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Help.. I Need Support Please


shae22

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shae22 Newbie

Hi, I need some moral support. I found out I am celiac a little over a year ago... but for some reason I seem to tell myself that I"m not.. especially when I feel good. So I eat gluten and I pay for it. I use to get D but now it's constipation and with in days I am sick (cold like symptons). Not to mention that bloated tummy...yuck. Why do I do this to myself??? Then when I'm sick I just keep going on eating badly. Am I the only one with no will power??


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dbmamaz Explorer

I had been off milk and wheat due to 'allergic reaction' as an infant, and I'd thougth for years that i'd feel better if I quit them. Finally this past fall, i was ready. If you arent ready yet, you arent ready. However, realize that the longer you eat gluten, the sicker you will become, the more likely you are to get secondary problems (including cancer) and the longer it will take for you to heal once you make the comittment.

If you do want to try, just make sure to get yourself substitute foods that you really love. Be prepared with your own treats when you go out. Dont buy the stuff you love and keep it in the house - make your family eat what you eat, as much as possible. Look at the food, and imagine how you'll feel tomorrow (that always works for me!).

I have heard there are lots of folks who cheat ... many of the ppl here were so very sick for so long, they have serious fear of that suffering keeping them from it. No one can tell you what to do . . . its your body and your choice .. .

flourgirl Apprentice

I know it's hard to change habits, and to "give up" many foods that are tied emotionally to our feeling of and need for feeling of well being. I think you have to convince yourself on both conscious and sub conscious levels that these foods are not good, will not make you feel good, and as a matter of fact are poison to your very existence! I tell myself, when tempted, that this is rat poison. I NEVER EVER want to feel this sick again, nor will I do anything to endanger my survival as a whole, healthy human being.

I would advise that you read everything you can. Look at all of the associative manifestations of Celiac Disease, so that you can make an informed choice not to expose yourself to these crippling problems. I look at my mother, who has been diagnosed years ago with IBS, who went on to have arthritis, fibromyalgia, lupus, several miscarriages, and finally breast cancer, and more. I cry to think that with the information we have today....she may have been able to avoid being so ill, and having so much pain for most of her life. I will not be in that position. Unfortunately, I can't convince her to change her ways, she thinks she's too old at this point to do anything different. In my mind, anyone who has the information, and in light of the results, really has no options.

If you are able.....take the time to reflect why it is that you are resistant to change. Is there anything in your psyche that gains something from being sick? It can be hard to admit something like that, but it happens. You may need time to really understand the ramifications of eating "poisons", to convince yourself that you can be healthy and happy without those things. Set a goal, even if it's only for today, each day, to eat only those things that are good for you. In that way, you can develope new "habits", one day at a time. Hope this helps, even a little. I'm pulling for you!

lizard00 Enthusiast

Welcome to the forum!!! Glad to see you are using it for it's purpose: support

I understand about the eating it and then eating more. Back in Dec, I ate some pizza. This was when, even though I knew that gluten was bad for me, I didn't know if I had celiac or not, so I figure it was ok. Then, as I felt bad, I ate more pizza the next day. Because hey, I already feel bad, who cares! I'll just eat more because I like it and I already feel bad, so if I'm going to feel bad, I might as well eat something that tastes good. Sound familiar? LOL

But, you do have to be ready to make a change. You have to finally decide on your own that you feel bad, you're tired of it, you know what to do, so you're going to do it. It's like quitting smoking, until you decide to quit for yourself, you fail.

I would encourage you though, to make sure you fully understand the ramifications of ingoring your illness. It's not pretty down the road, and it would be awful to carry that regret. It seems totally overwhelming at first, but it becomes second nature. The temptations get less and less with each day that you feel better. And eventually, the gluten-free bread doesn't taste so bad. :D

Hope you feel better soon!!

