Having Mixed Emotions

[Live2BWell]

I've was diagnosed less than a month ago, and I have been Gluten Free since. While I am feeling significantly better, I am also struggling to cope. For those of you seasoned gluten-free'ers, can you share your early coping experiences?

Like I said, I am feeling MUCH better, and I AM optimistic, I'm just overwhelmed

[ShayFL]

I coped by buying a bunch of gluten-free cookbooks and started experimenting in the kitchen. I also kept myself active to keep my mind off the things that I couldnt have. I found I loved gluten-free foods.....it didnt take me long to forget about bread. I dont even eat ANY grains anymore and I feel great and not deprived at all. Hang in there!

[ohsotired]

Jess,

While I'm not a 'seasoned gluten free-er' I just want you to know you are not alone.

I told you about my emotional breakdown over the weekend right?

For those that weren't privvy to the PM I sent Jess.......

We were invited to the in-laws house for dinner on Sunday. I felt confident I could handle it. As the week progressed, I worried and worried and worried......what if the BBQ sauce has gluten in it? What if they made brownies? The whole time knowing that they knew about my dx.

Sunday morning arrives, and I'm cranky, overwhelmed, starving (hadn't been feeding myself very well during the week). Sunday mid-afternoon, I lost it. I started crying uncontrollably and shut myself in the bathroom. Know what sparked the crying jag?

Bagel crumbs on the kitchen counter.

I'm laughing about it now, but Sunday, it was the end of the world for me.

I too am still struggling with menus, shopping and juggling my more than full time job and mommy duties.

It's getting a little easier (won't say a LOT, 'cause we ain't there yet).

Yesterday I was starving, and SO tempted to 'cheat' - after all there were yummy looking pound cakes, bagels, muffins and croissants right there in the pastry case at work. I had to walk away. I just said to my co-workers, I need to take a five minute break. And walked away.

And now, top all this off with the fact that I suspect that I'm getting glutened by my ibuprofen.

So yeah, it's a struggle.

I know you are super busy too, but if you need to chat, txt or call me.

(((HUGS)))

[ryebaby0]

I am not the celiac -- my husband and son are -- but I can tell you with certainty that you need to be gentle with yourself early on. It's grief that you feel -- grief for the food you can't just eat mindlessly, the dinners that will never be as simple, the eating out that will be calculated, the stupid well-meaning comments, the explaining and explaining ---- and it's okay to grieve. It will get easier.

In the meantime, go ahead and cry (I cried often, in the grocery store!). When you feel there are things you simply cannot live without, write them down. On a good day, research that food and find a gluten free tasty version. Give yourself permission to buy expensive gluten-free things and then throw them away if you don't like them. Try every gluten-free bread until there's one you like. Buy fancy cooking utensils, a good gluten-free cookbook (or read the recipes here) and a spiffy apron. Get gorgeous plates.

Remember that -- no matter how hard it is to hear -- there are people who have lost their children, parents, spouses to incurable fatal diseases. They would give anything -- anything -- to have to worry about those people's diets. Not to say that celiac is fun, especially not the first 6 or 7 months, I would never say that. But you will be able to get past this, and to a happier place. Honest.

joanna

[curlyfries]

Like I said, I am feeling MUCH better, and I AM optimistic, I'm just overwhelmed

Sounds like you've been reading a *quit yer whinin'* thread!

I must admit, I got moody quite a bit. I found a snack that I really enjoyed and would treat myself when I was feeling down. For me, it was gluten-free chocolate, chocolate chip cookies dipped in peanut butter.....yummmm. Before gluten-free, I could snarf down cookies, but these would satisfy me after only two. Of course, now I can't handle sugar.....so those are out.

Don't have much else to say......you already know that it'll get better......ya just gotta ride it out.

For me, food doesn't hold as much importance as it used to anymore.

[CeliacMom2008]

My son is the Celiac and I can tell you I've cried enough for a lifetime since December. Everyone is absolutely correct, you need to let yourself grieve. But when you're done, you need to pick yourself up off the floor and move on. There will always be struggles, but they really do get easier. I promise.

