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Falling Off The Gluten-Free Wagon

kare101

By kare101
in Coping with Celiac Disease

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acaligal Newbie
acaligal
Posted

I feel your pain. This is week 3 for me gluten free and I get so tempted to cheat. At first I was terrified of going gluten free, but once I did some research, its gotten easier and less expensive.

Here's a few things I've found to be quick and easy meals:

For breakfast: Chex with mixed nuts and dried fruit (easy on the go), cream of buckwheat, or yogurt and fruit smoothie

Snacks: flavored rice cake with peanut butter, apples and cheese, carrots with hummus

Lunch: grilled sausage with grilled veggies, meat and cheese wrapped in corn tortillas

For dinner: grilled fish or chicken and rice or potatoes.

I've had the hardest time with bread. UDI is pretty good gluten free bread. Its a little dry but tastes so much better when toasted or used for paninis. I also ordered some almond flour online and I'm experimenting baking my own breads.

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AKcollegestudent Apprentice
AKcollegestudent
Posted

I feel your pain. This is week 3 for me gluten free and I get so tempted to cheat. At first I was terrified of going gluten free, but once I did some research, its gotten easier and less expensive.

Here's a few things I've found to be quick and easy meals:

For breakfast: Chex with mixed nuts and dried fruit (easy on the go), cream of buckwheat, or yogurt and fruit smoothie

Snacks: flavored rice cake with peanut butter, apples and cheese, carrots with hummus

Lunch: grilled sausage with grilled veggies, meat and cheese wrapped in corn tortillas

For dinner: grilled fish or chicken and rice or potatoes.

Just going to caution you: I know myself and others on the board have had CC reactions to Chex, and many dried fruits are processed in places that process wheat. And Lundberg is one of the few rice cakes I haven't had CC (or more severe) reactions to, especially when it comes to flavored. And, as I learned the hard way, watch out for the fillers in many brands of sausage--they often contain wheat.

(Not saying that these aren't all good ideas, just be careful.)

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lbv6684 Rookie
lbv6684
Posted

:rolleyes:That first week or two for me was spent in a panic state. I was panicked over what I couldn't eat. I am only in week 6 but have already made some realizations. I really had to try to spend time thinking about WHY this was such a big problem for me, after all it's only food right?!

For each of us food has different meanings. For some people food is used (as it should be) to keep them alive, without it they would die for obvious reasons. That being said gluten free living could be easy. For most people, me included, food is joy. Food is used to show love, to feel love. Most of us gather around some form of a community table (even in the most remote regions of the world). Humans have for the most part lost prespective on the fact that we just need to feed ourselves for energy, and made food almost worthy of Godly status. Take a few minutes today to realize this when you watch television, read a magazine, or drive by a billboard. I am trying to learn to put less emphasis on what I can't eat, and more emphasis on other things in my life that I CAN do. Once you start to realize how powerless food is over you, I think things become easier.

I have actually developed a taste aversion to some foods that contain gluten. Sort of like the first time you indulged in too much alcohol and got ill (its been 28 years since I drank that Southern Comfort and darn it I still shudder at the thought). Glutenous (is there such a spelling) foods have actually become that for me. I don't want to be sick, and so the illness outweighs the comfort of the food (that inanimate object that has no control over you!).

You can do this Kare. Use all of the info you get here, even the stuff that you find hurtful to help you rise above this. We are fortunate to have such an opportunity to even be able to read this!Its difficult, but do-able for sure! Everyone be well! Peace to all!

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kare101 Newbie
kare101
  • Author
Posted

:rolleyes:That first week or two for me was spent in a panic state. I was panicked over what I couldn't eat. I am only in week 6 but have already made some realizations. I really had to try to spend time thinking about WHY this was such a big problem for me, after all it's only food right?!

For each of us food has different meanings. For some people food is used (as it should be) to keep them alive, without it they would die for obvious reasons. That being said gluten free living could be easy. For most people, me included, food is joy. Food is used to show love, to feel love. Most of us gather around some form of a community table (even in the most remote regions of the world). Humans have for the most part lost prespective on the fact that we just need to feed ourselves for energy, and made food almost worthy of Godly status. Take a few minutes today to realize this when you watch television, read a magazine, or drive by a billboard. I am trying to learn to put less emphasis on what I can't eat, and more emphasis on other things in my life that I CAN do. Once you start to realize how powerless food is over you, I think things become easier.

