Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

I Can't Seem To Make Myself Do It.....


BriLee

Recommended Posts

BriLee Newbie

Hello, I am new here so please don't mind if I do something silly like post this twice or something. :)

I have been struggling with intense stomach pains for over a year and a half now, went from doctor to doctor being told that I was just over sensitive and should just eat more fiber. Finally a few months ago I found a new doctor who actually believed me and decided to do some tests. I have the gene for celiacs disease but am low risk and my biopsy came back negative so technically right now I do not have it. My doctor says that I have "sub-clinical" celiac disease because I have all the symptoms but don't technically have it, but she is deeming it IBS with gluten as a trigger.

I have been trying and trying to be gluten free for at least 2 months now, and I just cannot seem to force myself to do it even though it makes me feel so much better. I do great for a short period of time and then I come across a cookie. A deliciously store bought perfectly not burnt cookie. What am I to do? Every time I go to my boyfriend's house there is some kind of deliciously gluten filled treat, and I think well I don't technically have celiacs disease, so just eating one shouldn't hurt me long term.

Food has always been a huge part of my life, I went to school for nutrition for a while, then wanted to be a chef, still love to cook but only have time to do it occasionally. Even while I knew it was the food that was hurting me I used anything flavorful to be happy. Back then every food that I ate seemed to bother me, so I gorged myself in order to make it worth it. Now I am having serious issues because I am craving all kind of food like you would not believe, and I find myself getting home from work and binging on junk food that just makes me feel terrible.

Everyone keeps saying, well why would you eat that stuff, your just hurting yourself, just walk away from it. But they don't understand, they aren't being told what they can and can't eat, they aren't having anything taken away from them. I hope that eventually I will become used to this diet, but until then I have been able to keep my pain to a minimum but every other symptom that I had before is still here and bothering me because of it.

Wow, that was long. Point is, I have been lingering around on this site for a few days and just reading some of your posts makes me feel so much less alone. So I wanted to thank you all for sharing your experiences and allowing me to get that all off my chest, even if it was super long.

Did anyone else have problems like these? Any kind of helpful tips, advise, telling me I am crazy, I just need to figure out a way to make this work.

Thanks for Listening! :)

-Bri

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ahorsesoul Enthusiast

Bri,

Here is the thing. You are just a little bit celiac. Same as being just a little bit pregnant. You aren't showing yet. You can continue to eat gluten until you have noticeable damage to the lining of your intestines and develop other diseases associated with celiac disease or you can decide that your health and well being is more important.

I personally can eat whatever I want to eat. Unfortunately, when I eat anything with gluten I get sick and feel horrible. I decided not to eat items with gluten. I ate Italian sausage with roasted peppers on yummy french bread for supper. And I'm going to be making chocolate chip cookies later. All of these things are gluten free. There are many companies making good tasting gluten free items to replace those that make us sick. Yes, it is hard at first because we all think about what we can not have instead of what we can eat.

It is a choice to be healthy or not. I know you can do this!!!!

Link to comment
Share on other sites
kareng Grand Master

I actually didn't have issues with bread or store bought cookies so much cause I didn't like them that much before.. What I don't like is the lack of spontaneity. - I'm hungry let's get something. Don't have anything I want to eat in the house, let's go out.

I think you are feeling like you are being told what to eat and rebelling. You like to cook. There are lots of things to eat, you just have to make them. As you go along, you will see that you are really very unlimited, at least at home. Check out gluten-free cookbooks from the library. If you like them you can buy them or just copy a few recipes. Lots of recipes on this site and others. Cooking with a boyfriend can be sexy. Get him some Dove dark chocolate or Fritos to have at his house instead of what you shouldn't have.

My teen boys are not Celiac (yet). We eat lots of gluten-free meals and unless they ask, they don't know or care. They are enjoying trying new cookie recipes with honest discussion of what to change or keep. gluten-free PB choc chip cookies were so good the racoon at camp ate through the cooler to get them.

Link to comment
Share on other sites
GlutenFreeManna Rising Star

Hello, I am new here so please don't mind if I do something silly like post this twice or something. :)

I have been struggling with intense stomach pains for over a year and a half now, went from doctor to doctor being told that I was just over sensitive and should just eat more fiber. Finally a few months ago I found a new doctor who actually believed me and decided to do some tests. I have the gene for celiacs disease but am low risk and my biopsy came back negative so technically right now I do not have it. My doctor says that I have "sub-clinical" celiac disease because I have all the symptoms but don't technically have it, but she is deeming it IBS with gluten as a trigger.

