Jump to content
  • 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 Our Content
    eNewsletter
    Donate

I Need Your Advice


jnessa055

Recommended Posts

jnessa055 Newbie

hey ladies!! i have been a celiac since i could walk.. i was born with it and acutally almost died because my parents had no idea.. (no one in my family has celiac disease but me) ironic huh?? kind of sucks that i was picked out lol. but oh well. my problem is that i have tried to stay gluten free but i ALWAYS CHEAT! i do good for a little while and then i get unbelieveable cravings and i give in.. how do any of you deal with that?? i do soo well... i take my vitamins every morning i read lables like a freak lol and then one day i cheat.. and i pay for it.. and then i have to start all over again... any advice would be wonderful thanks!


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



Celiac.com Sponsor (A8-M):



hez Enthusiast

I think all of us have different ways of coping/dealing with the cravings and dealing with celiac. For me I see gluten as poison. If feels like it too! I have horrible reactions to small amounts so that alone helps curb the desire. I will be sick for about a month from just slight cc.

I also have kids that at some point in their lives may have this. I try very hard to be a good example. If I cheated that would not set the example I want.

Find what motivates you to sticking to this diet. Change how you perceive gluten. Keep asking questions and someday someone else's idea will work for you!

Hez

JNBunnie1 Community Regular

Maybe you should pinpoint the foods that typically trigger a cheatfest and try to get some replacements, and ask for recipes here. Or start telling yourself, "I am giving my self cancer just like cigarette smokers" every time?

mamaw Community Regular

Okay, here's my ????? -- to begin with you said you had celiacs since birth & have have trouble with cheating... At such a young age who was supplying your "posion Wheat"

I would also think others in the family may also have celiac or intolerant at least but maybe present no ill-effects from the illness.There are millions of silent-celiacs in the world today... it's like a train wreck waiting to happen in the US...

We all have to find a way to not cheat EVER..... AS some call it "Posion" others have gotten so sick they don't even want to mention the word Wheat.. My silly thing was at the beginning was to make believe that I was in a foreign country & there was no flour available that I normally would use in baking so I had to experiment with strange flours I really never thought about. It was excitng to see what I could come up with to make & after time I now can duplicate almost everything I was missing in my wheat world.

Use your willpower & please don't cheat, your health is so important..remember the old saying " CHEATERS NEVER WIN"

We have two kids & two adults now on the diet.

blessings & health to you

mamaw

ptkds Community Regular

I just make sure I have safe alternates available to me all the time. If I get a craving for something, I try to find a substitute. 2 of the hardest things I have had to give up that are hard to replace is choc. chip cookie dough ice cream (and other flavors), and oreo cookies. I can make my own oreo cookies (there is a wonderful recipe on recipezaar.com). Pizza is a big one, too. I think what has helped me NOT cheat since I was diagnosed is my 3 kids who also have celiac. I know I probably would have cheated if it werent for them. But I also remind myself of how sick I would be when I eat gluten.

Just remind yourself of how sick you get when you get the urge, and then find a safe alternative to fill the craving.

Good Luck!

Offthegrid Explorer

I had a lot of problems with this, especially when I was first diagnosed. I was mad at the world, essentially, and everyone who ate gluten in front of me.

You know, the longer I stay gluten-free, the easier it is. But the second I get really, really hungry and there's nothing available to me is the time that I would cheat.

Now I've gotten really good about having foods with me. If I'm going out for the day, I take some homemade banana bread, cookies, potato chips, fruit, Larabars, so that whether I'm craving something sweet or having to watch someone eat something salty like french fries, I always have something available. That helps a lot.

And being more savvy has helped, too. The other day my hubby and I took a surprise trip away from home. I can walk in a convenience store and grab some potato chips, a banana and something to drink and I'm OK. It ain't the healthiest, but it still is healthier than eating at McDonald's!

Now that I can't have casein, I'm not craving pizza very much anymore at all. I just get so sick on it that it just isn't appealing anymore. But Amy's does make a very good rice pizza. Just add your own toppings because it only comes in cheese.

gfgypsyqueen Enthusiast

Since you have had celiac disease for so long and knowingly cheat, it's time to take a hard look at why. When do you knowingly cheat? With family, friends, on a date, or just hungry and no other choices available? Do you cheat over a certain food? Pizza and beer? Pizza would be my downfall. But I get so sick it is not an option to cheat. I think many of us carry food with us at all times. Raisins, nuts, cookies, candy are all easy to fit in a small bag and don't take refridgeration. Start carrying something with you or leave it in the car. eat before you go out to eliminate the snacking problem.

The convenience store snacks are perfect. Most carry fresh whole fruit like apples, bananas, or fruit cup. Water, drinks, soda, chips, and candy. It's not the best for you, but it is food and it can be gluten-free.

I found out a log time ago that I need to have gluten-free snacks in the house at all times. I need to know that I have choices and options. Now I keep a few cookies in the pantry and I am happy.

Let us know if you need recipes or ideas for food to carry with you.


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

I would also look at the times and situations that you cheat in and try to do something to change it.

The hardest times for me is when all my friends are eating delicious stuff and I can't have any of it. So I try to always have yummy dinners in my freezer so I can grab something on short notice. I bake a lot and bring things along to friend's houses to share. I've also trained them to buy gluten-free brands of food :)

jnessa055 Newbie

hey ladies thanks for all your advice..

well my family has no signs of celiac disease at all.... except me. that makes me wonder now. and makes sense because not everytime that i eat wheat i will get sick from it.. so thats why i cave in all the time.. even tho i know its hurting me inside i dont feel anything so i continue to eat the poison. when i was younger i was devasted that i had celiac disease and i made myself think that i didnt have it and ate whatever i wanted whenever i wanted for a long time until i got really really sick and ever since then i have been trying really hard to stick to the diet, but like i said i always end up failing. your advice has helped and this forum has helped.. even though i was diagnosed when i was 3 i still didnt know very much about the disease. i found a gluten free bakery/cafe and they deliever.. so hopefully it'll be good..

yes i love Amys foods!! the mac and cheese gluten free is one of my favorites.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.