Already Tired Of This!

[Guest ~jules~]

I guess after you are diagnosed with a disease you go through a different series of emotions, well right now I'm not happy at all. I think this whole disease is b.s. and yes I do intend on following every rule to a T. because I don't want to damage my body any further, and I am not stupid. However, I am not liking the fact that if I want to pop in somewhere and grab a treat, I can't, I can't have a beer, I can't, I can't, I can't. I run 4 times a week, I am extremely disciplined when it comes to my body and my diet, but this, this is just STRANGE. I have been sick for about 2 years. I now know after researching this disease that I have probably had it for a long time, things just got really bad, you know GI symptoms came to me and I lost alot of weight. I went to my family prac. dr. (quack-dr.) well according to him I had a parasite from a camping trip. Well I have been going to that spot since I was a child, and no one else on that trip got sick, and the stool samples showed nothing, but I took his drugs, went to disneyland with my family for spring break, and moved on. Skinny, skinny, are you okay? are you on drugs? are you eating? NO! So, 3 months after disneyland I went back, doc, things are the same, I'm starting to feel like death, whats wrong with me? IBS...and a long lecture about IBS, and a note to a specialist. So, I go to the specialist, he gives me a colonoscopy, how fun! Wow, big surprise, normal. So, I went home, accepted that I was just sick, and dying of god knows what, and moved on the best I could. I am a married, young mother of two small boys, I own a small business, and am active in many other things, I didn't have time for my failing health. HA HA! I had to go back to the specialist, I got really sick, again really badly this time, I was convinced I was dying of cancer of aids or god knows what! The specialist quizzed me for what seemed like forever, asking me the same questions over and over again, until finally he said, I want to order blood tests for sprue, (lol, he's a little phillipino man I can hardly understand, so I'm always saying "i'm sorry excuse me what?") Then I took the blood tests, I had an abnormal gliadin reading, I guess the norm is like 20 or below mine was 130. The next week I had my upper endoscopy and biopsy, yep, I'm a celiac. I am relieved that i'm not dying, god yes, I am relieved. However this is really annoying, and I am looking forward to any support and help, advice, anything this site can do for me. I was only diagnosed last week, (hence the anger lol) and already I am sensing that people don't get it, and don't want to get it. I am enjoying all the stories, and litte things here and there so far, so keep it up! thank you all, ~jules~

[mouse]

I am sorry Jules that you are having to deal with this disease. I would probably address this more in detail, but I am tired and heading to bed shortly. I did not feel your anger, but since I was about 2 weeks from being dead (according to my dr.), I was just relieved to have an answer. Many on here have gone thru denial and the anger. So, you are not alone with those emotions. And I have to agree that many of your friends, relatives and co-workers will not get it. And then you will have a friend who will go completely out of their way to make sure they do not cross contaminate you. They will check with you on everything as they want to make sure you have something to eat. Then there will be other friends that will be afraid to offer you even tea in their homes. Most of our friends are afraid to feed me and so we meet for dinner (and I choose the restaurant). I hope your husband is giving you a lot of support during this difficult time? It is very important that your immediate family realizes that they can make you sick by cross contamination. Honestly this does become easier. And I think that as more and more magazines, newspapers address Celiac disease, that this will help us with friends and family. And it has been getting much more press lately.

Welcome to the forum. Many more will post on this thread during the week. The forum is slow on the weekend.

[tarnalberry]

It's hard to transition from something we think we have a right to have, to being told it'll slowly kill us. If you've never heard of it before, and aren't familiar with food allergies, then it just really doesn't make any sense.

But there is good news: If you are flexible, and willing to adapt, it does get much easier, after getting over the learning curve.

It's a major change, some people will be understanding, some won't. Some people will help you, some will work against you. But as you said, it's not really optional, so there's not much to do but grieve, and move on. It's a major loss, though not as dramatic as many other major losses, it's a major loss all the same, and the smae process is often gone through. It's all the harder because people around us can still have these items.

