Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

roxie

Sad

Recommended Posts

Hey! I am a newbie to this group. I am sad! I just recently found out that I have celiac disease, and I am also lactose intolerant. To make things worse, I also have chronic back pain. My husband and my kids already have to help me so much because of my back, but now they also have to deal with all of my food issues. I feel like I am driving my husband crazy because it is all I can think about. Last night we went to dinner at the Cheesecake Factory, and I went into panic mode because I didn't know what to order. Then we went to a Birthday party, and I again went into panic mode because I didn't want to have to tell everyone why I couldn't eat the cake or the food. It seems like it is just easier to deal with the symptoms. I can't imagine trying to eat like this for the rest of my life. There are some things like Birthday cake that I refuse to give up. It's extremely hard when you have 3 kids, and they eat non-stop. I am only 36 years old, and this seems like a death sentence. I also have issues with eating disorders, and that just makes the food issues even worse. How can one person have so many things going on at the same time???

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome, Roxie,

Your diagnosis is actually good news. The death sentence is having celiac disease without knowing it, continuing to eat gluten, and developing some of the related conditions including cancer. Even if you have not been experiencing the debilitating digestive symptoms of celiac disease, you will be much healthier and will live longer by following a strictly gluten-free diet. Today, that does not mean giving up much of anything. Most foods can be made or purchased in a gluten-free form. Many mainstream food products are gluten-free.

Your lactose intolerance may be temporary. If your villi have been damaged by celiac disease, then you are incapable of producing lactase (the enzyme needed to digest lactose). After you have been gluten-free for a while, your villi have a chance to heal, and you may be able to consume lactose again.

I have been gluten-free since 2000. The last seven years have been the healthiest of my life (I'm 53).

This site, and the related site celiac.com are great sources of information and support.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

Share this post


Link to post
Share on other sites

Join eNewsletter

Welcome,

You have good advice from Peter. It is not a death sentence, just a healthy lifestyle change. Read more on here and you will find all the expert advice you need.

To start, I would forget about "replacement foods". Eat whole foods you make yourself- chicken, fish, meats, eggs, veggies, fruits, nuts and seeds. Once you heal, you will find you can SLOWLY add things back in. Keep a food log with symptoms listed; it will be invaluable to you. Don't eat out for awhile- it's too risky. I am 2 and 1/2 years gluten, soy, dairy, egg. legume free and I have added dairy back in the form of yogurt and cheddar cheese.

Good luck to you and keep coming here for help- there's lots here!

lisa

Share this post


Link to post
Share on other sites

Join eNewsletter

I apologize in advance, but I'm in a pissy mood today.

You have three children. Do you want to live to see them grow up get married and have children of their own? Do you realize that the odds of you being diagnosed with cancer are hugely increased if you continue to eat gluten? Do you realize that there's a good chance your children have inhereted your genes and could be diagnosed as Celiac one day too? What kind of example will you have set for them on down the road if they see that you can't stick to a gluten-free diet? Is a slice of birthday cake really worth a cancer diagnosis and early death?

You now have the tools to change your life. You know what you have to do and by going gluten-free you could be extending your life by decades. Yeah it's hard, I know that, everyone here knows that, but the trade off is that you'll get to watch your kids grow up. And the back pain will probably lessen considerablly if you go gluten-free. It did with me, it has for many people here.

Do not think about forever. I've found that what works for addicts works for me as well. Think about today, this meal this moment, NOT about forever. Forever looks like a death sentance, today does not. One day at a time, one meal at a time, one grocery shopping trip at a time.

And if you can't handle the eating disorders and this diet maybe you need to sit down with someone who can help you work through it all. Yes, you've got a lot on your plate. So ask for help. And we all are here. This site is a wonderful resource; the people here are wonderful. I'm sure somewhere here is someone who knows how to successfully eat at the Cheesecake Factory. Ask and I'm sure someone will answer.

You have this amazing opportunity to change your future. You can take it and avoid a whole lot of grief and pain or you can refuse to change, shrug it off and pay the price later. But the price is liable to be pretty high.

Hey! I am a newbie to this group. I am sad! I just recently found out that I have celiac disease, and I am also lactose intolerant. To make things worse, I also have chronic back pain. My husband and my kids already have to help me so much because of my back, but now they also have to deal with all of my food issues. I feel like I am driving my husband crazy because it is all I can think about. Last night we went to dinner at the Cheesecake Factory, and I went into panic mode because I didn't know what to order. Then we went to a Birthday party, and I again went into panic mode because I didn't want to have to tell everyone why I couldn't eat the cake or the food. It seems like it is just easier to deal with the symptoms. I can't imagine trying to eat like this for the rest of my life. There are some things like Birthday cake that I refuse to give up. It's extremely hard when you have 3 kids, and they eat non-stop. I am only 36 years old, and this seems like a death sentence. I also have issues with eating disorders, and that just makes the food issues even worse. How can one person have so many things going on at the same time???

