Numb And Beat Up

[Slackermommy]

I have been going through a lot of turmoil since September, when I started altering my diet, which got me thinking about gluten.

I did not have the typical symptoms, and with a family history of autoimmune, without any celiac or gluten intolerance in there, this was never suspected. I searched and searched for an answer, just like most of you and I didn't think I was going to find it.

And I did, I found my answer.

After 4 years (and 6 or so doctors) of horrible fatigue, joint pain, and a multitude of other almost debilitating symptoms, I found out what has been causing this.

Gluten. I got my test results an two days ago.

My husband was there, and I almost immediately called my Mom to tell her. She and my Dad have been such a support to me during all this, when my husband was working days at a time, when the doctors said I was a Mom of two young kids and how did I expect to feel??

My Mom asked if I felt vindicated. My brother emailed me and said "It's nice to be validated." And they are right. I don't feel those yet. Actually, I feel quite numb.

I have been living gluten free for 5 months, and have seen drastic improvement, but I am not 100% yet. And now I am realizing this is permanent. Forever. No bread, no pizza, no cannoli, on and on..and now..constant vigilance when it comes to food.

(Another thought...thank God for my honeymoon in France..at least I had a croissant there, and crepes off the roadside stand..never again though..)

I should be happy that it isn't a worse disease and that there is a "cure". No gluten. Ever again. It will make me sick again if I do. But, I can't help thinking of all the things that I will never have again. My Mom's meatballs, eggplant, chicken, or veal parm, my Auntie Anne's famous "S" cookies with coffee, Tripoli's pizza (In Lawrence,MA for those family members that can eat gluten..., buy some..so good), and a multitude of other things.

I am mourning what I lost, but there is something else that really bothers me. My children. This is hereditary and they may have/may get this...and that breaks my heart and makes me feel so responsible. That is something to deal with another day I think.

All I can think of is the scene from "French Kiss", when Meg Ryan is on the phone, crying, and she raises one arm up, and says in a pathetic voice, "I will triumph."

Since I fought so hard to find out what was wrong, I know I will fight to live this life, and live it well. I hated being sick and not knowing why. Having doctors and friends not understand why I was sick and having them think I was a hypochondriac. Feeling less than. Feeling like a horrible mother and wife.

I know what to do now. I have the answer.

But... I am in mourning. I feel numb and a little beat up. I finally cried this morning, I think I needed to that. I am hoping to be on the way up now...

Thanks for listening. Thanks for reading.

[Jestgar]

Welcome to health, and to the board.

It really does get better, and easier. This is not a horrible deprived life, although I understand that it feels that way right now, and you should only feel relieved that you learned about this while your children are young. You have the chance to educate and watch them, and save them from all the trauma you went through trying to figure out what was wrong.

And next time you go to france, you can spend more time on the wine and cheese - not to bad of a trade

[ArtGirl]

Yes, it is a great loss. And you are in mourning - go ahead and cry. Sometimes we just need to do the emotional thing, even in the midst of rational thinking.

Go ahead and rant and rave when you get angry (this forum is a great place for that). We all understand.

[Megz]

I'm so glad i'm not the only one feeling sorry for myself

I have my one current comfort, Tim Hortons (for all you canucks) it's safe All's not lost when i can grab a cappucinno to feel better. I've got a lot of support around me right now and my parents have (to my eternal thankfullness) made some changes to help me along. We're taking the opportunity to go to restaurants we've never been to, to try recipes that we've never taken the time to try and we're all learning and helping.

I've never been a big eater (my mum calls me a bird and i've been underwieght for most of my teen-early twenties life) but now that my world is revolving around food i'm really noticing how many more options are out there than my limited understanding before.

But i still have moments where i sit and mourn the feeling of one more thing i'll never eat again.

And if i've recently been glutened i cry about the fact that i wish i'd enjoyed whatever it was that i ate instead of putting all kinds of crazy effort into helping myself and poisoning myself instead

[DingoGirl]

WElcome, Slacker Mommy (your screen name makes me laugh:) )

I think we all understand your mourning adn grieving and the curious mixture of profound relief that goes with it. You've entered a bewildering world, but you will continue to feel much better after some time. I have been one year and four days gluten-free (last year at this time I was on the couch about 18 hours a day, and now I'm working again), and I can't believe the difference in health and life; you will find the same.

A couple of things - - - please don't think you can't ever have those delicious foods again. Sure, the pizza from the restaurant is difficult, but many members of this forum make delicious pizzas (I haven't tried it yet).....but your mom's meatballs can easily be made with substitutions (gluten-free bread crumbs, and whatever else). Eggplant parmiggiano is also quite easy, and your aunt's cookies can be made with flour substitutions. You will learn the tricks and you'll learn to cook (I HATE cooking, that part's a pisser, but worth it). Keep coming to this forum, it's where we all learned almost everything, there is so much support and information here, really wonderful people.