But there is SO MUCH that you can have. You can still have beer, or pizza, or pasta, or bread, or crackers - you just have to buy or make gluten free ones. There may well be a whole world of food that you wouldn't have thought of eating or known about before this. It's taught many of us much more about what we're putting into our bodies - and more about what options we have - even if we were well educated on the subject previously.

It's strange because it's new to you. Keep learning, keep reading, keep asking questions, and keep slogging through it. The first stages are tough, but you will get through them, and come out the other side with it being easier than when you started.

[Nantzie]

As grateful as I am to find out about celiac and all the hundreds of wonderful things that have happened in my life as a result of going gluten-free...,

Yes! Absolutely. Some days it just drives me insane. It sounds so stupid. It sounds like something somebody made up and didn't even put much thought into. If this was a plot point in a story, the whole thing would fall apart because it sounds so ridiculous. I mean "suspension of disbelief" is one thing, but let's be a little serious here. Of all things to have a autoimmune disease be about...? Gluten??? Are you kidding me? One of the crops that basically created civilization as we know it? I mean they say that wheat has opiate properties, and 1 of 133 people have celiac with God only knows how many who *just* have gluten intolerance, so does that mean our whole freaking civilization is basically built around getting our gluten fix? I mean come on!!! And what's with all the wheat in the Bible? I happen to be a Christian and I have faith, but God is going to have to explain that one to me someday.

Stupid gluten.

Nancy

[Guest Doll]

Hey Jules, I understand 100%! I'll let you know if (and when!) I find a good gluten-free beer. I'll probably have to import the sucker from the Netherlands and pay $20 a bottle, but believe me, it will be worth it.

[Ruth52]

I can really understand your frustration. Life as you knew it will never be the same again!

But don't be disheartened. There is a whole world of new and interesting food just waiting for you.

Ruth

[Debbie65]

I´m sorry you´re so angry and upset but isn´t that one of the natural phases that people go through when they´re given news that totally changes their way of life. If you try to see it that way maybe it will be alittle easier to deal with. Also when you see the benefits to your health it will seem more worthwhile.

I was lucky in that I just thought well if that´s what´s required I´d better get on with it but then there´re things that I agonise over that could be considered trivial in comparison to celiac disease.

It´ll take a lot of getting used to but you´ll get there and you´ll have the support of everyone here whenever you need it.

Take care.

[gfp]

Your anger and frustration are all very understandable but lets instead adress how lucky you are.

I am a married, young mother of two small boys.

Congratualtions do you know how many people think you are lucky

I was convinced I was dying of cancer of aids or god knows what!

Well, you're not and you are not going to be parting this world anytime soon leaving two small boys!

Step back. Today in surguries across the world thousands of Dr.s will be reading results to thousands of young mom's telling them that they will not be here for thier kids, that they face chemotherapy, surgury or radiation therapy.......

I went to my family prac. dr. (quack-dr.)

Yes and you might have seen the same Dr. with something like early stage breast cancer and been dismissed and now facing inoperable cancer because of this quack!

I hope your husband is giving you a lot of support during this difficult time?

This is really important. I can't stress enough the need to get a spouse onboard.

[Guest ~jules~]

Thanks to all for the support! Yes, I had a major rant, and it really made me feel better to get it out. Its so strange these mixed emotions I am having, on one hand I am happy its celiac and not something more serious, on the other, like I said this disease is strange! Its going to take time to adjust to the new lifestyle. I went right out and bought a breadmaker, and have already made some tasty buttermilk bread. I tried some nasty cookies I found at the grocery store, eck! I think I better learn how to make my own! lol...I do have a very supportive husband, he is a wonderful man, I am very lucky. He even offered to go gluten free, thats very sweet of him but I can't ask anyone to do that for me, My mother is a diabetic, so now we just agreed to be the weirdos in the family who can't eat anything. I really need to gain a few pounds back though, I'm trying to up my calorie intake with some of the things I can have. I am interested in learning from other celiacs, recipes, stories, you name it! Thanks to all

[GFBetsy]

See if you can check out the book "Saving Dinner" by Leanne Ely from your library. It's not technically a gluten-free cookbook, but most of the recipes are gluten-free or are VERY easily modified (corn starch instead of flour as a thickener). I love it. I use it all the time, and no one ever even notices that we are eating gluten free because everything tastes so good. That might make it easier for you to feel okay about including your husband in your diet!