I have been trying and trying to be gluten free for at least 2 months now, and I just cannot seem to force myself to do it even though it makes me feel so much better. I do great for a short period of time and then I come across a cookie. A deliciously store bought perfectly not burnt cookie. What am I to do? Every time I go to my boyfriend's house there is some kind of deliciously gluten filled treat, and I think well I don't technically have celiacs disease, so just eating one shouldn't hurt me long term.

Food has always been a huge part of my life, I went to school for nutrition for a while, then wanted to be a chef, still love to cook but only have time to do it occasionally. Even while I knew it was the food that was hurting me I used anything flavorful to be happy. Back then every food that I ate seemed to bother me, so I gorged myself in order to make it worth it. Now I am having serious issues because I am craving all kind of food like you would not believe, and I find myself getting home from work and binging on junk food that just makes me feel terrible.

Everyone keeps saying, well why would you eat that stuff, your just hurting yourself, just walk away from it. But they don't understand, they aren't being told what they can and can't eat, they aren't having anything taken away from them. I hope that eventually I will become used to this diet, but until then I have been able to keep my pain to a minimum but every other symptom that I had before is still here and bothering me because of it.

Wow, that was long. Point is, I have been lingering around on this site for a few days and just reading some of your posts makes me feel so much less alone. So I wanted to thank you all for sharing your experiences and allowing me to get that all off my chest, even if it was super long.

Did anyone else have problems like these? Any kind of helpful tips, advise, telling me I am crazy, I just need to figure out a way to make this work.

Thanks for Listening! :)

-Bri

I can't say I had difficulty going gluten free once I figured out that it was my problem, but my process of getting to that conclusion was a lot different than you. My doctors were not willing to consider celiac. After being tested for many, many other things (all negative) and being so sick I was practically bed-ridden I decided to try an elimination diet. So for me, this was my choice--my taking charge of my health. I did go through a period of grief and denial once I figured out that gluten was my problem. All it took for me, however, was one time eating gluten on purpose to realize I could never go back to gluten. Feel free to mourn the loss of your favorite gluten comfort foods, but when you are done try to focus on the plus sides of this diagnosis. One plus is that you have caught this before it lead to more serious health issues. By going gluten free now you may avoid arthritis, thyroid disease, reproductive issues, liver disease, kidney disease, and cancer, just to name a few conditions associated with celiac disease. Empower yourself with information. Read as much as you can about the health issues related to celiac's disease. And maybe you will be less likely to want the stuff that makes you sick. Another plus side I see to your situation: As a one-time aspiring chef you have a great opportunity to learn how to make gluten-free foods. You may even find new ways of cooking of baking gluten free that would help others struggling to go gluten free. Food can still be a huge part of your life. It will just be different food. Food that is safe for you and not going to make you sick. You may even find new favorite comfort foods that you never would have tried if you didn't have to go gluten free.

Link to comment
Share on other sites
butterfl8 Rookie

Here's a little of my story. I thought I had an ulcer. It would come back whenever I was stressed. And so to 'tame' the stomach acid, I would chow down on bagels. Umm, and cookies! I was stressed! I needed them!! It was theraputic. :rolleyes: Then I started getting REALLY sick--like the pain was so bad (from an additional stomach virus) that I was taking percocet several times a day. For a month. Then a trip to the emergency room. Then a month off work, while we figured out what was wrong.

I went gluten free with a fight. The night before my endoscopy I had my last peice of pizza. It came back up about 90 minutes later. I accepted. You could wait until then, or you could do as AHorseSoul suggested, and be truly gluten free. Then you can start to feel better. And trust me, it feels better than trips to the ER, several dr's, and generally feeling like, well, you know. :blink:

I promise, GLUTEN IS EVIL. well, that's what we say in this house. And that line about an ounce of prevention. I travel with food--larabars in my purse, travel food in my car. And plans. We will support you here Bri, but we don't mess with poison! :P

-Daisy

Link to comment
Share on other sites
T.H. Community Regular

Oh hon, I'm sorry to hear it's been so hard for you!

I can really, really sympathize. For me, gluten wasn't what I couldn't give up. It was the sugarcane that I found out I was allergic to after I went gluten free. At first, it would make my throat swell up, so it was easy to avoid, but as soon as the reactions mellowed?