Also, about your children......just watch them vigilantly, and serve food without gluten and in its purest form whenever possible. They will feel so much better, and so will you.

Good thing indeed about yoru honeymoon to France. Next trip - Italy - - they are very familiar with Celiac, you'll be able to travel there safely.

We're here to help. god bless!

[GFBetsy]

Mourning is all right. Because, yes, this is a life changing diagnosis. BUT . . . almost everything can be made gluten free! I make gluten free crepes all the time, and no one can tell the difference. I make gluten free cookies and the neighbor kids beg for more. I made gluten free Oreo's Sunday night, and made one of my non-celiac children cry by telling her that she couldn't eat any more of them because they were for her sister.

It does take more time to cook gluten free, because you can't just order out, but once you get the hang of it, it's very satisfying (taste-wise and accomplishment-wise . . . I LOVE IT when my kids say: "Oh, mom, you're a GREAT cook!"). And don't blame yourself if your children have celiac .. . blame your great-great-great-great-grandfather who passed the genes on to you! And really, would you want them to miss out on life just because they may have to miss out on croissants?

This will get better. It will be an emotional roller coaster ride for a while, but it WILL get better. And in the meantime, check out the cookbook "Saving Dinner" by Leanne Ely. It's got lots of great, naturally gluten free recipes. (Just don't serve anything with whole wheat rolls like she suggests ). And the website www.eatingglutenfree.com has a lot of really good recipes that will replace some of those things you are mourning . . . try the sugar cookies, they are REALLY good.

[missy'smom]

I've been gluten-free for about 6 months now and feel so much better but not a 100% yet. I'm frustrated about some things and impatient with the process at times too.

I'm going to Japan in the spring and it will be my first time gluten-free. I won't be able to enjoy the food that I love so much and feel really sad just typing the words and a voice inside says it just won't be the same. But I'm focusing on the the things that I love and can do. I plan to take MANY, LONG baths and daily walks through the rice fields with my son to find little fish and other critters that live in the streams, and enjoy green tea and rice confections with my sister-in-law. It'll be alot of extra work to make sure I get enough to eat and safe meals but even as I type this and start thinking about the things I can do I feel better. I just need to do this in my everyday life in the U.S.! It's easier to do when planning for a trip because you can plan and set your focus on something and look forward to it. I get caught up in day to day existance and so the kind of small pleasures of life that I mentioned above get lost in the shuffle and I even forget what it is that I enjoy. Which is a little bit of where I'm at right now. I need to rediscover the things that I've always liked that were gluten-free(food or otherwise) and give them more of a place in my life than I have done before.

Ok that's my little therapy session for the day. I'm not skilled at giving advice but can just share a little, hope that it may help someone and say that you're not alone. It has helped me alot to hear from others on this forum about their experiences.

[Jo.R]

This has been the best topic thread for me. It is so nice to hear other people feeling what I feel. I've been gluten free for 11 days. I cry. I almost broke my mouse slaming it into my desk because I couldn't find out if any of the pain relievers in my cupboard was gluten free. I can't stand any of the gluten free breads and tortillas that I've tried. I feel like I've been a witch for my husband to live with and that my kids have been cheated out of a good mom for for a year of their young lives. I'm frusterated that so many people with this have lost weight and I actually gained. I read about people who have all these dramatic differences in their skin and energy after just days off gluten, I feel about the same minus tummy problems. I'm sick of researching lables.

BUT, I am thankful that I only have celiac (bring on the milk and soy!) when so many people seem to have multipule allergies and health problems. It only took a year two tries ( about eight months)to find out what was wrong (first was to remove my gal bladder). That I can still have my Lattes. That most of my social life with friends are for game nights and snacks, which is easy for my. I have a higher tolerence and don't have to worry over crums and such.

As far as my kids go, I can't worry about what may not ever be, I got enough to worry about now. Besides, at least they don't have it now when they are too young to know why they can't eat what their friends are eating. My heart goes out to those raising kids with celiac, especialy the young ones.

I just want to say your not alone, this sucks. But there is more to life than food ( I cannot believe I just put that into print). We cope, thats what people do, we cope and find joy in new things.

[Rusla]

Welcome to the board and congratulations Slacker Mommy on the diagnosis. I started to cry when I read your post and I don't cry for anything except animals. I remember all too well what it felt like to be looked upon like a fabricating liar. It is a great vindication to be able to say, "see I am not nuts."