[Guest Doll]

Sadly, Jules, many of us have a story similar to yours. The misdiagnoses, ignorance, and the disease itself is overwhelming to reflect on at times. And I'm not going to give you false hope that one day it will become second nature. I know that I will NEVER like gluten-free bread, cereal, etc. I will NEVER stop missing Molson Canadian beer or the occasional McD's cheeseburger. I will never be able to go to a restaurant and order off the menu without informing the server that I have Celiac. And that is ok to grieve for those things.

But what I DO know is that you can make some pretty darn good gluten-free dishes that are NATURALLY gluten-free, tasty, and healthy. For example, last night I made Tinkyada Brown Rice Pasta, and then made a sauce using Hunt's Tomato sauce, chopped up zucchini, onions, red and green bell peppers, sea salt, my special gluten-free dill weed, and pepper, and some cooking wine. I baked chicken breasts covered with olive oil, lemon juice, sea salt, pepper, and cooking wine for 35 minutes. I then added the chicken to the sauce and YUM! I actually didn't like pasta pre-Celiac and surprising like the rice pasta more than I ever did wheat. Due to this, I had never made a pasta sauce before last night! And my bf ate 2 plates so it must have turned out ok! You too will find that you can make tasty stuff you never knew you could!

We cope the best we can, and leave it at that. If you can find a restaurant with a gluten-free menu in your area, it helps to be able to go out for a nice safe meal once in awhile.

[ArtGirl]

First, let me say welcome to the forum. It is the world's greates support group - not to mention all the high-level information herer that will make your gluten-free life so much easier.

And, I think that everyone goes through periods when they are really angry about it all. Just last weekend I we had a whole house full of company, and catered in a barbeque dinner. I couldn't eat ANYTHING that was served except my cucumber/tomato salad. Monday I had a real pity party, but I didn't cheat, and am so glad I didn't. That said, I do think I deserved the pity party if only for a few hours.

I do have a very supportive husband, he is a wonderful man, I am very lucky. He even offered to go gluten free, thats very sweet of him but I can't ask anyone to do that for me,

I wouldn't turn him down flat on this. You may find that later on as you work to making your kitchen safe for you to be in and cook in that you will want to severely limit the gluten-containing foods that you cook and give cupboard space to [actually, I no longer handle or cook gluten-containing foods]. I have a very supportive husband, too, and over the last few months he has reduced the breads and stuff he eats and they are all kept in one cupboard and there is only one bit a counter space that he can use for gluten foods - and he's okay with that, too. He is very willing to eat meals that I cook that conform to my diet and says that one of the great things about this is he's getting more home-cooked meals now.

As for others outside the family, I wouldn't waste much emotional energy on them if they "don't get it." I seldom explain but just say nicely, "no thank you" when offered foods I can't eat.

[queenofhearts]

I certainly understand your frustration, both with the doctors (your story sounds much like mine) & with the gluten-eating world in its blissful (& sometimes willful) ignorance... but I think as you begin to heal & reap the physical & mental rewards of the diet, you'll be able to see the big picture a little more, & it won't be so hard.

Hang in there!

Leah

p.s. When I'm feeling down I often turn to this thread for a reminder of all gluten-free has to offer:

Open Original Shared Link

[tarnalberry]

He even offered to go gluten free, thats very sweet of him but I can't ask anyone to do that for me,

Ditto on the advice not to turn him down so quickly. Having a gluten free kitchen - or at least a primarily gluten free kitchen - makes it *significantly* easier to avoid contamination. My husband is a pretty picky eater, but all of our shared meals are gluten free, and all the cooking in our kitchen in gluten free. He has a special shelf (too high for me to reach ) that has crackers, candy, oatmeal, cereal, and granola bars, and he has one small corner of the large counter (on a large cutting board) that is the only place (outside of the plate he's using) where bread is allowed, but other than that, he eats gluten-free with me. Out of the house, he eats whatever he wants, of course, but in the house, he helps me avoid contamination.