I want it all the time. Every time I see something with sugarcane, smell it, think about it. I know it makes me feel sick as a dog, and I still want it. Even when my stomach is actually hurting from the last time! Every time I eat, I think about having something with sugar instead. And so I've ended up cheating on the sugar part a few times, and yeah, every time I regret it. and every time my hubby says: what are you doing? you know this messes you up!

And it's been so impossibly hard to stop. It's like a drug addiction, at least it feels like it. I dream about the taste, even! But recently, it's been easier to avoid, so...some things that worked for me, in case they help?

1. I chucked it all. There is nothing in my house that has sugar, so even when I'm tempted, I have to do a lot more work to acquire the 'bad' food, so I can usually resist the temptation by then.

2. I asked for help. Told friends and family that I was having trouble, so if they were having something with sugarcane, I was just going to have to step out of the room until I could get some control, and I'd appreciate if they could help me a little.

3. I put notes up EVERYWHERE. It's pretty silly, but it helped if I had these notes reminding me WHY I was keeping away from the bad food, near where I tend to EAT the bad food. 'your health is worth it',' the pain is NOT worth eating this', 'it's no better than a bowl of glass. this will hurt you, dummy.' That sort of thing. My hubby sniggered at first, but it helps, so I kept them up.

And then...just a lot of other foods to distract me from the food I want. And it's still hard, but you can do it! :-)

Hello, I am new here so please don't mind if I do something silly like post this twice or something. :)

I have been struggling with intense stomach pains for over a year and a half now, went from doctor to doctor being told that I was just over sensitive and should just eat more fiber. Finally a few months ago I found a new doctor who actually believed me and decided to do some tests. I have the gene for celiacs disease but am low risk and my biopsy came back negative so technically right now I do not have it. My doctor says that I have "sub-clinical" celiac disease because I have all the symptoms but don't technically have it, but she is deeming it IBS with gluten as a trigger.

I have been trying and trying to be gluten free for at least 2 months now, and I just cannot seem to force myself to do it even though it makes me feel so much better. I do great for a short period of time and then I come across a cookie. A deliciously store bought perfectly not burnt cookie. What am I to do? Every time I go to my boyfriend's house there is some kind of deliciously gluten filled treat, and I think well I don't technically have celiacs disease, so just eating one shouldn't hurt me long term.

Food has always been a huge part of my life, I went to school for nutrition for a while, then wanted to be a chef, still love to cook but only have time to do it occasionally. Even while I knew it was the food that was hurting me I used anything flavorful to be happy. Back then every food that I ate seemed to bother me, so I gorged myself in order to make it worth it. Now I am having serious issues because I am craving all kind of food like you would not believe, and I find myself getting home from work and binging on junk food that just makes me feel terrible.

Everyone keeps saying, well why would you eat that stuff, your just hurting yourself, just walk away from it. But they don't understand, they aren't being told what they can and can't eat, they aren't having anything taken away from them. I hope that eventually I will become used to this diet, but until then I have been able to keep my pain to a minimum but every other symptom that I had before is still here and bothering me because of it.

Wow, that was long. Point is, I have been lingering around on this site for a few days and just reading some of your posts makes me feel so much less alone. So I wanted to thank you all for sharing your experiences and allowing me to get that all off my chest, even if it was super long.

Did anyone else have problems like these? Any kind of helpful tips, advise, telling me I am crazy, I just need to figure out a way to make this work.

Thanks for Listening! :)

-Bri

Link to comment
Share on other sites
tictax707 Apprentice

Bri,

I do agree with the gist of what many have said so far, in that YOU have to make the conscious decision to go gluten free. What it takes to get you to that point... well, you and fate will have that sorted one way or another. I would like to add, that the honesty you have with yourself is fantastic. I think that part of what you are feeling is a natural reaction to the [initially] overwhelming restriction of this disease. Like someone else said, it's rebellion.

I think that since food is/was such a big part of your life (referring to maybe being a chef), that it's making your reactions a bit more complicated and harder to sort out. It may be partly you simply just reacting to the diagnosis, but talking to someone professionally about it I think would help immensely, mainly because you are ahead of the game because of your honesty about your feelings and why you do the things you do. I wish I had talked to a pro when I was first diagnosed.

But on the up side, you DO get used to the diet. It takes work and plenty of research and it won't always be easy, but there are a lot of tools out there to help you out. There are apps for the iphone that can tell you what things are gluten free in your ordinary grocery store, and at places like Mother's, Sprouts, and Whole Foods that carry many of the things that we need to cook and bake gluten free.

