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

Soooooooooo Hard


Alou123

Recommended Posts

Alou123 Rookie

:angry: This is soooooooooo hard! Being on a gluten free diet is not like other diets. This diet, if you eat something your not supposed to, you get sick! Two days ago I was at a party. I didn't eat the fried chicken but I ate a brownie the size of a quarter. When I went to dance, my toes started tingling I got a headache.(the headache might have been from the music) It stinks!

Anna Louise


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



Celiac.com Sponsor (A8-M):



HAK1031 Enthusiast

It sounds like you're pretty new to celiac/gluten intolerance. Don't think of this as a "diet" the way you might think of a weight-loss diet, instead think of it as a lifestyle overhaul. You really can't eat ANY gluten at all...one crumb is enough to leave me doubled-over. Even though you may not feel sick from it, it is still doing its damage. You also have to consider cross-contamination- I brought gluten-free cookies to a party last night, and at the end of the night, they wound up on the same plate as gluteny ones...that makes them unsafe. Don't use the same cutting boards, colanders, wooden spoons, or baking sheets as your gluten eating family.

That proably sounds really restrictive. The good news is that there's tons you can eat. My friends are totally used to my gluten-free diet by now. At parties, I eat cut-up fruit and veggies, potato chips, tortilla chips, popcorn, etc. I just take food at the beginning of the night before people have a chance to stick their gluten-covered hands in the bowls. There are also great gluten-free subtitutes for ALL your favorites. Ask around before you buy though, as there are many that taste like cardboard. But those that are good, they're great! Glutino is a great brand, as is gluten-free pantry for baking mixes.

Good luck!

kbtoyssni Contributor

I don't think of this as a diet in the common usage of the term, either. I think if it as my life. If I want to live to my 30th birthday, I don't eat gluten.

On a weight-loss diet, the consequences of eating something you shouldn't aren't too severe - maybe you don't lose a pound that week, but no biggie. With celiac, you eat something you shouldn't and you get cancer. The strange thing to me is that now I don't see gluten food the same way as non-gluten food. I know it's technically edible and I'm fascinated by it, but it never, ever occurs to me that I should eat it.

My best advice is to plan ahead. Don't go to the party hungry and bring some food with you if you think you'll get hungry later. If you know there will be brownies and they're a temptation for you, make your own gluten-free ones. Don't feel badly asking the hostess in advance what she's making so you can plan ahead. A lot of times I'll be out and see something really yummy looking that has gluten so first thing I do when I get home is to make my own version. In my purse I have my essentials with me at all times: wallet, cell phone, lipstick, and a snack.

This does get easier. At first it's so hard to know what you can and cannot eat, but give it time and you'll get it down.

  • 6 months later...
CeliacAlli Apprentice

Don't eat gluten and trust me it'll get better!

GlutenFree2 Newbie
Don't eat gluten and trust me it'll get better!

That is very true. It starts out hard, but gets easier.

CranberryTheif Newbie

So here's the deal

I was thirteen(th birthday to be exact) when I found out.

We went all-out hard-core style when it came to starting. Most people slowly get into it...

Well.

It sucked.

I cried after dinner everyday for a few months.

I stopped eating.

I kinda went into depression over oreos.

But in all honesty.

The first month is the hardest.

If you can be super strict for the first month, then the rest isn't too bad.

I mean. You're gunna miss the food. Most of us do.

But the hardest part is the first month.

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
      5

      Son's legs shaking

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

  • 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
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • 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!
×
×
  • 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.