He's noted that it's not a problem at all, and he's not deprived since he still has his contained stuff and can eat anything outside of the house. And it keeps me from worrying about anything except avoiding the bread board, and the tub of margarine (that is clearly labeled as his) in the fridge. Everything else that I have access to in the kitchen is safe for me. It also makes it much easier mentally, if I'm going through the kitchen looking for something to eat when I'm hungry, because I don't have to keep saying "can't have that, can't have that, can't have that".

[CarlaB]

It's difficult, that's for sure. I have six kids and haven't felt 100% better after 8 months of being gluten-free, so we just decided to make our home completely gluten-free. There are only 3 out of 8 of us who need to eat this way. The problem is, the others contaminate the kitchen and no matter how careful we are we get sick. I would never let someone come in my kitchen and prepare rat poison, but that is about the equivalent for me and gluten. That being said, when we cook out, we have buns and paper plates. They also eat gluten at school or when they're at their friends houses. Being gluten-free at home is not the same as being gluten-free! Even before our whole kitchen was gluten-free, I still only cooked gluten-free for the family. No one even notices as many foods are naturally gluten-free and I just cook those. I use the Tinkyada pasta someone recommended. When kids have friends over, I'll buy Cocoa Pebbles, Fruity Pebbles, Cocoa Puffs, or Dora the Explorer cereal -- normally we just eat fruit for breakfast then eat an early lunch. If we go out to a restaurant with a gluten-free menu, my husband will also order off it so his kisses are gluten-free!

I didn't really have the anger, my problem was, and sometimes still is, denial -- but not bad enough to cheat.

[ArtGirl]

And what's with all the wheat in the Bible? I happen to be a Christian and I have faith, but God is going to have to explain that one to me someday.

Yeah, and the barley, too (i.e. - feeding of the 5,000).

[CarlaB]

Yeah, and the barley, too (i.e. - feeding of the 5,000).

Since this is a genetic disease, and it seems that common sense would tell us that as time goes on there are more improper mutations of the genes, could it be that there are more people sensitive to it than there were then? I am no scientist, but it's an interesting question.

[floridanative]

Jules - welcome to the club. When my first GI mentioned Celiac Sprue to me last September I went home and googled it and thought it was the most ridiculous thing I'd ever heard of. Quickly I figured out this was real and worst of all, I could have it. Then when I got my dx this past January, I read all about cross contamination and thought - well that is the most ridiculous thing I've ever heard of....until I experienced it myself. And that was from eating grits - you know like I've eaten my entire life. Nope no gluten in grits as they are made from corn but mine were made by Quaker and they don't clean their lines between batches of wheat items and grits. I did most of my grieving before my dx (type A personality) and I'm glad. I really went through anger after my dx and finally acceptance.

You will eventually get the hang of this whole gluten free thing. It's hard to learn to read labels at first but it will soon become second nature to you. It was hard for me never having cooked much before and now I love cooking and baking (only 7 months later). Definitely the hardest part for me is dining out. I learned how to do so safely but I don't expect it to ever be easy unless I move out of the US. Good luck to you and let yourself feel everything you're feeling because you have to go through that to get to the other side. I'm glad you have a supportive DH because that makes all the difference in the world. My DH questions things sometimes when I've told him something is fine like something from Kraft. He's really got my back.

Pretty much anything you might need is on this board except a few books like 'Living Gluten Free for Dummies' by Danna Korn and Dr. Peter Green's book 'Celiac Disease :A Hidden Epidemic. For the emootional stuff I recommend a book called 'A Personal Touch on Celiac Disease'. One of our posters on here (Jessica) has several entries in that book. It really helped me immensely and I just loaned it to my Celiac Mother. If you want to check out a book from the library, look for 'Wheat-Free, Worry-Free', also by Danna Korn.

[jknnej]

What I miss most is simply the convenience of stopping to eat anywhere I please. If I am hungry in the morning while at Starbucks I used to be able to grab a muffin. If I'm on a trip I could stop in to get a burger or sandwich anywhere I wanted. Sure, I carry food with me all of the time, but I am soooo sick of the same stuff...it's not like you can have too many things that aren't refridgerated. Pretty much limited to fruit, nuts, or other gluten free snacks but as I said, they get boring.