Take a deep breath... find your reset point. Find that spot where you don't feel like crap and which foods your body can really actually handle. I know what it's like to feel like total crap from food, and I can tell you that it won't always be that way. Realize that it will take time, but you really CAN do it. :D

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I know it's hard to stick to the diet but you're playing with fire. Celiac disease can progress and the longer you eat gluten, the worse the autoimmunity gets. You can develop worse stomach problems, neuropathy from autoimmunity and vitamin deficiencies, autoimmune thyroid disease, anemia, and osteoporosis later in life from calcium deficiency. Google "refractory celiac disease" if you want to see the bad extreme of what happens to some celiacs who continue to eat gluten.

I can't say I have trouble with the diet, but I've had allergies since childhood. Having foods I can't eat is "normal", as is not having cats, feather pillows, and a lot of other stuff. That said, I can see where it would be really hard if you have a passion for cooking and nutrition.

Maybe my favorite blog will give you some inspiration and show you that the diet does not have to be limiting. The blogger is a French pastry chef and food photographer and she bakes the most amazing gluten-free things for her celiac husband.

Open Original Shared Link

Link to comment
Share on other sites
ravenwoodglass Mentor

"And it's been so impossibly hard to stop. It's like a drug addiction, at least it feels like it"

This snippet from TH's post says a great deal.

For some of us there is a addictive component to our dealing with gluten. It is very much like having an addiction to a drug. Gluten can have a reaction in our brain that literally makes us addicted to it. Just as an alcoholic can not have 'just one drink' you can't have 'just one cookie'.

You need to fight that addiction with all the strength you have. Your cravings will stop after you have been gluten free for a bit and are feeling better. There are a lot of good gluten free foods available and more are coming out every day. Made sure you have gluten free alternatives with you at all times. When those poison filled cookies are in front of your face pull out your alternative goodie and have that instead. Since you used to be chef and enjoy cooking challenge yourself to learn to make your favorite items gluten-free. Check out the recipe section and try some of the ideas others have. I also used to be a chef and I found it fun to take my old recipe books and rewrite the recipes as gluten free. That was just as much fun as it used to be to go through those books and tweek the recipes from 8 servings to 80.

It is hard at first, especially for those of us that are addicted to it. But once you get past the hump and are feeling better it does get easier.

Link to comment
Share on other sites
luvs2eat Collaborator

I didn't have that much trouble going gluten free... I liked to cook and bake and finding GOOD gluten-free alternatives hasn't been as hard as I thought it would be. That said, I don't bake much anymore, except for weekly bread, because I can't reconcile myself to the different tastes and textures of gluten-free baking rather than wheat flour baking, but I don't NEED cookies or cakes anyhow!

But, recently discovering that it may be dairy that's causing glutened-type symptoms is doing me in!! There's NO alternative to good cheese... none. So, while I understand your dilemma... we don't really have a choice, do we? Not unless we're prepared to feel like crap.

Link to comment
Share on other sites
Northern Celiac Newbie

Bri, you know how much better you feel eating gluten free, so ask yourself, "do I want to be sick or feel better?"

I had no problem going gluten free but it took a little while(6 months) to feel better because I was so ill. I stand 6'5" and my weight had fallen below 130 lbs. best of luck

Link to comment
Share on other sites
kwylee Apprentice

I was 46 when I first started feeling "badly" more and more. But I ate gluten for many, many years, before I realized that something had changed in my body. I'd give anything to have known this as a younger person. Now at 54 and positively diagnosed in the last 5 weeks, there is no doubt that gluten was doing me harm.

I am thrilled to finally know why I felt worse and worse with each passing year. I know that I will, in time, find wonderful things to eat that do not include the things that were silently (and in the last few years, not so silently), killing me.

When you ingest something that makes your body react, it is giving you a strong signal to please stop. And your body sees this particular protein as a drug. SAY NO TO GLUTEN.

