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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Want To Quit The Diet


againstthegrain

Recommended Posts

againstthegrain Newbie

I am so fed up with this diet. I hate the fact that I have to think before I eat. Think before I eat. There is no freedom in that and it is making me angry, which is increasing my depression.

Has anyone ever decided to bag it in and just go back to a gluten filled diet? What happened? I have been strictly gluten free since being diagnosed but I am ready to quit.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Food for Life



Celiac.com Sponsor (A8-M):
Holidaily Brewing Co.


elonwy Enthusiast

Every now and then I get a little fed up and start to stop being so attentive, and it usually ends up with me being horribly ill for a week. I don't ever "cheat" specifically, but I'll get fed up with wait staff and chance it and it usually ends badly. I think that the frustration of the diet is easier to deal with than the pain and fatigue of being sick from gluten. I also have a lot of things I want to get done in my life, and if a diet that I have to pay attention to is going to help me live longer, I'm all for it.

I think its harder because its not as recognized as say, diabietes, but it getting there, and I think its worth it for all of us to hang in there. Your health is more important that the hassle of haggling with a waiter, in my opinion.

It can be hard to make a conscious effort to take the time to take care of ourselves, I for one am much better at taking care of other people, but its worth it.

Elonwy

hez Enthusiast

I do get very frustrated and depressed at times. I feel like the disease has taken away my freedom to eat where I want, when I want, and to not read a label EVERY time I buy something. Having said that I have never cheated (I have been accidently glutened). Not because I am perfect or live in a bubble, more because I found a will to stay gluten-free. For me it was my kids. If they someday get this disease I want them to see me as a positive example. I want to be healthy for them and my dh. I am not saying that you should do the same, only what I have done to deal with it.

Hez

Felidae Enthusiast

I felt that way in the beginning. I accidentally was glutened at easter and I was so sick (vomiting, D, brain fog) that there is no way I would willingly eat gluten again. It really does get easier and you won't have to think constantly because it will become routine.

CarlaB Enthusiast

Don't you wish quitting was an option <_< I still occassionally go into denial about it since it's only been four months, but my family (kids and dh) straighten me out on that real quick!

lisaemu Contributor

I've gotten really fed up with having to be gluten free too. Just when I start feeling better, I "test" myse;f (purposely eating gluten). Im not officially diagnosed yet, so i always seem to second guess when i start feeling a little better. Most recent time was when I went to tennessee for the weekend, i got stuck at a buffet that was gluten FILLED. I was with my mom, who is trying ot be helpful about it, but doesnt fully get it. I figured Im on vacation, Im not officially diagnosed..lets see what happens. After wards I didnt feel all THAT bad (ok so some major bloating, but i figuerd ah well i can deal) so the whole weekend I wanted bread! Then i came home and bought bagels and cereals..and oh boy after about a day of that i was SICK. My stomach was in SO much pain, my whole body hurt, all i wanted to do was sleep, i was completely constipated, and I couldnt even move. All I could do was curl up in the fetal poistion, cry (and i am NOT a crier!) my mom had to come get me from college, it was awful and my boyfriend and mom were so worried. It seems to take forever to get it outta your system, no matter how small the amount of gluten. The last time before this when i "tested" myself...I ended up in the ER. Trsut me even though its frustrating sometimes...its worth it. Eating gluten is definately NOT worth eating! (Just in my experience tho of course..)

In my experience, when I get frustrated I go shopping and see all the different options that there are for me TO eat. (tho sometimes this can make it even more depressing... <_< )

tiffjake Enthusiast
The last time before this when i "tested" myself...I ended up in the ER. Trsut me even though its frustrating sometimes...its worth it. Eating gluten is definately NOT worth eating!