Respira Apprentice

I used to do the same thing, I finally realized that I did this when I was feeling deprived, feeling sorry for myself, feeling how unfair it was, feeling it can't be true...etc. But it normally would start with feeling deprived. I have found that having special treats on hand has helped. When I am feeling deprived I either have a treat or do something special for myself. I also talk out loud to myself when I am tempted to eat something I shouldn't ie: "Have you lost your mind?", "oh great! Let's be sick for the next week, that'll be fun!" etc.

shae22 Newbie

thank you all for your advice. I will take it to heart and work on getting well. I have gone off gluten for about 6 months back when I first found out and man I did feel like a different person. It's just so easy with a husband and two kids who can eat anything to stay off gluten. But I am going to take it one day at a time and I am going to hit the health food store today for some gluten free treats. I also found gluten free donuts online..... who would have thought?? Now if only they made gluten free pizza that tastes as good as the pizzeria type. Thanks again for your support.

flourgirl Apprentice

Did you know that you can have Pizza? Gluten Free Pizza? I have tried the mix to make the dough and added our own toppings. It's not so bad. I'm looking for a recipe for pizza dough that's closer to the "real" thing...eventually I'll find it. Look at it as an adventure....keep trying all the "new stuff" until you build an arsenal of all of the things you like. Bet you find lots of new foods that you like just fine.


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  • 2 weeks later...
kitten37 Newbie

I am a HUGE foodie and Italian to boot. I tried to go off gluten about 2 years ago after a specialist suggested it might "help" but not in giving me a "this is what's wrong with you." In that time I felt so much better but as time went on I slowly started eating things I shouldn't have....remembering the feel/taste of certain things and just being plain lazy about it. Trying to deny what was what.

I have just re started not eating the things I shouldn't and the temptation for the bad things is always there because that's what is easily available and what westerners associate "comfort foods" with.

However there are soooooo many more options out there for people who don't like to cook and for those who do the opportunities are endless to make yourself super tasty treats and meals so you don

Guest hightop girl

I think you nailed it! We (or maybe just me) thought food was life, but it isn't. I have had to make that brain shift in the last few months from living to eat, to eating to live. There are lots of things I used to like that the gluten free substitutes just don't do justice to. At first I thought I would really miss them, but I am trying to use this as a time to try new foods, things I never thought about liking. t

I do miss comfort food when I am stressed. My daughter had her ACL reconstructed last week. We ordered pizza for her and my husband and I had a salad. I thought I might come completely unglued just from the smell, but in the end I lived. I hope this gets easier with time.

curlyfries Contributor

I totally agree hightop girl! I have been overweight for a long time. Before I knew what was wrong with me, if my stomach hurt, I would eat something else, hoping it would calm my stomach [usually ice cream]. After I realized my gluten intolerance, I couldn't do it all at once--- I did it in stages. Now that I am gluten-free [and dairy free BTW :( ] I am ready to deal with my weight by that same realization. I just can't put that much importance on something that has been poisoning me. I have not attempted to replace my favorites. I have found new favorites that are healthier. And when I do occasionally get that feeling of being deprived, I go for my new favorite treat----gluten-free/DF chocolate/chocolate chip cookie dipped in peanut butter [maybe two :P !] YUMM!!!

AliB Enthusiast

You have to do a bit of 'psych-ing' up here.

Keep telling yourself that the stuff is evil, it is killing you and you are better off without it. It is deceptively and insidiously poisoning you. You have seen the non-gluten 'light' and are way, way better off than all those thousands of poor people out there who do not know why they are suffering, that all they need to be doing is to not eat gluten.

You are now free.

Just out of interest, I have gone right back to basics to give my gut a real healing kick-start. I have dropped not just gluten but dairy, sugar and most carbs and am just eating plain unprocessed meats, fish and poultry, fruits and veg, honey and nuts and plenty of water - there is plenty of choice within those foods groups. Already, after just 2 months I can now eat eggs and the other day I had some cheese without any problem. Ok so I can't stuff on the 'easy' open-a-packet-and-stuff-it-in stuff any more but so what, I am feeling a lot better off without it!

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    • 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. 
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      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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