Link to comment
Share on other sites
ciavyn Contributor

I am just going to second what everyone else said, and share with you some advice I received regarding eating disorder issues (can't just have one issue, now, can I? Nooooo....) What is it you are getting from the foods you eat? For many of us, it's pleasure. And quite honestly, it should be! Eating and food are central to our lives, and it should be a pleasurable experience. But it shouldn't be replacing other things that give us pleasure. Often we give an item of food so much power, it controls us. (Raise your hand if you've been there before.) What happens is that because we get "some" pleasure from food, we demand that we get all pleasure from it. Rather than stepping back and saying...wait a minute, what is it I really want right now? We assume we want a yummy food, and just give in. Then we are out of control, because our body doesn't really want food, it wanted something else, and instead we are simply plugging the whole, rather than fixing it. So rather than focus on the foods you can't have, and insist that food meet all your pleasure needs, spend some time determining what you really want when you are tempted by the cookie. Is it power to choose? Then make a bunch of gluten-free items and keep them in the freezer. Is it intimacy? Spend some time with your SO or get a massage. Do something for yourself. Does that make sense? That was like a light bulb moment to me, and I think it applies to our frustrating journey with celiac's. :)

Link to comment
Share on other sites
BriLee Newbie

Thank you all for your encouraging words!

From what you have all said, I think my problem is that I have not accepted it yet. The fact that most of you had a relatively easy time going completely gluten free is honestly not what I was expecting. Knowing what I have been going through I just figured that it was a normal part of the process. Hearing your experiences I think maybe it is important that I go speak to a psychologist and figure out how to bring myself to acceptance.

I have definitely been broadening my gluten free choices but only to a certain degree. As I said before I love to cook, but right now I do not have the time. When this all started I was in college first living in a dorm off of cafeteria food (which was when it all started) and then in my own apartment when I had to make time to cook for myself every night and somehow stay on a very tight budget. I am still in college and am currently taking two online classes as well as working a full time exhausting job. I am very thankful that I was able to live with my parents this summer because my mother has been great about helping me to cook gluten free dinners and find new recipes to try.

Thinking on it more, I think most of my issues come from the social aspect of eating. When you are celebrating you eat, when you are with friends you eat, whenever you get together with someone the first thought is lets do lunch. Our society focuses so much on eating and if you cannot eat with everyone else then you are sometimes left out. With how busy I am with my intense major in school and studying I barely have time for a social life as it is, so to be left out of that even more is really difficult. So when I am around people who are eating cookies and talking around the kitchen table, I know it is possible for me to just talk and not eat, but it never seems like the best choice.

Hopefully soon I will be able to control my cravings and figure out how to live a wonderfully gluten free life. Until then, I thank you for your kind words and for listening to what I had to say. Many thoughts and feelings are held in when you don't think anyone will understand, so knowing that you have all had somewhat similar experiences is sort of a relief in a way.

-Bri

Link to comment
Share on other sites
butterfl8 Rookie

(((Hugs)))) I still hate the social food part. So I feel you there! Every time I turn around at work--it's something else with FOOD. Half the time I politely excuse myself, either by a "no, I can't eat safely there," or, I'll be busy then, but thanks for thinking of me!" The other half I have a drink and stay away from the food. Except the one time we were passing around peanuts. I realized those were safely 'pre-packaged,' and others' possibly glutened hands couldn't mess up my food!

But it is hard, and frustrating. So I go home, and fix myself something really good. And fast. Sometimes!

You can do it!! We can help!!!

-Daisy

Link to comment
Share on other sites
Monklady123 Collaborator

Bri, you are SO right about how our society revolves around food! (I haven't finished reading this thread yet so I apologize if I'm repeating anything others have said -- I started from the bottom and was working up, lol...) -- anyway, I work at a church and you can imagine how that goes. Potlucks, Sunday school breakfasts, treats brought in by the nice church ladies ;) -- etc. And meetings! We try to support the urban neighborhood around the church so we go to the local restaurants and sandwich places for lunch meetings. sigh...

And I can relate to the no-time-to-cook thing. I hate to cook. And I'm the cook in the family (my husband works longer hours that I do, although he will cook on the weekends). But, thankfully a meal of meat, starch such as potato or rice, and a vegetable is gluten-free.

I think after awhile it will get better. (I've only been on this gluten-free diet for a few weeks.) I did have a moment in the store the other day when I passed the bakery section and saw all those crusty loaves right out of the oven. sigh.. :ph34r: But... if I just think about how awful I feel if I eat gluten I usually get over it! lol...

So... hang in there and think about your health and how your insides are healing every day that you're off gluten. :)

Link to comment
Share on other sites
i-geek Rookie

I have to admit that I didn't have too much trouble giving up gluten itself (don't have a big sweet tooth, usually felt awful after eating too many carb-y things even before knowing why). I completely understand and sympathize about the convenience issues, though. I'm a grad student. My husband and I live in the next county over from my university, so on top of spending anywhere from 8-10 hours in lab, I spend two hours commuting each day. I don't have much free time and a lot of my evening time goes to food prep. I don't have another choice if I want to stay healthy.