This is not a horrible life, it is not so tough as long as you are not poisoning yourself with gluten by trying to make two separate dinners for everyone.

However, there is no reason you can't have the meatballs, chicken, eggplant just find a way to do them gluten-free. Don't let this disease walk on you, you walk on it and you will feel better for it.

This loss is actually not much different than a death of something you loved, or like the dreams drug addicts have when they have quit drugs. You will get cravvings and you may even dream about the gluten but don't let dreams be your master.

My worst dream was that I was tied up and people were stuffing donuts and bread into my mouth. I woke up screaming and crying, scared the cats to death. It all gets better and not so hard.

[Slackermommy]

I just wanted to thank you all for responding..

Jestgar - Ok,..wine and cheese..great refocusing there. (that's what I do for my kids when they are upset!!) The thought of wine and cheese makes me happy..I will think of that instead.

Artgirl - Yes, we do need to rant. I was nervous about posting and joining "the club", and now I am glad I did.

Megz - "Wonder twin powers..activate" (Do you know that cartoon?) Anyway, thanks. It is so nice to see someone else feels the same way. I have determined, pity party this week, new resolve next week. No looking back. Join me?

Dingogirl - thanks for the welcome, and the hope that I can recreate my family recipes. I love to cook. It just seems so hard to relearn ALL the rules (esp. with baking). It feels overwhelming right now. By the way, I found a choc chip cookie recipe on a board here somewhere and made them with my daughter after I did my post..not too bad. Cheered me (and her, she's home sick) up a bit.

GFBetsy - Thanks for the link, I will def. check that out. I do dread everything taking longer with a 3 and 5 year old, and man I will miss take out pizza..yum... And, believe ot or not, I already have Saving Dinner!! I did not realize that most of that stuff was gluten free..I will be looking at that tomorrow.

Missy'sMom - Thank you. For sharing hope and for emphasizing. Funny, I traveled to Japan..yikes...10 years ago!! Anyway, I was thinking what it would be like there. The soy sauce would be the killer, wouldn't it? Good luck!

JoR. - I thought that the first 2 weeks were hell. I have heard some people here relate it to going off drugs, and I have to agree with them. I can't imagine going through that after getting my diagnosis, I would have felt AWFUL. At least I have that out of the way, I am only dealing with my emotions. I wish you well going through this part. ((hugs))

Rusla - Thank you. Thank you for your tears. That is a gift. I will feel stronger, and be more positive. I just need to feel this part, so I can get through it, and move on without looking back. And, there is that part, I haven't gotten here yet, that vindication. I wasn't crazy, or lazy. I can't wait to feel that part.

[blueeyedmanda]

I understand how you feel, sometimes I still mourn, I have days when everyone is eating cake or fill in the blank something in the office and I can't and no one seems to care I am left with nothing. I feel better thinking about how much better my health is and overall I feel great. You will feel so much better and since you have done the diet for a few months that is a step ahead of a lot of newly diagnosed. I wish you luck and remember we are here for you.

[2wheels4eyes]

Good gawd... I remember that numb feeling... had that too for days once I'd started the diet (way back in August!) And then trying to rationalize with myself that in the grand scheme of things I shouldn't complain... yet it's normal to want to.

As everyone else has said, it does indeed get better. And then it will hit you all over again. I remember after the numb feeling throwing myself into the diet, my food diary, new menus, etc. And after 3 or 4 weeks of that I felt like I had been such a good little gluten free girl that I should be "done with" having celiac. (HA HA!) I think I even posted here--saying how over it all I felt. Thus began a second period of mourning, when it hit me all over again that 3 or 4 weeks gluten-free was just the beginning...

But, as everyone else has said, it does become the new normal. And it happens faster than you think (or it did in my case anyway). Not that there's not still a learning curve for me 6 months into it, or that I don't still mourn at times, but it really does start to feel normal again. Life seeps back in and gluten stops being the only thing you think about.

I think part of getting through it faster will of course be the support you have around you but the other part will be to recognize your own definition of deprivation/abundance and then try to have that feeling of abundance gluten-free. E.g., for me, I like little gadgets and toys and things--so I got myself a couple of super-cool metal mini lunch boxes for transporting my "special" crackers, cereal bars, etc. I have a weekly brunch date with friends, which was especially hard at first--brunch *is* kind of brutal gluten-free. But after a couple of weeks I realized that the smallest thing made it all bearable, even enjoyable for me. In my case this was bringing my own toast, carried in my Wonder Bread container for the irony, to enjoy with my eggs at the restaurant. The funny thing is pre-gluten-free, I never really cared about toast at brunch--I usually left it on my plate. But now having toast for some reason takes away my craving for something carb-y when everyone else has theirs.