Now for those stragies you asked about. One thing that helped me enormously was making a list of meals and foods. I made an Excel spreadsheet with columns for: Breakfast, Lunch, Dinner, Sides, Snacks. Then I jsut started filling in things I knew how to make and that our family enjoyed pre-Celiac. I was surprised at how many of our favorite meals were really already gluten-free or could easily be converted to gluten-free. Then every weekend we'd sit down and plan out the meals for the whole week as a family (or house is almost entirely gluten-free). It helped so much. I could map out things like whole chicken for dinner one night and left over chicken for lunch the next day. Over the summer I got away from the list. Our normal meals pre-Celiac were close to gluten free in the summer months - we're big fans of grilled meats and fresh fruits and veggies. Now that school and soccer and PTO meetings and all the rest have started up again we're back to the week long menu planning. It really helps me cope.

Another thing that was a huge help to us was keeping labels. We have a pack of labels in a kitchen drawer from gluten-free items. In the beginning it was easy for me to forget which things we liked, what we'd tried, etc. So I started keeping the labels of everything new that we tried and we'd write on them with a permanent marker what we thought (Mom likes, everyone else hates; Gross!; YUMMY!; etc.). This also helped my son - he could get satisfaction from writing on the label if it was gross and then throwing it away, and I think it made him feel good that he could see all the things that said positive words as well.

Do try to splurge and buy yourself some gluten-free treats. You can buy them individually at the natural food stores and then buy them in bulk cheaper online if you end up liking them. Set aside a little extra $$ to experiment and don't think about the money you end up throwing away. If you do that for just a little while you'll start to build up a good list of things you love. There's a website glutenfreefoodreviews that I find helpful.

Lastly, when you find something you really miss, do a search or post a question here. Someone can probably offer you a good alternative. An aquaintance of mine who was diagnoses years ago recently told me she occassionally cheats with pizza because she misses it so much. I was shocked and immediately emailed her the pizza recipe we found here. I LOVE this pizza (again, I'm not the Celiac). I like it much better than anything purchased and I used to be just terrible making homemade pizza! So don't deprive yourself, just find a way around it.

Oh, and another thing that helped me when grieving the losses I thougth my son was going to have - I told myself regularly that just because this is the way things are now doesn't mean it will be this way forever. There have been so many strides in gluten-free foods over the past decade, heck, the past year! Don't tell yourself you will NEVER have __________ again. You don't know that. They may find a way to "turn off" the Celiac gene. They may perfect a pill that would allow you to occassionally eat a gluten item. They may perfect every gluten-free food known to man to be so good that the whole world goes gluten-free and wheat is an ancient term only found in history books. Just get through today, this week, this month.

Hang in there. The first month or two are the hardest. Then it really does get easier and you'll start to feel better and that will make everything easier!

[purple]

My son is the Celiac and I can tell you I've cried enough for a lifetime since December. Everyone is absolutely correct, you need to let yourself grieve. But when you're done, you need to pick yourself up off the floor and move on. There will always be struggles, but they really do get easier. I promise.

Now for those stragies you asked about. One thing that helped me enormously was making a list of meals and foods. I made an Excel spreadsheet with columns for: Breakfast, Lunch, Dinner, Sides, Snacks. Then I jsut started filling in things I knew how to make and that our family enjoyed pre-Celiac. I was surprised at how many of our favorite meals were really already gluten-free or could easily be converted to gluten-free. Then every weekend we'd sit down and plan out the meals for the whole week as a family (or house is almost entirely gluten-free). It helped so much. I could map out things like whole chicken for dinner one night and left over chicken for lunch the next day. Over the summer I got away from the list. Our normal meals pre-Celiac were close to gluten free in the summer months - we're big fans of grilled meats and fresh fruits and veggies. Now that school and soccer and PTO meetings and all the rest have started up again we're back to the week long menu planning. It really helps me cope.

Another thing that was a huge help to us was keeping labels. We have a pack of labels in a kitchen drawer from gluten-free items. In the beginning it was easy for me to forget which things we liked, what we'd tried, etc. So I started keeping the labels of everything new that we tried and we'd write on them with a permanent marker what we thought (Mom likes, everyone else hates; Gross!; YUMMY!; etc.). This also helped my son - he could get satisfaction from writing on the label if it was gross and then throwing it away, and I think it made him feel good that he could see all the things that said positive words as well.