During the year, our grad program provides weekly lunch for us during student seminar. It's always, always pizza or sandwiches. Optional sides are pretzels or cookies. Sometimes I'm invited to have lunch with a guest speaker. The catered lunches are ALWAYS sandwiches and cookies. I just bring my own lunch to these events and when people ask why, I take the opportunity to educate them, but it sure would be nice not to be the odd one out who's trying to sneak out to heat up my lunch and having everyone watch me eat it.

You're not alone here, believe me. Like I said, even those of us who don't really miss gluten foods miss not having to think and worry about everything we eat. But you need to ask yourself- is what you're doing now worth the damage you're causing to your health? After 15 years of health problems and not having doctors take me seriously enough to run proper tests or follow-ups, I decided that I would take the inconvenience in the hopes of maybe finally feeling better. I have no regrets. Accidental glutenings notwithstanding, I've felt better in the past 6 months of being gluten-free than I have in a really long time (maybe ever).

Link to comment
Share on other sites
chasbari Apprentice

I think, perhaps, some of us sound like we had an easier time giving up gluten than it actually was. I am sure that had I been diagnosed much closer to the onset od my disease 30 or more years ago I would have been in massive denial and it would have been brutally difficult... much like your experience now. The reason it was "easy" for me to give up gluten and go on a radical grain free gluten free nightshade free diet is because I had a proverbial gun to my head by the time the diagnosis was made. The complications of a lifetime of damage caused by undiagnosed untreated celiac had me to the point that I was truly ready to die. I could barely walk or move. I could not think straight anymore, I was in constant pain and I would just lie on the couch staring at the ceiling wondering when it would all be over. I couldn't get off gluten fast enough or thoroughly enough. The actual process was very brutal though and it is a withdrawal of major proportions. My family had to be very patient with my mood swings, my begging for food when I couldn't shovel enough calories in to stave off the constant gnawing hunger that a healing body throws at you. It was months of irrational behavior on my part but I knew I had no choice as I found that within forty eight hours of going totally grain free I could actually start walking again and I could almost close my hands in a fist for the first time in years. I knew I was now experiencing the pain of an abused body finally healing. So, on one level it was very easy to give it up. At another level it was brutal and seemingly a long drawn out process. A year and a half in and there are still battles to fight but every one is well worth it as I have my life back. I wouldn't trade that for all the gold or gluten in the world.

Link to comment
Share on other sites
anabananakins Explorer

Bri, you'll get there. I'm sure! It's just hard being told what to do, I understand that. I'm the kind of person who runs out and binges on crap any time I'm told to eat healthy. But I've had no trouble with going gluten free and I think it has a lot to do with something someone said about gluten being poison and how you'd never ever have a little bit of arsenic. All the things that I know will never taste right - croisants - I now picture as being dusted with poison and I'm not tempted. It really helps me. But the social side... yeah, I'm still not sure. I haven't really dealt with that yet. My friends are supportive, but I don't think they've really undersood it yet. Reading this forum really helps. Good luck and best wishes.

Link to comment
Share on other sites
gf-soph Apprentice

I have a lot of sympathy for where you are now. My GP first suspected celiac when I had been quite sick for a just few months. I had above normal blood antibodies, but a negative biopsy. I was told not to bother cutting out gluten, and I remember the huge sense of relief as I was well and truely addicted to bread. If I had looked into things a bit more at the time I'm sure I would have found this board and got a good dose of reality, but I was happy to believe what I was told.

I saw a new GP about a year later, I had been gettng sicker and sicker over that time to the point where I could only eat about 4 foods that wouldn't make me immediately sick (all of them gluten free, funnily enough!). By the time she told me that the gluten WAS making me sick, I was so desperate to feel better that I was totally committed to the diet. I grieved, I got angry and upset, but I never deliberately ate gluten. If I had been diagnosed when I wasn't as sick, I may have found it much harder to stick to the diet. I was so debilitated that I couldn't eat our or go to pubs or parties, so it's not like I was missing anything socially.

You've been given a lot of great advice already, which I totally agree with! I do think gluten is addictive for some people, and I tend to think that if you find yourself feeling an addictive pull to any type of food, it's probably bad for you. I am about to start a restrictive low chemical diet, including cutting out most treats and so many tasty healthy foods (tomatoes, avocadoes, berries, etc etc), and I am dreading it SO badly!