"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

Share this post


Link to post
Share on other sites

Join eNewsletter

Once you go gluten free you may very well find that the symptoms of your eating disorder resolve. :)

Like violet says, a specalist can help you work through all this. My dietician is the best-even though I'm perfectly cool with the diet now, we still chat! Now that your relationship with food has changed forever its a great time to approach healing (((((hugs)))))

Sorry, just took my meds :D

edited to add-looks like you have a lot of options at the Cheesecake factory, once you get the hang of the diet. The Godiva Chocolate Cheesecake with flourless brownie crust (make the use a clean knife to cut it) assorted steaks and salads with minor alterations. Eating out is always risky, but it can be done if you're careful. I only eat at places that make an effort to have gluten-free menus, because I want my celiac dollar to go to people who try to help us. That is just a political thing with me, however. I just made a ton gluten-free pound cake (I have a freezer full of baked goods). The gluten-free brownie mix at Walmart is great-its not like you have to give up cake. The cakes I make taste better than anything I ever had before I went gluten-free.


I don't eat gluten and neither do my cats

Share this post


Link to post
Share on other sites

Join eNewsletter

I apologize in advance, but I'm in a pissy mood today.

You have three children. Do you want to live to see them grow up get married and have children of their own? Do you realize that the odds of you being diagnosed with cancer are hugely increased if you continue to eat gluten? Do you realize that there's a good chance your children have inhereted your genes and could be diagnosed as Celiac one day too? What kind of example will you have set for them on down the road if they see that you can't stick to a gluten-free diet? Is a slice of birthday cake really worth a cancer diagnosis and early death?

You now have the tools to change your life. You know what you have to do and by going gluten-free you could be extending your life by decades. Yeah it's hard, I know that, everyone here knows that, but the trade off is that you'll get to watch your kids grow up. And the back pain will probably lessen considerablly if you go gluten-free. It did with me, it has for many people here.

Do not think about forever. I've found that what works for addicts works for me as well. Think about today, this meal this moment, NOT about forever. Forever looks like a death sentance, today does not. One day at a time, one meal at a time, one grocery shopping trip at a time.

And if you can't handle the eating disorders and this diet maybe you need to sit down with someone who can help you work through it all. Yes, you've got a lot on your plate. So ask for help. And we all are here. This site is a wonderful resource; the people here are wonderful. I'm sure somewhere here is someone who knows how to successfully eat at the Cheesecake Factory. Ask and I'm sure someone will answer.

You have this amazing opportunity to change your future. You can take it and avoid a whole lot of grief and pain or you can refuse to change, shrug it off and pay the price later. But the price is liable to be pretty high.

Thank you for your reply! I think you told me exactly what I needed to hear.

Share this post


Link to post
Share on other sites

Join eNewsletter

Roxie, I made a delicious lunch for eight people today, corn tortillas with various fillings, and Black Forest cake for dessert. All gluten-free, of course.

Only one other person other than me eats gluten-free (my youngest daughter, the others are still in denial, even though they have symptoms), but they all thought that my cake was to die for! Everybody loved the food.

Eliminating gluten from your diet doesn't mean you will be deprived of anything. After you get the hang of the gluten-free diet and feel well, it won't be a big deal.

By the way, one of my celiac disease symptoms was a debilitating backache (which comes back when glutened). My back before eliminating gluten was so bad that I could hardly move. Within days of going gluten-free my back started getting better.

I hope that your back will improve soon. I am sure you would agree that just getting rid of that terrible back pain will be worth sticking to a gluten-free diet!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

Join eNewsletter

Can't really empathize about the birthday cake, not my favorite. But, I have been making some killer gluten-free chocolate muffins lately.

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

Share this post


Link to post
Share on other sites

Join eNewsletter

Roxie, welcome to the board. I have learned to bake gluten-free - it takes a little extra effort. There are some good mixes that people here use for cakes (gluten-free Pantry, Namaste are two) that work. Or you can make them from scratch like I do. My kids BEG for my gluten free brownies and gluten-free carrot cake. Don't jump right into the replacement foods just yet but by this time next year you can make a killer birthday cake if you wish.