Do try to splurge and buy yourself some gluten-free treats. You can buy them individually at the natural food stores and then buy them in bulk cheaper online if you end up liking them. Set aside a little extra $$ to experiment and don't think about the money you end up throwing away. If you do that for just a little while you'll start to build up a good list of things you love. There's a website glutenfreefoodreviews that I find helpful.

Lastly, when you find something you really miss, do a search or post a question here. Someone can probably offer you a good alternative. An aquaintance of mine who was diagnoses years ago recently told me she occassionally cheats with pizza because she misses it so much. I was shocked and immediately emailed her the pizza recipe we found here. I LOVE this pizza (again, I'm not the Celiac). I like it much better than anything purchased and I used to be just terrible making homemade pizza! So don't deprive yourself, just find a way around it.

Oh, and another thing that helped me when grieving the losses I thougth my son was going to have - I told myself regularly that just because this is the way things are now doesn't mean it will be this way forever. There have been so many strides in gluten-free foods over the past decade, heck, the past year! Don't tell yourself you will NEVER have __________ again. You don't know that. They may find a way to "turn off" the Celiac gene. They may perfect a pill that would allow you to occassionally eat a gluten item. They may perfect every gluten-free food known to man to be so good that the whole world goes gluten-free and wheat is an ancient term only found in history books. Just get through today, this week, this month.

Hang in there. The first month or two are the hardest. Then it really does get easier and you'll start to feel better and that will make everything easier!

Great ideas, esp. the label one!

[MyMississippi]

Eat a lot of chocolate and ice cream==== !! Wonderful coping mechanism-----

Seriously, you do HAVE to change your attitude toward food. There are things you will NEVER enjoy again.

But think of a blind person who will never see, a deaf person who will never hear, a paralytic who will never walk---

And keep saying "It could be worse,------ I'm so thankful for what I CAN enjoy "

[mysecretcurse]

I had a bit of a different experience than you because I am self diagnosed, and it took me a long time to really come to terms with the fact that I am gluten sensitive *possible coeliac, of course I wont know because I don't go to doctors*. But I am most definitely gluten sensitive and my lifetime struggle with some pretty horrific skin problems (not to mention digestional and emotional problems) are for sure a symptom of gluten. In a way I wish I had been officially diagnosed because it would have forced me to be Gluten-Free from the beginning. I had a hard time accepting it. Basically what I did for the first few months would be Gluten-Free for a few days or a week then eat gluten again, etc. So I never really had a chance to heal and for awhile I doubted that it was actually even gluten causing my problems. But eventually after suffering long enough I began committing to longer times Gluten-Free, and then when I would eat gluten again after those times, I'd get very noticably sick. It just kept going like that til one point, it was pretty much undeniable that gluten WAS the source of my troubles. After that point I renewed my committment to this and started going for it 100%. I remember the first time I made it a month without being glutened and my skin just began to clear up and glow. It was an incredible feeling after suffering horribly for so long. Of course, after that point there were many, many, many accidental glutenings, but it's been a continuing learning process. Every day I learn more about what is safe for my body and what isn't, and that's a good feeling. Hang in there.

[jjc]

I was recently diagnosed as gluten intolerant, and I kind of knew that I would because my daughter had also been dx recently.....but I never saw the casein diagnosis coming......that one really made me cry.

Not only do I have to avoid gluten, but now can I never have ice cream again?? I really grieved for at least a few days, and wanted to call everyone and make them feel sorry for me! Until I called someone and found out their relative was in the hospital for a SERIOUS illness......then I felt like a jerk.

The good thing about all this is maybe I'll lose those unwanted pounds and I've also noticed cravings going away. The bloating feeling too. It does help tremendously to keep an ongoing list of all of the good stuff you CAN have - that way there is always something to turn to. Good luck!

[glutenfreewithease]

I've was diagnosed less than a month ago, and I have been Gluten Free since. While I am feeling significantly better, I am also struggling to cope. For those of you seasoned gluten-free'ers, can you share your early coping experiences?