A psychology subject taught me a really useful metaphor for self control - it is like a muscle. It only has so much strength, but you can increase it over time. Being gluten-free may take up a big chunk of your self control strength, but with practice it will improve. Find the triggers that push your self control past your limits, and try to mitigate them. Try to plan as many good gluten-free meals and replacement foods as you can to remove temptation. Talk to your friends about what's going on - they may surprise you with support.

I found it really useful to keep a periodic list of symptoms, e.g. before going gluten free, after a couple of weeks, then updated every month or so. It helped me to see what was improving (as they can me really subtle things you don't expect), and to keep me motivated. Given you already know that you feel better when gluten-free, it may help you stay on track. Good luck!

Link to comment
Share on other sites
tarnalberry Community Regular

You're not being told what you can and can't have. You're not being forced to eat gluten free. As you state in your post - you do eat things with gluten in them occasionally, so you clearly have the capability to do it. The question is - is it worth the consequences?

Everything thing we do is essentially a choice. (Ok, involuntary muscle movement, like heartbeats, aren't a choice. Everything else is.) You have the choice to go to work (or school) each morning, or stay home. You have the choice to go out with friends dancing at night, or go visit family. You have the choice to eat a banana or a cinnamon roll. You have the choice to eat gluten free or not. The consequences for making that last choice in one particular way are steeper than many other choices, but it's still a choice.

So, figure out if you want to pay that price. Is the cookie worth the symptoms? Is the cake worth the increased risk of complications? Are the goodies everyone else is eating worth the pain and suffering you will go through now, and twenty years from now? If a cookie, a slice of cake, and the other items on the table are worth all that - you're an adult, you can make that decision. Most of us here would think it was a bad decision to make, but it is your decision. (Much like many other behaviors we know are bad for us; people still drink to excess, smoke, engage is particularly risky sports, drive without a seatbelt, etc. You may or may not think the risks are worth the benefits, but it's a choice each person has to make.)

Realize that being gluten free doesn't actually have to reduce your food-world. I eat for more foods now than I did when I was gluten free. How often do your gluten eating friends incorporate quinoa into their food? Have they had millet for breakfast? Have they explored the range of dessert options that opens up when you get rid of the standard items we always have around?

It can take a while (longer or shorter, depending on the person) to get adjusted to the diet - and it is a big adjustment because it's a different way of living than the people around us. But so is the choice to not have a car in some areas. So is the choice to work the night shift. So are a lot of other choices. This is just another choice that you can make and that you CAN be successful at if you CHOOSE (each and every time you pick something up) to be successful.

Link to comment
Share on other sites
rdunbar Explorer

Please don't be hard on yourself for not being able to follow through on this

you will go through a lot of changes as you heal, and none of us are perfect

still, I know you want to get better and be well

you wouldn't be on this board if you didn't

gluten is hugely addictive, I understand it mimics opiates to your body

and brain. Don't underestimate it's addictive power and blame yourself, please

if you can make it a length of time ,the cravings will dissappate

I actually get nauseous when I smell a bakery now

try baking a sweet potatoe, cutting it in rounds, put virgin coconut oil and raisins on top

drizzle a little agave nectar

yum! This cookie beats anything IMO!!!

Link to comment
Share on other sites
sb2178 Enthusiast

I haven't read all the posts, but wanted to go ahead and add a couple of comments. Sorry if I'm repeating myself.

1) the first two weeks are the hardest. really absolutely miserable physically and especially emotionally. you'll make it, and probably feel much better.

2) always carry food you can eat and that you like. nevermind healthy for now. if it's a snickers bar, it's a snickers bar. it'll help that you can pull out some chocolate when everyone else is eating brownies at a film opening (last night)

3) have the bf over your place. sorry. just for two or three weeks. contamination makes a difference.

4) pull your chef connections and take yourself out to a gluten-free treat at the end of week three. the whole bribe yourself... if I stick to it, I'll get to go have this great dinner at Ladila..

5) okay, now maybe you should think about healthy food again... there are some good things out there. all the fruit and veg in the world (black cherry sorbet, roasted red peppers, beans, peas, asparagus). buckwheat pancakes (with walnuts, flaxseeds, apple...). polenta. wild rice pilaf. risotto. latkes. meat. poultry. eggs. and you can cook, really well, I'd bet. view it as a challenge to your skills.