I have actually developed a taste aversion to some foods that contain gluten. Sort of like the first time you indulged in too much alcohol and got ill (its been 28 years since I drank that Southern Comfort and darn it I still shudder at the thought). Glutenous (is there such a spelling) foods have actually become that for me. I don't want to be sick, and so the illness outweighs the comfort of the food (that inanimate object that has no control over you!).

You can do this Kare. Use all of the info you get here, even the stuff that you find hurtful to help you rise above this. We are fortunate to have such an opportunity to even be able to read this!Its difficult, but do-able for sure! Everyone be well! Peace to all!

More good advice and kind support....All of you supportive, helpful people who've commented on this subject have really meant a lot to me. I think I've gained strength, and a new way of looking at things. Not that it's always going to be easy, but I think it will get easier and easier. My sincere appreciation to all!:)

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Lgood22573 Rookie
Lgood22573
Posted

You are not alone. I think about eating the wrong foods ALL THE TIME. I have a young child, and I end up at some pot luck function (where everyone brings a dish or food) at least once a week. I just watch (starving) and politely say "I'm not hungry". It's truly awful, but it's so much worse to be sick. I broke down last week after 4 strict months of being gluten free. I kept watching all those kids eat all that junk, and we had to take some home. After everyone went to bed, I got out the bag of sunchips and ate 4 of them. Immediately, I was overwhelmed with panic wondering what would happen. I ended up hugging the toilet from both ends all night long. I will never do that again- NEVER. For each one of us, it is a struggle depending where you are on your journey. I'm sorry you are discouraged. I hope you get some help and support. For me, I still miss the food even though I know what it does to me. Eventually, I will come to terms with it. We all have to.

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RideAllWays Enthusiast
RideAllWays
Posted

Been gluten free for a year now, flawlessly. It was hard at first, I hesitated at putting ANYTHING in my mouth. You'll start to get more adventurous and creative in your cooking. Are rice cakes available to you? They saved me through the first few months. Rice cakes with peanut butter, tuna, goat cheese, cucumber, whatever else you can think of...

Yet recently I have been so close, much too close, to eating a McChicken from McDonald's. The only thing stopping me is that I know I will be so sick and it's just not worth it. I'm sure every Celiac has thought about cheating, whether or not we actually do it is a different story.

A note on the rice crispies: you said you weren't sure about them, but the killer ingredient is MALT. This is a source of gluten that I didn't know about at the start of my gluten-free adventure. IT WILL GET EASIER, I promise, but it probably will never be easy to watch other people eat yummy and convenient things while we cannot. We just have to eat our own yummy things and figure out new favorites!. My favorite saying is:

Never concentrate on what you CAN'T eat, only think of the many things you CAN eat.

It will get better! :)

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sandsurfgirl Collaborator
sandsurfgirl
Posted

Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

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RideAllWays Enthusiast
RideAllWays
Posted

Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

I have an amazing sugar cookie recipe if you want it. I may have posted it here around Christmas time, but if you can't find it email me at d.hoholuk@hotmail.com!

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kareng Grand Master
kareng
Posted

I have been gluten-free about 5 weeks. The first few days I tried some of the gluten-free products like Udis bread, pasta & pizza crust. Hated them! It was too close to when I had the "real" versions. This past week tried them again & liked them. Wasn't as easy to compare them in my taste memory. Some are better then others & I have found that its sometimes personal preferences. Still don't like Quinoa pasta but did like rice pasta.

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serenajane Apprentice
serenajane
Posted

Eating gluten-free is a choice. If a bowl of cereal is worth feeling as you do, then how can any of us change your mind?

I must say at first glance the comment seems a bit lacking in the compassion area.

However it is really hard to know how someone's tone is intended with typed words.

I don't think they intended to discourage or to be hurtful.

For me I was sad when my diagnosis came about.

