I have a hard time getting out of bed, my joints all swell up, I get itchy rashes, headaches, brain fog, all sorts of pain in my body, plus the GI symptoms. I am terrified to be glutened and to eat anything with dairy. Soy too but the dairy reaction was pretty severe the last time.

I have not gone out to eat in about 2 months, it's pretty scary out there. I can't take any chances for me and my daughter. I make all our food from scratch. I have an extra freezer and stock up on food for later. I make large batches and freeze and take food with me for my DD and I wherever we go. I have 2 nice thermos and a big lunchbox, like PP mentioned, with a washable plastic liner.

HTH. I know it's hard. We've all been there. Take care. You know before I was diagnosed, I had a huge relapse of fibromyalgia a few years ago. I was in a lot of pain to the point I had to quit working, I was practically bedridden for 2 months. I attribute that to gluten. Since being gluten-free(and grain-free) I've been doing so much better.

[gf-soph]

You really do have to adjust your expectations. And there's nothing wrong with grieving about what you have lost - options, convenience, enjoyment of some foods, or even missing out on social occasions. Not everyone will feel that way, but I think that plenty of people here do - I know I did! I think that you need to acknowledge and allow these feelings before you can let them go. That's not always easy! It took a while, I knew if I was coping by whether I kept making plans, and actually took the food I needed. If either one wasn't happening, I knew I had to work harder and work out what was holding me back. It was often frustration at lack of convenience, or feeling that it wasn't fair. Either way, knowing what was behind it helped me to work through it, and diffuse some of the emotion around eating.

I know how limiting it can be, but almost 2 years gluten-free there are so many things I no longer miss that used to bug me terribly. I think after an adjustment time you get used to your new situation, and you stop feeling the limitations so keenly. I am 3 months into an elimination diet, and I have had to make everything I eat in that time. It's been worth it as I feel so much better. I also consider myself lucky as by caching my gluten problems now I have avoided the lifetime of problems my grandmother had had, as well as dodging a bullet by finding a precancerous polyp - that certainly put things into perspective!

There's no doubt that bad gluten reactions are awful, and will naturally make you pretty risk averse. But the good news is that the gluten free market is growing all the time, so hopefully you will be able to find some places to eat that are safe. You can ask on the board for recommendations for places that can cater to you properly. But even if this doesn't happen, things will get better with time, and healing.

[sandsurfgirl]

Grieve what you have lost, and then look your fear in the eye and refuse it! You must refuse to live in fear of getting glutened.

Look at it this way. Now that you are gluten free, you are healthy and feeling good most of the time. So if you get glutened by accident it will be a small incident, whereas before you were sick all the time and only feeling healthy once in awhile if at all. Your circumstances have been inverted.

I eat out a lot. I'd say I eat out 3 to 7 times per week and I've only been glutened twice. That's pretty great odds. Only one of the glutenings was severe. They other two were minor and only lasted a few hours.

There are so many restaurants with gluten free menus now. I always ask to speak to the manager or chef and I tell them I'm very sensitive and get reactions to things as small as crumbs. I am VERY sweet and polite and I ask them to please be extra careful with my food even if they have a gluten free menu. I also apologize for the extra time and effort it takes to serve me. If you've ever worked in a restaurant you'll know that dealing with a food allergy is a HUGE pain in the butt. It interrupts their work flow and can really throw things off if it's super busy.

You have to accept the fact that you will get glutened once in awhile and then move on with you life. As you get better and better at this your glutenings will be rare.

Also, when I pack my own food, I don't bother trying to create meals, like a cooked dish or a nicely tossed salad. I don't have time for that. I just grab foods, like some cut up carrots, an apple, some gluten free crackers or pretzels, a baggie of nuts and some lunch meat. It's balanced, easy to eat on the go and takes no time to pack. Baked Kettle Chips are gluten free and really easy to grab and go for a carb snack. I dole out nuts that I buy into those little snack size ziplocs so I can just grab a baggie of nuts and an apple on my way out.

[sandsurfgirl]

Wanted to add, you'll be surprised at how many people go way above and beyond for you if you approach them nicely enough. I was at a BBQ place that looked like it would be a gluten nightmare. Wolicki from this board and I went out for drinks. Well I got really hungry and she looked at me like I was crazy. I asked for the chef and explained my situation.

I asked him to make me plain salmon and clean the grill. HE came up with the idea to pan sear it in a clean pan to make certain there was no chance of CC for me. I got steamed rice and steamed green beans with it and it was amazing.