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What Happens If I Don't Stick To The Diet?


Killarney

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Guest gliX

under no circumstances should you eat wheat anymore, because, i have the same thing, 0 out of 1 million times i feel a thing when eating gluten. However, the doctor said my intestine was messed up and i went back last month and he said it was looking great. i don't know what can happen if your intestine gets messed up a lot but it's probably not good.


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jrobertson Newbie

Hi all, Im still very new at this but feel the need to write. Ive been gluten-free for about 7mo now and night b4 last I got up and slept walk to eat some bread. Ive always walked in my sleep but never to eat. I was told by my doctor once again that I tested negitive for C.D. and wasnt willing to eat the stuff again to be retested. It hurt too much. Well, after getting up and eating that wonderful gluteness food I have been SICK since. Cant even leave the house due to the stomach pain, constant trips to the bathroom, insomnia. Now, this really makes me mad cause I was just told once again I was crazy. Subconsciously tried it one more time and feel terrible. Does it sound crazy that blood tests could just be wrong? I had taught myself to stop eating all together before testing cause I believed everything made me sick. Now Im crazy cause I started this diet due to the pain I feel when I did eat glutens? Is there a win in this situation? I know Im not crazy... just proved it to myself again but how do I get this doctor to understand?

darlindeb25 Collaborator
;) maybe it's time to change doctors--sometimes you have to try a new avenue--i listened to the doctors and went over 20 yrs without help--an internal medicine man told me IBS or spastic colin, told me to reduce my stress (right, we can all do that) <_< and put me on xanex--they started me on .25mg 4x's a day--i could not even walk let alone function :blink: , so then they told me to just take them when i felt a panic attack coming on--well, my tummy problems were what was causing the panic attacks because i knew that if i planned anything or was taking someone somewhere, that of course my tummy would act up, so then i had anticipatory aniexty too--i know now that me being celiac and not absorbing my vitamins was causing me to have a chemical imbalence in my brain which caused the panic--when the xanex didnt work, they put me on paxil--by the time i tried going gluten free, i was taking 40mgs of paxil a day and barely getting by--as i was getting better from removing gluten from my system, i also weaned myself of paxil--they tell you paxil is not addicting :angry: , but that's a lie--you NEED it and there were days when my man would tell me to please take my meds--i would have crying days--cry all day long, it was difficult to be around me, i am sure--learn to listen to your body--it takes time and the truth is, i know i am a celiac, never been tested, but i know and even if i wasnt--gluten free will not hurt you, we can live very healthy lives without gluten :rolleyes: ----SOOOOOOO listen to your body--otay :D deb
celiac3270 Collaborator

Lpellegr used the "report" button to try to reply to this thread. The member wanted to say:

I am recently diagnosed and also have no outward symptoms other than anemia, which I found through blood testing (I never felt anemic), so I have no way of knowing if I have accidentally eaten anything forbidden.  People keep asking if I feel better, but I felt fine before except for random GI symptoms that I thought were IBS.  So even though it makes no difference to how I feel, I am trying to stick really hard to a gluten-free diet because I have read about the long-term consequences of gluten exposure.  Cooking at home works out fine, although substitute food can be expensive, but eating out is a challenge (and I'm already planning what I will do when I have to travel for work - not easy).  But I am sticking to it to make sure it doesn't get worse.  Like some of the other posters said, focus on what you can have and try to include new things, rather than mourning for what you can't have.  I try to educate friends and family to the long-term consequences so they will help me, and most willingly do.  Now if I could only find a good substitute pizza crust....
plantime Contributor
And if you're curious, McDonalds fries and burgers without buns are gluten free. : )

Please be careful here! I don't know if McDonald's serves onion rings, but other fastfood joints do, and they cook the rings in the same oil as the fries. At least, all of the ones I have been to do! Just remember to ask if the fries are done in a dedicated fryer!

darlindeb25 Collaborator
:D this one i can definitely help with--my son is the manager of a McDonalds and they never put anything else in the french fries oil--only fries go in it and i have had fries at McDonald's and been fine--i dont know if i would trust the burgers, only because you are only safe if the person with the turner isnt touching buns--it is so easy to not even realize you are cross contaminating--i was thinking about just that the other day when i was making coffee at work--we use the same filter holder, of course a different filter each time, but none the less, the same filter holder for all brands of coffee--it's so easy to make a mistake---but, i do know the fries are safe--eat hearty :P deb
lilliexx Contributor

hey

i just wanted to add my two cents here. I also was a pizza/pasta/bread freak!! And i still am!! I am 2 & 1/2 months glutenfree :) and i still eat most of the same foods. I make lasagne,sphegetti & other pasta with tinkyada noodles!! they are the best. Alot of rice pasta gets soggy and falls apart but not tinkyada!! Another one i like is papadini bean pasta. It has a different taste and texture than real pasta but i still find it quite good. The sauce i use that is glutenfree is classico. (all flavors are gluten-free)

The only gluten-free pizza i have found is amy's brand. It's cheese only, but you can add your own toppings. And for bread, you are better off making your own. The packaged kind is gross. buy a bread mix and make it by hand. They taste like real bread but do crumble more than reg. bread.

It is sometimes a pain being glutenfree but its worth it in the long run.

good luck!!

lillie


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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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