Ditto. When I thought "to hell with this" and ate a bowl of pasta, I passed out 30 min later and was in the ER when I woke up. My intestines had shut down. I learned my lesson! Now I fill my house with gluten free everything. Snacks, breads, desserts, and I DON"T have to think before I eat! I just see something good, and I eat it! The key is to eliminate things that could make you sick! But, when going out, that could be hard, but if you are careful, then you will be ok. Start with you house first. Make your house safe. Then you can worry about going out. Find a good pasta, bread, cookie, cracker, things like that, and keep them around you. You can do it. I promise!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Lakefront Brewery
Authentic Foods



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


mouse Enthusiast

I understand why you are thinking the way you are. After a year of gluten-free I thought I could cheat and have a meal full of gluten. So I went to Pf Changs and ordered every gluten filled appetiser they had. Believe it or not I had no reaction and so 2 weeks later I had a different gluten filled meal. Boy did I react. I no longer test myself. All I can tell you is that everyone has to decide the reason they are going to stay gluten-free. I wish I had been younger when I had been diagnosed. I think of the people that had to wait until they are in their 60's like me and find out their qualtiy of life went downhill super fast. Since my diagnosis 26 months ago, I have been diagnosed with 4 other auto-immune diseases. I have not listed them all on my signature and don't know if I am going to. I guess I don't want to see all of them in black and white. I have found through my 64 years that we each have to make our own paths - whether right or wrong. I wish for you to choose the path that is right for you.

plantime Contributor

I was accidently glutened a month and a half ago. It made me poop my pants at work, and it was very runny diarrhea. I will never eat gluten intentionally.

JodiC Apprentice
B) This may sound strange,but after going totally gluten-free for 2-3 months,I feel fine -so now I'm back to eating wheat and refined sugar.I felt I could eat it,so when I went to the supermarket I gingerly picked up two wheat rolls and a pumpernickel bagel and I ate them without pain or side effects or anything.I can't believe it,I feel like singing Aretha Franklin's song "So Damned Happy", 'cause I am! This week I ordered two wheat pizzas and ate those ,as if I were never Gluten-Intolerant,I had anchovies(little fish)out on my half for a topping. I ate wheat pound cake,two pieces, with no problem.I can even enjoy tomato-basil wheat tortilla wraps,since my wheat is going down real easy suddenly.I'll probably have bouts of Gluten sensitivity throughout my whole life where I'll have to go back and forth between wheat bread and rice bread,but for now I'm back on wheat! Has anybody experienced this? gluten-free for a few months then healed and back on wheat and some refined white sugar? It's amazing,it really is. I went around feeling like God raised me from the dead or something-I'm healed! I'm healed! I kept thinking. I will still keep gluten-free bread mixes handy so if and when I revert back to rice dependence I'll have some handy.

Candy

I just did a 3 month gluten challenge (doctor ordered). It almost shut down my intestines, so it is not worth it. Not to mention the fact that now I have to remove the gluten from my system all over again. This is a disease that needs to get the recognition of the medical community so that research can be funded and a cure can be found. The fact that my doctor took 10 years to diagnose me is ridiculous. Not to mention the amount of $$$ I spent on medical procedures and tests. People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

tiffjake Enthusiast
People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

I am sorry, can you please explain what you mean by this? What do you define as "proper testing"? And if someone wants to know, for themselves, how they react to gluten when it is re-introduced, why does that bother you? What progress are they stopping?

And a side note, you wrote you did a "doctor ordered" challenge. I just want to add that my doctor can not order me to do anything. Now that I know how sick I will get, he can take a long walk on a short pier before I will eat gluten to prove anything to him, or any other doctor that wants to see blood results at this point in the game.

***Quick edit: I just sat down with my glass of tea and was thinking....I don't want you, or anyone, to think that I am trying to provoke an argument. I apologize if the comment above appears rude. That is not my intention. I feel like I need to put that because of recent events on this board. My point being, please do not take offense to my post! I am not writing "sarcasticly". Thanks, Tiff

Terrilyn Rookie

I was just diagnosed with Celiac in Febuary 2006. I have had stomach problems all my life and am kind of glad that I have been diagnosed and kind of angry. I am still trying to free my system of any potential gluten or other allergies. I also am slightly lactose intolerant which, my doctor says should disappear as soon as my intestines are healed. I am struggling and yes I sometimes want to just chuck it all, but I know how sick I will feel and I would rather read labels and make special meals and trips to the health food store than to constantly have the pains in my abdomen. Right at this moment I have been not feeling well since last Friday, I had lasagna made with white rice pasta which I find to be the best of all the gluten free pasta's but, I think the ricotta cheese has done a number on me. All I can say is as frustrating as the diet can be I would love to get more than a week (which hasn't happened for me yet) without feeling ill. Stay strong because in the end it will all be worth it, as I know it will be.

Terrilyn

bluejeangirl Contributor
I am so fed up with this diet. I hate the fact that I have to think before I eat. Think before I eat. There is no freedom in that and it is making me angry, which is increasing my depression.

Has anyone ever decided to bag it in and just go back to a gluten filled diet? What happened? I have been strictly gluten free since being diagnosed but I am ready to quit.

Here's the problem. Well let me put it this way,.. I have to take a notebook and plan my meals at least for the next 2 to 4 days ahead of time. I make sure I have all the ingredients all the snack foods, all the potential problems that could occur all figured out. I usually do this while watching tv. at night. This way it frees me up because all I have to do is look down at my menu and not have to think about it. Also its usually to late to start thinking about what I'm going to eat when I'm hungry. Its only then that I want to give up and give in to my emotions. Always plan ahead and always have gluten free snacks especially because you can always just spread a few rice cakes with peanut butter to take the edge off and then if you have to go to the store you'll be less likely to cheat or go to a drive through. I have to say I love sticking to a planned routine. I also love the foods I eat. They are different but I've grown accustom to them. So will you. I do understant in the beginning its overwhelming. But you'll get the hang of it. Believe me the taste of a piece of bread is not worth the pain later.

Gail

bluejeangirl Contributor
I just did a 3 month gluten challenge (doctor ordered). It almost shut down my intestines, so it is not worth it. Not to mention the fact that now I have to remove the gluten from my system all over again. This is a disease that needs to get the recognition of the medical community so that research can be funded and a cure can be found. The fact that my doctor took 10 years to diagnose me is ridiculous. Not to mention the amount of $$$ I spent on medical procedures and tests. People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

I'm fine with not having an official diagnoses. The reasons you listed are the reasons I don't want one. The gluten challenge, 10 years before the doctor actually gives you the diagnoses, $$$$$$$ on tests. I don't need to spend $1,000 of dollars in repect for the medical community. I don't think this will speed up a cure. That will come in time. But in repect for you and others that went through all of that I won't say I have celiac although I have all the symtoms. I just say I have a gluten sensitivity.

Gail

plantime Contributor
I just did a 3 month gluten challenge (doctor ordered). It almost shut down my intestines, so it is not worth it. Not to mention the fact that now I have to remove the gluten from my system all over again. This is a disease that needs to get the recognition of the medical community so that research can be funded and a cure can be found. The fact that my doctor took 10 years to diagnose me is ridiculous. Not to mention the amount of $$$ I spent on medical procedures and tests. People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

I'm curious as to how you posted a quote from a different thread onto this one. Did you do this on purpose, or accidently?

Felidae Enthusiast
People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

My doctor did blood tests years apart and both were negative. So, she didn't send me for an endoscopy. I've had a colonoscopy and was told I have IBS and to eat more fiber. I went gluten-free on my own because I was sick of being sick. I saw my doctor one month after being gluten-free and she was very impressed with the improvements in my health. She said you should not eat gluten again and get very sick again just for an endoscopy that may come back negative anyways. She said your body is telling you something that a test might not and then where would you be, back at square one. So, I don't believe I am hurting anyone without having a diagnosis. My doctor is great by the way.

I don't claim this disease but I definitely have gluten intolerance and there is a long family history too.

Mango04 Enthusiast
People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

I'm also a little bit confused about this statement. I never found a doctor who would test me for celiac disease, but when I eat gluten I have constant D, depression, severe muscle pain, headaches, bloating, skin problems etc. etc. etc. Knowing that for a fact is enough for me to claim gluten intolerance and stick to the diet. I might have celiac disease, I might not. I'm not willing to make myself sick again to find out. I don't think I'm hurting anybody by sticking to a gluten-free diet. I'd only be hurting myself if I ate gluten again long enough to get tested. Maybe I misunderstood what you were trying to say....?

BamBam Community Regular
I'm also a little bit confused about this statement. I never found a doctor who would test me for celiac disease, but when I eat gluten I have constant D, depression, severe muscle pain, headaches, bloating, skin problems etc. etc. etc. Knowing that for a fact is enough for me to claim gluten intolerance and stick to the diet. I might have celiac disease, I might not. I'm not willing to make myself sick again to find out. I don't think I'm hurting anybody by sticking to a gluten-free diet. I'd only be hurting myself if I ate gluten again long enough to get tested. Maybe I misunderstood what you were trying to say....?

I do not have an official "diagnosis" either. I refuse to get one to. I was sick for close to 15 years before I quit eating gluten. I bet between insurance and my co-pays I've spent close to $50,000 on colonoscopys, EGD's, blood tests and whatever else I had to go through. I think I had 4 colonoscopy's! And see, I've never once thought of this as a disease - to me it is an eating intolerance. I may have the "disease" but I do not need a doctor to tell me that. I have been totally gluten free now for almost a year. Last year I was eating some yogurts that had gluten in them. I've also given up dairy and casein and feel even better.

Yes, some days it is hard to get things right, but the advice is good - to make sure everything in the house is already gluten free, that way less mistakes are made at home anyway. It is hard to eat out, I stick with basic steak and baked potato with so seasoing and no butter on the spud.

Life is so much better this way, and I think in the years to come thousands and thousands more will be diagnosed with this problem/disease. I have an elderly friend that was just diagnosed with gluten intolerance. Her situation was so bad that she lost half of her colon due to the problems gluten caused her. If she would have been diagnosed ten years ago, things would be different for her.

I have five people in my little community so far with gluten intolerance. I have a sign up sheet at the local health food store that I check each week. I encourage all of you to do that, put a sheet in your local health food store and see how many there really are out there and meet every now nd then to discuss recipes, or shopping guidelines. It is a very beneficial to have a support person or group. And it doesn't have to be a "licesned" group - just get together for an hour and talk things out. I learned a great deal from one person in my little group.

BamBam

Felidae Enthusiast
I have five people in my little community so far with gluten intolerance. I have a sign up sheet at the local health food store that I check each week. I encourage all of you to do that, put a sheet in your local health food store and see how many there really are out there and meet every now nd then to discuss recipes, or shopping guidelines. It is a very beneficial to have a support person or group. And it doesn't have to be a "licesned" group - just get together for an hour and talk things out. I learned a great deal from one person in my little group.

BamBam

That is such a great idea. Hopefully, I won't have to live in a city for much longer. If I can get back to a smaller setting, I think I will try setting this up too.

paw Apprentice

Yes -- I want to quit too! Today I was hungry and there was no one in the house but me (to see if I was cheating) and I looked at the pizza full of gluten, cheese and tomato with pepperoni (nitrates). I LOVE pizza! I can't have any of the parts of it though. Soy is out for me, no dairy, and doc said tomatoes were too acid. I can't even have the gluten-free kind.

Anyway, I just looked at it and thought about how sick I would be. Would it be an hour till I get sick or maybe a couple? I did not eat the pizza. It is still sitting in the fridge. I have a husband and 2 teens who have no desire to go gluten-free. I just have to be responsible for myself and not eat the bad stuff.

sillyyak Enthusiast

I am so angry that I do not have the freedom to eat what I want to eat. I wish I could just take a chance and eat gluten and know nothing will happen.

key Contributor

I don't know if this is the case for anyone else, but it has been a year since my diagnoses and I think I am finally accepting things. I have been depressed over it, angry, frustrated, you name it! Now I see it as a better way of eating and it keeps me on track. When everyone else is grabbing fast food, pizza and junk, I am forced to make my own veges, fruits, etc. I feel healthy and most of the time I don't even miss eating out. It is cheaper in that aspect too. It is definitely an adjustment period and was a long one for me.

