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

Questions?!


lax87

Recommended Posts

lax87 Newbie

thanks for everyone being supportive. tonight is really hard for me though i got into wheat at outback which is suppost to be gluten free and now i have chaplips, and white spots on my nails, i am also going through all the physcological effects of it (sefl dought, feeling like i dont fit in with my friends, irritated, anxious, and the rest of the symptoms i have felt) this just really sucks and i hate having to live with it can someone help give me some tips that they do to help them get through it and get there minds off of it.

thanks

marco


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



Celiac.com Sponsor (A8-M):



GFBetsy Rookie

Marco -

Did you find any of those books helpful?

lax87 Newbie

hey betsy, i havnt been able to get to a local book store recently but my symptoms are getting better now since ive kicked out hoods and turkeyhill ice creams and a couple other things.

BamBam Community Regular

Marco,

What you are feeling and going through right now is exactly what I have been going through off and on for the past twenty years. I finally learned that being gluten free is exactly what makes me feel better. Several years ago I was so down on myself that I had to be hospitalized for a week or so to make sure I didn't do anything to myself. This past week I was glutened by something, and I finally figured it out, it was some summer sausage that friends gave us. My anxieties and fears and feelings of low self esteem was extremely high for about three days. I am now feeling better and getting my thoughts back in a normal pattern.

Marco, you can e-mail me at verber57@midrivers.com and I can help you with your diet the best I can. I don't know where you live and what kind of shopping your parents do, but the brands that I have are pretty popular, like Ragu Spaghetti Sauce. When you e-mail me, you could give me your address and I can e-mail you a list that I share with people that live in my area. The only thing is you need to read ingredients every time you shop. Several months ago it was a big deal because the cereal Cocoa Puffs were gluten free. Well, that only lasted about a month or so and the wheat starch was added back in. I bought 4 boxes without reading the ingredients and sure enough, I got the boxes with the wheat added back in. I was able to take them back to the store, but after time, you learn to read ingredients on everything you eat. As time goes on your family and friends will understand more, it took my brother and sisters a long time before they understood that gluten in my body is like poison. But now they don't even second guess what I eat, and when they visit, they eat gluten free right along with me. I'm not going to buy a bunch of stuff just for them to eat. The big thing you need to remember is that 99% of all regular cut meats (no added marinades or breading) are gluten free, all fresh, canned and most frozen vegetables and fruit are gluten free.

I'm hoping your parents understand how important it is for you to be totally gluten free. My husband went gluten free with me, we don't have any kids, and turns out he feels 100% better also. He was taking allergy medicine and stomach medicine every day, he had perscriptions and over the counter meds, and since he has been gluten free he very rarely takes any meds for allergies or stomach pain. Once in awhile he gets into gluten, and he knows when he does it too.

Anyway, e-mail if you like and I will help you the best I can. Ask your Mom and Dad if they have questions, and I will sure try and help you.

Bernadette

GFBetsy Rookie
hey betsy, i havnt been able to get to a local book store recently but my symptoms are getting better now since ive kicked out hoods and turkeyhill ice creams and a couple other things.

Marco -

I'm glad your symptoms have decreased. Keep up the careful work on your diet, and let me know if you want or need any more information.

Have a great weekend!

skore Newbie

Hi Marco,

At this point my comment is a bit redundant, but no, you're not alone. Gluten/wheat can play horrible mind games. Most of my symptoms were neurological. I am eating gluten right now because I want to get tested. A couple of weeks ago I had a sandwich (fri) pancakes (sun) and a donut (mon morning) - about an our after the donut I crashed - uncontrollable crying, HORRIBLY depressed, "why am I alive, i will never succeed, I will always be alone, I should run away and hide in a hole until..." type thoughts for 3 days! it upset my system so much I've barely been able to eat, insomnia, depressing and anxiety ridden dreams when i do sleep. I also get anxiety/ocd issues from the gluten. It is so frustrating! :angry:

Luckily the evening of that crash I realized - wait, this is from the gluten... I kind of deal with it this way, I call it 'bouncing my thoughts', basically I have this dialogue with myself - "self, calm down. this isn't genuine emotion/depression. this is gluten in your body." If that makes any sense. I always likened it to the gluten as a little devil - If I could stop and make myself realize that it was the "gluten devil" making me feel that way, bending my thoughts, then I could regain my head. Or at least give myself enough steadiness and clarity to make it through the glutening. Like I said, the last one was 3 days - that was rough.

PeggyV Apprentice

My daughter has suffered through out her teens with depression and compusive eating. When a nutritionist suggested she go on a glutten free diet, her life changed. She said a dark cloud was lifted from her life. I realized that I had spent years with many of the symptons, lately getting DH. I have also on a gluten free diet. It is tough following it, educate yourself on the internet and do the best you can.


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



Celiac.com Sponsor (A8-M):



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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • 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!
×
×
  • 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.