BUT I know that I can choose to live a better life doing it gluten free or I can be in pain and uncomfortable all the time.

Celiac disease has put a damper on my relationship with my husband 5+ years before diagnosis. When the bathroom is the first thing you visit in the morning and the last thing in the evening it kinda kills the romance.

It looks to me the person who "feel off the wagon" felt like she had no food options available. That is an awful feeling.

This has been a great place for me to vent my gluten frustrations please feel free to continue as well we are all in the same boat.

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serenajane Apprentice
serenajane
Posted

Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

I had gluten free snicker doodles they were soft and they were yummy. I think made by enjoy life. I found them in the bread and cookie isle of my local grocery store

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BackTalk Rookie
BackTalk
Posted

Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

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Yoshi Newbie
Yoshi
Posted

The gluten-free lifestyle isn't easy, especially when you live in a home with other people who don't have to eat the way you do. Several years ago, when I was diagnosed with Crohns, the doctor told me I could also be gluten-intolerant. I didn't pay a lot of attention to that, as I felt dealing with Crohns was hard enough. I attributed my nearly-constant digestive problems to the Crohns. I tried, briefly, to cut out the wheat, not fully understanding there was more to it. I felt it was too hard and quit trying. Fast forward to 3 years ago. My gall bladder abscessed and ruptured. The area of my liver around the gall bladder had started developing abscesses. I was extremely ill and almost died. After I got out of the hospital, even though I still didn't think about the possibility of all of that being caused by gluten intolerance, I was very careful with my diet, leaning more towards low-carb and not eating wheat or other grains. Gradually, though, I started slipping back into old habits and eating wheat-based products and having health problems that just kept getting worse.

A little over a month ago, I tested positive for gluten intolerance. I took it serious. For the first 3 weeks, I felt fantastic. Then, I started not feeling so good, again. It's hard to stick with this diet when you're feeling lousy and wanting comfort food, and you haven't developed a taste yet for new comfort foods. To make things worse, I broke a back molar and can't get into the dentist for a couple of weeks. It hurts a lot, and I'm feeling really vulnerable and wanting to call it quits -- with the gluten-free stuff and the Crohns and the diabetes (yes, that's also a result of the infection from 3 years ago). I want to give up, but I can't. I have a developmentally disabled son who needs me, and I don't want to end up sick and in the hospital like 3 years ago or dead. That's why I take my insulin every day, even though I hate needles with a passion. That's why I stay away from gluten, even though I could really go for a McDonalds fish sandwich right now.

Hang tough. Falling off the wagon hurts a lot more than staying on it.

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Shannonlass Apprentice
Shannonlass
Posted

I completely understand that for some people one fall off the wagon leads to staying off the wagon for months/years as in going back to eating gluten-containing products permanently. Surely there are some of you out there that had a relapse, one incident where you had the donut or the carrot cake or the whatever just because you wanted it really badly and right away got back on the gluten-free bandwagon???? Or is it all doom and gloom. One mistake and that's it, back eating gluten permanently? I understand it's preferable to stay gluten-free rather than give yourself that emotional (not to mention physical) hardship.

My nan was a smoker for years. She gave up smoking when my Grandfather developed angina but once in a blue moon when her sister, a smoker visited she'd light up and have a couple. Then off them again for another few years. I always wondered at her restraint not to go back on them. Sometimes I wonder if I'd be able to do the same with gluten (not that I'm planning it or anything!!!)

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twe0708 Community Regular
twe0708
Posted

I've been gluten free for a week, and I already slipped. I love cold cereal with milk, and I miss it so much! Last night, I ate rice krispies. I'm pretty sure it's not gluten free, but I figured since it's made from rice, it wouldn't be as bad as some others. I have terrible insomnia right now, and late at night is the hardest time to stay on the diet. I don't know how I'm going to do this the rest of my life. It's especially hard because here in Saudi Arabia there's no gluten free food available, and I haven't ordered anything online yet. I'm so frustrated. Just starting to have a reaction to what I ate last night. It's been about 18 hrs, and I'm starting to have face flushing, hives, and what I think is kidney pain. I started getting it lately when I'm sick. It's so not worth it! Please help if you have any suggestions for kicking gluten for good...