Add me to the list for back pain. I had it every day, took ibuprofen every day, but that didn't get rid of the pain (and I didn't want stronger meds). Pain went away the first week and I haven't taken any for back pain in a year now. I wish for you the same resolution.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

Share this post


Link to post
Share on other sites

Join eNewsletter

Hey Roxie,

I couldn't agree more with what everyone else has said here. It's not a death sentence to have been diagnosed. It's just the opposite. You CAN do without the gluten, and once you get the hang of it, you're likely to find it's not limiting, it's liberating! You are going to feel so much better, you're going to feel happier, your family will notice, and they will be glad to support you when they see the change. Don't panic about the things you can't eat. There are tons of things you can eat, and with a little education and some patience, you can learn quickly how to read labels, spot the things you can't eat, and find the things you can. You can always bring your own stuff, and once you get a little practiced, you can learn how to find things where you are that you can eat. This website, and the support you can get from the people who use it, are phenomenal. I have only been gluten free for a little over a month, but already, I have been cooking some great gluten free dinners for my family (no more time consuming than anything else I ever cooked), and yes, we go out to eat too. This morning I went with my daughter and husband for breakfast. They had eggs and toast, I had eggs and a fruit bowl. Tonight friends from out of town came to visit and once again, we went out to eat -- at an Italian restaurant. I didn't need to panic, because now I know there are almost always things on the menu I can eat -- good things to eat. I checked quickly with the waiter to make sure the dish I wanted didn't have an flour in it, reminded him quietly that I didn't want any pasta on my plate, and we all had a great time. My friends were so happy to learn that my neck pain is gone, they were fascinated to hear about the gluten issue.

Trust me. Don't panic about this. As someone else on this forum said, this is not the example you want to set for your kids. You want to show them, by example, that you can roll with the punches and be positive. Really, it will pay off for you. Good luck.

Ellen

Share this post


Link to post
Share on other sites

Join eNewsletter

It is pretty overwhelming at first but gets better as you adapt to a new lifestyle. I also have 3 constantly eating 12 year olds. I do a lot of baking (glutenfree) and they don't feel like they are missing out on much. There are some great cookbooks out there and some really great cooks that hang out in the baking section of this forum. I have learned to adapt all sorts of recipes to gluten free. Saturday I went to a dinner at a friends. She made a pot of vegetarian gluten free chili, I made a nice roasted beet and goat cheese salad and I brought some gluten free french bread (you have to look at bread differently once you go gluten free). Although the gluten-free french bread was flatish it had way better flavour than the baguette someone else had brought (or so I was told) and my bread was the first to go. I had a potluck end of season party for my daughters soccer team (I'm the manager), I made some really nice appies (goat cheese wrapped around a grape and rolled in nuts, ponzu shrimp - major yum and endive cups with goat cheese,red onion, toasted pecans and chopped dried cherries from the farmers market with a nice tarragon vinegarette). I also made a really nice gluten-free chocolate cake. There were other gluten cakes that were brought and they had to take it back home with them because everyone liked my gluten-free chocolate cake the best (I'm pretty sure I copy and pasted it from the baking section of this site). Once you get over the overwhelmed stage, you'll be able to move forward.

I also have alot of pain issues (this is also hard on my hubby) but a significant amount of my pain and fatigue reduced when I went gluten free. I'm hoping that more is to follow (I also have a diagnosis of fibromyalgia).

Be nice to yourself during this time. This is an overwhelming bit of news and making you home safe is a process. Just work one step at a time and it will all get easier to handle. Good luck.

Share this post


Link to post
Share on other sites

Join eNewsletter

Roxie, I made a delicious lunch for eight people today, corn tortillas with various fillings, and Black Forest cake for dessert. All gluten-free, of course.

Only one other person other than me eats gluten-free (my youngest daughter, the others are still in denial, even though they have symptoms), but they all thought that my cake was to die for! Everybody loved the food.

Eliminating gluten from your diet doesn't mean you will be deprived of anything. After you get the hang of the gluten-free diet and feel well, it won't be a big deal.

By the way, one of my celiac disease symptoms was a debilitating backache (which comes back when glutened). My back before eliminating gluten was so bad that I could hardly move. Within days of going gluten-free my back started getting better.

I hope that your back will improve soon. I am sure you would agree that just getting rid of that terrible back pain will be worth sticking to a gluten-free diet!

I would love to have your recipe for Black Forest Cake.

Share this post


Link to post
Share on other sites

Join eNewsletter

Everyone is giving great advice. It gets easier to deal with. The first few years on my diet, I TOTALLY felt like you do, but, hang in there! You need to get the rest of the family to eat "your" food too, in case the kids need to go on the diet one day, it won't be such a big adjustment!

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter