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kristianne75

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kristianne75 Newbie

and I have to ask, does anyone just not care about food anymore? I honestly couldn't care less what I eat, it is simply something that I have to do to stop from starving. The foods that I enjoyed are all off limits, and so far the gluten-free breads and buns that I have tried have been awful.

I have only been gluten-free for a little under a year, and I feel so much better, have so much more energy and my quality of life is improved so much that there is no way I will break my resolve, however eating has simply become a pain in the butt. I hate having to figure it out, lunches stink (I am going to turn into a head of lettuce pretty quick)and I just don't care anymore. I eat only because I have to and there is no meal that I actually look forward to anymore. Something as simple as "running to grab something" is out of the question, and I just don't care.

Does anyone else out there eat only because you have to in order to stay alive? Or do I need a therapist? :-)


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Ahorsesoul Enthusiast

My dh thinks food is just fuel. Not me, I've been gluten free for years and still a foodie. Make all my favorite foods gluten free with no problem.

YoloGx Rookie

and I have to ask, does anyone just not care about food anymore? I honestly couldn't care less what I eat, it is simply something that I have to do to stop from starving. The foods that I enjoyed are all off limits, and so far the gluten-free breads and buns that I have tried have been awful.

I have only been gluten-free for a little under a year, and I feel so much better, have so much more energy and my quality of life is improved so much that there is no way I will break my resolve, however eating has simply become a pain in the butt. I hate having to figure it out, lunches stink (I am going to turn into a head of lettuce pretty quick)and I just don't care anymore. I eat only because I have to and there is no meal that I actually look forward to anymore. Something as simple as "running to grab something" is out of the question, and I just don't care.

Does anyone else out there eat only because you have to in order to stay alive? Or do I need a therapist? :-)

Nothing crazy about this attitude at all though maybe other people you know might look askance?? Or not be up to your ability to be so self limiting? Food is I agree after all just food. Actually having a life at last is far more interesting than baking all day etc. etc. Is someone in your life complaining? If so, maybe moderate the one attitude with the other. Am having to learn to do a bit of that myself.

I have gone through long phases of not really caring what I eat either in the sense of doing without goodies I used to have. Nevertheless I do try to make what I eat at least tasty enough even if simple and often repetitive. I make a lot at once usually--often baking a chicken and then using the meat I either just heat up, cut up cold and put in salad, or rarely stir fry or make a casserole or make a big crock pot chicken soup. I use a faaair amount of rosemary and basil and would use ginger except my roomie can't handle it. Occasionally I have salmon. The other meats don't seem to agree with me that well. Similarly I bake a bunch of squash and/or brown rice. I avoid most breads since I don't do well with yeast products. I make a big bowl of it every other day or so and at night some kind of steamed vegetables. I often will have some fresh veggies I blend up with a little water for a pick me up. All interspersed with regular doses of my home made 24 hour yogurt sprinkled with stevia. All simple mind you. Stuff I can take anywhere quickly in my little insulated food bag if necessary.

Lately however I have started to incorporate home made teff/sorghum pancakes again (as well as rice, cornmeal and quinoa variations) with yogurt topping sprinkled with sunflower seeds and a little stevia. However you call it its still pretty plain--but tasty enough for me. I use coconut oil in the pan so the oil won't burn. Over the holidays I did figure out how to make a mean rice pie crust with pumpkin filling for those times of true craving and may once again get back to making stevia sweetened brownies. Unfortunately I seem to be still sensitive to fruit except for lemons.

Nevertheless overall I don't make a big fuss over cooking like I used to. And yes I was a pretty good cook! Its ironic I guess since now I have to make everything from scratch and not use sugar(s) as well as anything faintly smacking of gluten plus for the most part avoid eggs and cheese (they are a treat once a week).

I think this attitude is actually healthy. It certainly isn't victim or poor me thinking. Instead it looks at life and invites it in. There are so many more interesting and fun things than spending all one's time worrying about making delicacies. Though as said, also making some room for the occasional delicacy too is also probably a good thing, not only for you personally but also socially.

missy'smom Collaborator

and I have to ask, does anyone just not care about food anymore? I honestly couldn't care less what I eat, it is simply something that I have to do to stop from starving. The foods that I enjoyed are all off limits.

I have only been gluten-free for a little under a year, and I feel so much better, have so much more energy and my quality of life is improved so much that there is no way I will break my resolve, however eating has simply become a pain in the butt. I hate having to figure it out. I just don't care anymore. I eat only because I have to and there is no meal that I actually look forward to anymore. Something as simple as "running to grab something" is out of the question.

Does anyone else out there eat only because you have to in order to stay alive? Or do I need a therapist? :-)

Due to multiple restrictions(not only foods but timing and portions as well) because of multiple problems I feel much the same way. There are many things that taste good but it's not the same kind of pleasure that it used to be. There's nothing wrong with that. I just have to learn to chanel my emotions in different ways, which is a process. I would rather have my health and be able to enjoy other things in my life than eat whatever my heart desires and feel like crap. I don't pine away at what I'm missing because that will never change anything. I will not ever be able to eat those things and not get sick. That's just reality. But I do feel much like you about the rest and lack of convenience plays into that alot. At least I can still enjoy a good glass of wine, cup of tea and dark chocolate(in moderation)! and try to just be in the moment and savor things like that when I can.

I wonder if part of what's going on with us is that we are feeling the one year mark. I have been gluten-free over three years and don't remember how I felt at one year in but I have been managing new restrictions for just about a year now due to a diabetes DX and I'm feeling a bit burnt out. There is a certain amount of mental and physical energy needed to sustain such an effort as we have made and at some point, at least I, feel a need for a break, a reprieve, a rest, just want to walk away, take a break and come back refreshed but dietary management is a necessary, daily thing for those of us with health issues. Plus we are just coming out of the holidays and that doesn't help. I think we need to make an extra effort to nurture and be good to ourselves in other ways. Lately, I'm trying to make sure I spend my precious time and money on things that I truly enjoy and not just on "fillers", I turn the TV, and the computer, off alot more and watch only the things that I really like, spend $ that I am normally tight with, on that book or magazine that I tend to deny myself but really enjoy.

YoloGx Rookie

Due to multiple restrictions(not only foods but timing and portions as well) because of multiple problems I feel much the same way. There are many things that taste good but it's not the same kind of pleasure that it used to be. There's nothing wrong with that. I just have to learn to chanel my emotions in different ways, which is a process. I would rather have my health and be able to enjoy other things in my life than eat whatever my heart desires and feel like crap. I don't pine away at what I'm missing because that will never change anything. I will not ever be able to eat those things and not get sick. That's just reality. But I do feel much like you about the rest and lack of convenience plays into that alot. At least I can still enjoy a good glass of wine, cup of tea and dark chocolate(in moderation)! and try to just be in the moment and savor things like that when I can.

I wonder if part of what's going on with us is that we are feeling the one year mark. I have been gluten-free over three years and don't remember how I felt at one year in but I have been managing new restrictions for just about a year now due to a diabetes DX and I'm feeling a bit burnt out. There is a certain amount of mental and physical energy needed to sustain such an effort as we have made and at some point, at least I, feel a need for a break, a reprieve, a rest, just want to walk away, take a break and come back refreshed but dietary management is a necessary, daily thing for those of us with health issues. Plus we are just coming out of the holidays and that doesn't help. I think we need to make an extra effort to nurture and be good to ourselves in other ways. Lately, I'm trying to make sure I spend my precious time and money on things that I truly enjoy and not just on "fillers", I turn the TV, and the computer, off alot more and watch only the things that I really like, spend $ that I am normally tight with, on that book or magazine that I tend to deny myself but really enjoy.

I totally agree--sometimes one just wants to flake out but can't really. That's why I make things in bulk so I won't have to really mess with making things from scratch all the time. Plus it helps that my room mate also has very similar dietary issues since he too has at least severe gluten intolerance. It isn't identical but its enough the same that we help each other. I think if I lived with other people I would hope they ate at least partly like me too and thus could occasionally chip in--otherwise I wouldn't share my food with them because it would seem like a real headache otherwise trying to keep up with everyone without help. If I lived by myself I would freeze things more.

Meanwhile for me other things like art and writing have taken on increased importance. I am also taking a hypnotherapy class--to help me as well as others. I think with this dis-ease its easy to think of oneself as a victim since we are the oddball out often socially. So whatever you can do to feel positive is really important. I like to remember and notice that I am a lot healthier than my siblings for instance and most people my age. I have more energy overall and no longer get ill easily--in sharp contrast to the past. While its true that celiac ignored can lead to some really bad effects (like cancer etc.), paying attention and doing what is necessary for it is very excellent for one's health. In fact its often posited that eating the way we do (i.e., off all gluten and sugar and most of the the bleached flours -- even the alternative ones -- and processed, pre packaged foods plus take supplements needed to make up for the damaged villi) it way ups the chance for most of us to live a longer healthier quality life than the average person.

brendygirl Community Regular

It's natural to not want to eat--when you feel so good not eating and run a risk of getting sick or stressed about getting cc'd when you eat!

This is why anorexia can be a side effect of celiac. It feels good to go without food.

When I first got dx, I got very thin from not eating and I had to make a rule that I would eat fruit at 9PM if I hadn't eaten anything all day.

Eventually, I found "safe" food to eat on a routine basis and keep in my car and at work, so now I'm a normal weight.

Good luck to you.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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