Also, I've read a lot about people having problems with corn. Last night, I ate some popcorn with just salt at the movies, and I started coughing a lot. I always do, and I always thought it was just because of the husks in the popcorn, but now I'm wondering if I have a problem with corn. Any thoughts?

If you need cereal then have Fruity Pebbles or Coco Pebbles. Just bc you need to be gluten free doesn't mean you need special gluten free foods only. Think of all the really good things you like (like ice cream) and keep those in the house. You can have black beans/kidney beans with brown rice or white rice and tomatoes and cheese. The is good gluten free pasta out there that you can make with turkey meat and spaghetti sauce that taste really good. Pistachios are nice snack but watch how much you eat. I started keeping sugar free jello in the fridge and choch. dove candies. Pamela's pancake mix makes a great Gluten Free pancake. I hear what you are saying and it's hard. sometimes I just want to fold and enjoy a good old fashion cheeseburger with the bun. We went to P.F. Changes the other night and it was hard for me to turn down the fried green beans. Fajitas are also good to make for lunch and dinner. Buy a good iron skillet. Good luck!

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twe0708 Community Regular
twe0708
Posted

Today my kids had those super soft frosted sugar cookies from the grocery store. Those are one of my FAVORITE indulgences. I just sat there smelling them. It was so tempting, but then I remember the way I feel and the awful GI symptoms and then smelling them is enough. Now I'm on a quest to find a good gluten free sugar cookie recipe and create something similar myself.

Try making your own sugar cookies. I made some with my daughters over Christmas and they were so good. Couldn't even tell they were gluten-free. I will send the recipe today when I get home.

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kare101 Newbie
kare101
  • Author
Posted

Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

So sorry to hear what you've gone through, and I appreciate your sharing. Don't worry. I jumped right back on the wagon, and haven't gone off since. Don't plan to ever--even more now that I've heard your story, and another. Thanks. Take care of yourself!

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BackTalk Rookie
BackTalk
Posted

So sorry to hear what you've gone through, and I appreciate your sharing. Don't worry. I jumped right back on the wagon, and haven't gone off since. Don't plan to ever--even more now that I've heard your story, and another. Thanks. Take care of yourself!

Hang in there. You will be fine.

Good luck

Jess

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kareng Grand Master
kareng
Posted

Try making your own sugar cookies. I made some with my daughters over Christmas and they were so good. Couldn't even tell they were gluten-free. I will send the recipe today when I get home.

Me too! Me too!

Please?

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GFinDC Veteran
GFinDC
Posted

Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

Hi Jess (Backtalk),

Thanks for posting your story. That's one heck of a hard lesson to learn. Hopefully others who are struggling with commitment to the gluten-free diet will get motivation from your story. There have been a number of posters who find it hard to stick to the diet for various reasons. But in the end run the reason doesn't matter, when the result is pain and suffering. I disagree about them enjoying a bag on their side though. My younger brother had a colostomy and bowel re-section years ago and he didn't enjoy it at all. Another thing people might want to do is read some of the signature lines of posters on the forum. Some of them have other autoimmune conditions brought on by celiac before they were diagnosed.

I hope you get better soon Jess!

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BackTalk Rookie
BackTalk
Posted

kare101- I just re read my reply to your post, and I must apologize. I really went after you didn't I ? For that I'm sorry. There is nothing easy about this staying gluten-free thing. I was "felony stupid" when I stopped the gluten-free diet. To show how hard staying gluten-free is, when I gave up I was not only not feeling well but I got a case Celiac Dermatitis so bad on my butt I couldn't sit. Went to the doctor to have it looked at and treated and lied my brains out telling him I was doing great with the diet. To this day I still need to use a steroid cream to keep it under control. There are so many things that you can go through and things that can happen. It's not worth back sliding even once. Damn it's hard enough for us to just find something that isn't cross contaminated. Anyway, sorry for coming down so hard on you. You WILL be fine and you will make it.Good Luck and stay Tuff.My Best, Jess

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      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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