Like I said, I am feeling MUCH better, and I AM optimistic, I'm just overwhelmed

Hey Jessica are you anywhere near the Houston area in Texas? Can't seem to find too any celiac's in Houston.

[SiouxsieKim]

I am new to being gluten free myself and have had little or no help from the doctors. For as long as I can remember (pretty much from not long after I came off baby milk and on to solid foods) I have suffered from intestinal problems. I have been to many different doctors and nearly always been told IBS. I even got told it was childhood migraine at one point and they put me on tablets with a side effect of increased appetite. As a result hunger sometimes overcame the nausea so they thought it was working!! I've been previously diagnosed with depression and been given anti-spasmodics fro IBS. Nothing worked. I had symptoms of chronic stomach ache, bloating, nausea, severe dihorrea, aching and tingling in legs as a child, weak tooth enamel for seemingly no reason, mouth ulcers, chronic fatigue, low iron, gas, heartburn and all they could tell me was IBS or it it was all in my head!!

When I reached 19 I'd had enough, marched into a new doctors and demanded answers. He took a blood test and I was diagnosed with an underactive thyroid. I certainly wasn't expecting that and for a while my intestinal problems were sidelined while they dealt with my anaemia first and then my hypothyroid. This year I went back to the doctors again, desperate because my intestinal problems were worse than ever and it was ruining my life. He gave me peppermint oil!!! but he also took at test for Celiacs because of it link with hypothyroidism. I went on holiday and rang up for my results. negative the receptionist told me. But my boyfriend had got a book on gluten sensitivity and said it fitted me perfectly so we started out trying it for a couple of weeks. I cried a lot but it really helped having someone to cook with who supported me. Immediately the dihorrea stopped! the stomach pain carried on but lessened. One of the major things that helped me get over the food I loved was thinking of that food as my enemy, as the cause for my suffering all these years. A few weeks later my doctors contacted me... apparently my blood test came back weak positive but they had neglected ot tell me. It made me distrust doctors more than ever. It was too late to have a biopsy by this point becasue I had been gluten free for 2 months. I have carried on with the diet but have consumed accidental gluten a few times and suffered. It is a constant learning curve for me and I've even lost weight because I'm cooking from scratch and I'm not as bothered about eating like I used to be. Sorry to go on about it but this is the first time I've been able to say all this to people who have the same problem and understand. I feel the future is bright but it knocks me back when I discover another ingredient hidden in food that is gluten and it doesn't say on the packaging 'contains gluten'. If anyone has any tips for remembering I'd love to hear them

Kim

[GFinDC]

Well, I spent a bunch of time reading "whining" (just kidding!) stories by people on this forum. It really helped to see that other people have the same kind of problems and feelings and also learn how they dealt with them. There are some pretty neat people around here!

Then after I started actually feeling like a person for the first time in 10 years I got darned happy. Not too long after that I discovered that the thing under the microwave with the round metal grilles would actually get hot if I turned the knobs. And I made fire and cooked some rice! Some weeks time later I learned to cook rice that I didn't have to throw out in the garbage. I did attempt to make bread several times but eventually decided to shelve that project. Now I make pancake type bread once in awhile. Basically batter fryed like pancakes or little bits of batter for mini bread sticks. I am slowly expanding my diet to include new things that I can cook. And I found a frozen treat called Luigi's Italian Ice that is gluten-free and CF. Helps keep me cool when my thyroid is acting up. Medical necessity ya know. Oh, I got some new glasses also as my vision seemed to change somewhat. To some extent I feel like I am learning more about myself now. After going gluten-free, it seems my thinking has changed some and I can focus better but not become so intense about things. I seem to be able to actually get things done now also, which was a problem before. The good stuff way outweighs the giving up a few food items, that's for sure.

[ShayFL]

And there isnt really anything you cannot have. A gluten free alternative. Generally the ones you make at home will taste better, but there are some wonderful cookie and brownies pre-made or mixes where you just add liquid.

I am grain free. And I still get to eat cookies and muffins. I made blueberry muffins today. They are delicious and taste like little mini cobblers to me. I put in more blueberries than the recipe calls for.