Sounds silly, but it might be helpful. I hope, anyway!

[klavirista]

Hello all, this is my first post although I've been lurking for the last month or so. I just had to post in response to slackermommy and Jo.R's mesages. I am also newly diagnosed (happened a week before Christmas). I also felt this enormous grief and utter frustration at finding anything to eat. I even had dreams of donuts for 2 weeks straight, which is odd because I usually only eat them once every 2 years. I just wanted to say to Jo.R.......the weight thing will get better as you heal. I have a weird thing going on where my arms, legs and buttocks are bone thin....so thin there is nothing but bone on there but my belly was swollen out so much I looked 8 months pregnant (even had people congradulate me on it lol) and my face was swollen really bad. No one thought I was underweight and my weight registered as about 15 pounds overweight. But as I quit eating gluten my belly started going down and I've lost almost 6 inches around it so far, my face also went back to normal and I can see my chin now I am now actually extremely underweight, which isn't good but it feels great to not look pregnant! This is actually giving me more "strength" in following the diet, as I used to get so depressed at the way I looked, clothes didn't fit, I had no shape, I felt horrible and did nothing but wear shapeless, baggy clothes with elastic waistlines. The 3 times I've made mistakes in my diet and was glutened my belly started to swell out again and stayed that way for almost a week straight. I'm hoping that when things get normalized I will start to gain some muscle in the appropriate places. I think that as your body adjusts to the gluten free diet your metabalism will start processing nutrients in the correct manner and you just might find things getting better. Slackermommy ( I hope I'm getting these names right, I apologize if I'm not) I feel the same as you but I have found things slowly getting better. I found that if I could locate a couple of treats that I used to look forward to things weren't so depressing. For instance, I found that some Starbucks fraps are gluten free ( someone correct me if I'm wrong about that!) and I schedule to have one every couple of days, just for that feeling of normalcy. I also found Baskin Robbins ice cream (not every flavor) is gluten free and I bought a pint and eat a few bites every day. Of course, these aren't nutritious foods but it certainly helped me to find something to look forward to instead of just eating vegetables, rice and tortillas. I have no idea how to cook and find myself standing in the fresh vegetable aisle at Whole Foods feeling utterly frustrated at what to do with them, knowing there must be ways to make a fantastic meal that tastes good but not knowing where to start. Also, Ener G foods has some great bread called Seattle brown loaf and some GREAT crackers that taste just like the real thing! Here's the link:

Open Original Shared Link

I hope you start to feel better soon

[Creative-Soul]

Slackermommy,

I am glad that you found your answer, and definitely understand your mourning; so many of us can relate! Wecome to the forum... you'll find it a great source of support and information. We are here for you!

Wecome to Klavirista as well!

[happygirl]

Slackermommy and klavirista:

We are happy that you have both found answers, and that you have made the leap into our community!

I think one of the strengths of this board is that people really GET it. We get it because we've been there, and are there everyday. Granted, we all have our phases, but I don't think anyone on here has forgotten the strong (and yet conflicting) emotions that we felt once we were diagnosed. I think its good that we all allow ourselves to 'mourn' for our foods (I remember crying the car a few days after being diagnosed, when I saw a Krispy Kreme truck drive by....I sobbed. And sobbed.)

The good thing is, that we are here to help, with information, support, recipes, tips, education, and laughter. And hugs for the frustrating days.

My best advice:

1. Read the book listed in my signature (I wish I had it when I was diagnosed. It is an invaluable resource!)

2. Read a lot, even the threads that you don't think apply to you, because we get off topic and you can learn so much in one off-topic thread! And do searches.

3. No question is stupid. We have all asked it or wondered at one point. And there is no off limits topic....Celiac symptoms are rather delightful, we all know it and have it, so no need to think that anything is "TMI"

4. Focus on the foods you can have, and modifying "normal" recipes in your house (switching brands of things, changing things up a bit) so that everyday life still has "some" semblance of normalcy.

5. We all make mistakes. Each mistake is an opportunity to do better next time. So don't beat yourself up too badly when it happens, because it will....we ALL have been there!

Laura

[SchnauzerMom]

I was never diagnosed with celiac I pretty much diagnosed myself. When I stay off gluten I feel so much better. I really loved baked goods, whole wheat flour and so forth so at first it was difficult. I use alternative flours now, I like qunioa and amaranth the best. I bake bread, cookies, pizza crust and chocolate cake. The taste is different but I love it now. I can have chocolate cake and not get bloated and sick. It helps if you just remind yourself how bad gluten makes you feel.