If you really doubt the diagnosis, plan a fantasy meal as a "challenge" after you've been gluten-free for a month or two. Some on here would call that an awful idea, but it would potentially help close the link for you. I did one. And it was MISERABLE. This only works if you are symptomatic, of course.

Also, this board is wonderful. Helpful and amazing for ideas and reassurance. Just be aware that some info can be outdated since it's been around for a while.

Link to comment
Share on other sites
Kelly&Mom Rookie

My 14 yr. old daughter and I both have celiac disease and I stay on the diet for several reasons.

1. My mom died of non-Hodgkin's lymphoma which originated in her intestines-she probably had celiac disease and died at 56. I really don't want to die a horrific death like she did!! I want to be healthy and be around for my kids and family.

2. I am my daughter's mentor. How can I be weak? I have to set a strong example for her.

3. There are times when I'm a little down about it (the smell of sourdough, etc. ) but I love to cook and I'm looking at it as a new adventure.

4. Whenever I'm somewhere where I can't have something, everyone knows I can't/shouldn't and would get after me!!

5. I think of all the calories I'm cutting out by not eating those easy to grab cookies, crackers, fast food. The weight is slowly coming off and that's satisfying in itself!!

Link to comment
Share on other sites
rachel-gf Newbie

It is hard at first. And then it gets better. My experience is that after a few months gluten-free, you look at gluten food, and it doesn't really look like a food anymore. This is hard to explain. But it's kind of like looking at a food you don't like (chicken feet?) and thinking, "Gee, I see other people eating this, but it just doesn't really look like food to me!"

Also please note that from your post, it does sound like you have a medical condition with gluten. Maybe it would be helpful to name it and say it to yoursef in the mirror, "I have non-celiac gluten sensitivity. I need to be on a permanent gluten-free diet otherwise I will get sicker." :-) This can also be good practice for saying it to others.

If you need to get more "validation" of your gluten sensitivity, keep in mind that:

- If you had taken the Enterolabs test (yes, not peer-reviewed yet) it probably would have said that you have a gluten sensitivity.

- If you had a different doctor, they may have formally said, "I diagnose you with non-celiac gluten sensitivity and you need to be on a permanent gluten-free diet."

Other things that helped me:

1. Always keep a bag of nuts/raisins in your bag as an emergency snack. If needed, add a gluten-free chocolate bar to this list.

2. Knowing you have gluten-free junk food can help manage cravings. At home, keep a gluten-free chocolate bar in the back of your cabinet. Keep a container of gluten-free ice cream and a frozen bag of your favorite gluten-free cookies or muffins in there. Buy some great gluten-free pasta and keep it in your cabinet. Be ready to turn it into your favorite comfort food (spaghetti & meatballs? macaroni & cheese?) in case of emergency. If you feel like you really need to binge on junk food, you can have these foods. Just knowing you have a fabulous bar of fancy dark gluten-free chocolate at home can help deal with any major disappointments. Forgive yourself if you go through a couple of bars of dark chocolate in the first month or so. It's not gluten!

3. Even though you have your back-up junk food, focus your actual eating around vegetables, some fruits, meats, nuts, and other foods like that. The more sugar and grains I eat, the more I think about sugar and gluten-containing foods. The more meat and vegetables I eat, the less I think about donuts, bread, croissants, etc. This may take about 2 months, but you will feel healthier and less focused around what you can't have.

4. Branch out for flavor: Find a fabulous Indian restaurant, Thai place, and Mexican restaurant. Go eat spicy food, foods you haven't had before, etc. Learn to make a Thai curry with coconut milk and curry paste. It's practically the easiest dinner to make at home, and is indulgent and naturally gluten-free.

5. Make a list of your symptoms every two weeks. What has changed? Do you feel better?

6. Keep a counter of your totally gluten-free days. Pat yourself on the back and brag to your friends every time you hit a new milestone. If you eat gluten on purpose, you have to start back at 0.

7. Get evaluated for nutritional deficiencies. Start taking vitamins as needed. The healthier I got, the less I craved bread.

8. Grieve. It's okay. It's human. I miss croissants! I do, occasionally, miss them. But not as often as I did before. One day, maybe I will have a croissant again. Just like maybe one day I will go back to Tanzania and eat a jackfruit fresh from a tree. That was tasty, too, but I don't need to have it to have a happy and full life.

Best of luck.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...