That's what I miss.

[Guest ~jules~]

Thanks again everyone. I was curious though, do I need to have a separate cupboard for my things? Also how do I handle making the kids sandwiches with their bread, just wash my hands afterward? Wow, I think I have got a lot to learn, and I really appreciate all this advice. I have already made the whole family gluten free with a few things like what I coat things in, and gravy, I don't see the sense in making two different things thats rediculous. I think some things will change and some wont, and thats okay. I'm a big-time baker around the holidays, how does the rice flour work out with cookies? The whole cross-contamination thing has got me really worried, I found myself staring at the bread crumb ridden counter top my husband always leaves for me in the morning, thinking hmmmm thats gotta change bud....lol Ahhh, I also had my first ordering out experience today with a waitress, jeez that was weird, she looked at me like I was a strange bug she'd never seen before Then after I was 100 percent that what I ordered was okay, I was still worried that maybe it may get contaminated. I may not be eating out much anymore, maybe just here and there. Once again thanks everyone for all your support! ~jules~

[ArtGirl]

Thanks again everyone. I was curious though, do I need to have a separate cupboard for my things? Also how do I handle making the kids sandwiches with their bread, just wash my hands afterward?

Wash your hands after handling gluten laden foods and wipe down the counter top - retire the cloth to the luandry and put out a clean hand towel - actually, I have my own hand towel and my husband has the "gluten" towel.

Are your children old enough to make their own sandwiches? My husband makes his sandwiches now on the kitchen table rather than the counter top and the crumbs can be brushed into the trash basket. What falls on the floor is eliminated by the dogs! Then I wash the table good before a sit-down meal. We don't have children at home so my advice is limited.

I need to have a separate cupboard for my things?

Actually, I have a separate cupboard for the gluten things. The rest of the kitchen is MINE! Even the dogs eat gluten/corn-free food.

[happygirl]

Jules-

Just wanted to offer another voice of "been there, done that, got the gluten free t-shirt".

It is a tough road and we can all sympathize. We are happy to have you on the board, even though it is under the guise of this disease! We hope we can help....and in no time, you will be writing to a newbie, "I felt exactly the same way....but don't worry, it will get better." I PROMISE.

On the other hand, I swore for the first two months, if I heard someone say "Oh, it'll get easier. You'll get used to it" ONE MORE FREAKIN' TIME.....physical harm was going to come upon them. Maybe that was the evil gluten talking and getting out of my system?

Anyways, we know it sucks sometimes. When you get down, which will undoubtedly happen, remind yourself that even if you don't want to do it for you sometimes, you are doing it for the three biggest blessings in your life. Your sweet husband and darling sons!!!!!!!!!

xoxo

[CarlaB]

I have a separate cupboard for my things and a separate place in the refrigerator. But we are going completely gluten-free in our house, so soon we won't have to do that kind of separating.

The longer you're off the gluten, the chances are, the more sensitive you will become. Shared things like peanut butter, mayo, etc. will need to be clean of gluten. You might want to have separate jars. When we were a mixed kitchen, I had all sandwiches or other gluten items made on the island only.

[toothpicker]

I'm sorry that you are feeling so down. It is a major adjustment... I am only 2wks into it myself. I hope you find some comfort in the fact that you are not alone... this site seems to be full of caring, compassionate people who are willing to help in any way that they can.

Take care

[lonewolf]

And what's with all the wheat in the Bible? I happen to be a Christian and I have faith, but God is going to have to explain that one to me someday.

Stupid gluten.

Nancy

This is just my guess, but I think that wheat and barley in bible times were made into bread through a sourdough/fermentation process - they certainly didn't just go buy yeast at the store. There is evidence that the fermentation process does something to the gluten that makes it easier to digest or just plain breaks it down. So, people who consumed all their grains in a sourdough type bread wouldn't be getting as much gluten as the average 20th/21st century person and thus less gluten problems.