FOr me there isn't an option, I get too sick.

Monica

happy4dolphins Enthusiast

YES'EM, I"ve decided to bag is many times!................and then I get sick, feel yucky and have MAJOR diareah and stomach/intestinal pain and discomfort. So, then I get back on it and do better the next time. I think this is like my third time after stuffing it.

I found a good book by Bettey Hagman that has GREAT recipees that taste like regular food. I'd highly recommend it to someone new starting out. I"ve been at this since Nove 2005 and I am still struggeling but getting used to it. I know that I dn't want to feel that way anymore and that's often enough lately to not eat it.

I had one of the kids left over cinnamon toast waffles in my mouth the other morning and some how, I spit it back out, as much as I wanted to eat it. Really, not having those things use to feel like I was missing something, but now they don't taste as good at all and I know, boy do I konw, if I eat that, I'll be paying for it the next couple of days. ANd I"ve got stuff to do that I'd like to feel good for.

Nicole

skoki-mom Explorer
I'm also a little bit confused about this statement. I never found a doctor who would test me for celiac disease, but when I eat gluten I have constant D, depression, severe muscle pain, headaches, bloating, skin problems etc. etc. etc. Knowing that for a fact is enough for me to claim gluten intolerance and stick to the diet. I might have celiac disease, I might not. I'm not willing to make myself sick again to find out. I don't think I'm hurting anybody by sticking to a gluten-free diet. I'd only be hurting myself if I ate gluten again long enough to get tested. Maybe I misunderstood what you were trying to say....?

Well, I don't claim to speak for others, so I can't answer for JodiC. As well, after the hell that some people have gone through I would never tell they are crazy if they are self-diagnosed. However, the fact is, like it or not, research is improved by accurate statistics. Positive blood work and positive biopsies are, at least right now, the only truly accepted standard of diagnosis for research. You have to have quantitative data to make real progress, you need numbers to back up statements like "it's more common than you think". Well, how much more common? Research costs money, and lets face it, diseases that affect more people draw more attention/money than things that are still generally thought of as "rare". I'm not dissing anyone or the choices they have made, but that's just how it is. I don't think those of us with the "gold standard" biopsy are trying to advance the cause, we are mostly just lucky that we know, without a doubt, what it is we have.

WLJOHNSON Newbie

Hi,

Oh yes, your messages cause me to recall the days when cheating seemed like the thing to do! Of course, I NEVER thought of it as cheating, because 40 years ago I didn't even know what Celiac Disease WAS. But, I did finally begin to realize that when I ate certain foods, I would end up having Asthma so badly, that I would sometimes have to be hospitalized, and I knew without a doubt that I would gain weight, and experience depression, as well.

I've had Asthma since age 8, but since learning that I have Celiac, I've also learned to stick to a very strict, stringent diet, eliminating not only wheat, oats, barley and rye, but also all milk and dairy products, anything with egg whites and yeast, and such additives as casein, whey, maltodextrin, and modified food starch.

I would NEVER think of cheating today, because, thank God, I have learned what causes my illnesses, and how to prevent them. Now I take one Asthma pill a day (down from 13-20 in days past), use a breathing machine 2 times a day, and hardly ever wheeze anymore, hardly ever have depression, and stay within a reasonable weight range. All that, along with days of high energy, feeling well, and being able to help my grandson, sister, and cousin, who have all been recently diagnosed with Celiac.

Why cheat? I'm having fun developing new recipes and seeing that each day more and more people are becoming aware of Celiac. It is kind of like being pioneers. We're on the forefront of a new wave of good health among the people of America, and that, I think, is a good place to be. I hope you will find comfort and encouragement as you learn to live with this diet. Welda Lou

Archived

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


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      129,794
    • Most Online (within 30 mins)
      7,748

    DebLynnH
    Newest Member
    DebLynnH
    Joined

  • Celiac.com Sponsor (A20):
    GliadinX


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Daura Damm



  • Upcoming Events

  • Posts

    • Russ H
      There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives.  The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
    • thejayland10
      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
×
×
  • Create New...