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

Need To Rant

basslady

Recommended Posts

basslady Newbie
basslady
Posted

A few weeks ago I bought a medical I.D. bracelet saying that I have celiac along with other medical issues. A week ago in orchestra a guy in my section saw me take it off. He said "Is that a gluten free bracelet?" I had no problem with him asking me. At that time it was more of a question and I have no problem educating people about celiac. But then yesterday he said very loudly "Is that your gluten free bracelet?" Everyone turned and looked at me. AHHHH Why did he have to draw attention to a bracelet that I have been wearing for weeks and draw attention to me being "different" from everyone. And the way he said it was worse. It was like he was mocking me for wearing it. I don't chose to have celiac. I need to wear it so that if something happens they wont give me glutenised medication. If i am exposed to it I have major asthma problems. The next time he does this I am going to flip.

Thank you for letting me rant.

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

Celiac.com Sponsor (A8-M):


Monklady123 Collaborator
Monklady123
Posted

What kind is it? I mean, what style. I have one (not for celiac) that's made for women, and it's got beads and sparkly things on it. lol.. So if you had one like that the next time this guy -- or anyone -- says anything you could say "yes it is, I just got this new style, thank you for noticing! Isn't it pretty?" Kill 'em with kindness, as my mother used to say.

And who knows, you might help someone else. I actually had a woman notice mine once at our local pool. She said that her 7-year-old daughter had just been diagnosed with diabetes and she needed a bracelet but didn't like the chunky ordinary ones. (why her doctor didn't tell her about another style I don't know, but that would be another post...the doctor rant one.) So I told her where I'd gotten mine. :)

But, I totally understand what you're saying. I still hate the "standing out" part of this gluten free thing. Having to always talk to waiters, and trying to figure out how to do communion in church, and in general always being different. When I get to thinking too much like that I remind myself that at least our illness is 100% treatable, and without medication too!

Diane-in-FL Explorer
Diane-in-FL
Posted

Where do you get the bracelets? :)

Monklady123 Collaborator
Monklady123
Posted

Where do you get the bracelets? :)

I got mine at Lauren's Hope (laurenshope.com) :)

Diane-in-FL Explorer
Diane-in-FL
Posted

I got mine at Lauren's Hope (laurenshope.com) :)

Thank you!

collgwg Contributor
collgwg
Posted

omg thats awful people just do not understand at all

my hubby said oh you still can eat that fish we have with the batter on it just wipe off the batter

like that would help they just dont understand that gluten is quite dangerous and some times worse in others i have found

now for this asthma symptoms ever since i got sick feb 23 i have realy bad asthma symptoms and needing puffers now the dr said its because i smoke,

is it because of being glutenated?

i have been gluten free for about 4 days and i am finding that this cough is starting to break up some i can tell its not a cold and i can tell if i consume gluten cause the cough and of course insides go right into spasums

Jestgar Rising Star
Jestgar
Posted

my hubby said oh you still can eat that fish we have with the batter on it just wipe off the batter

Dip his in the kitty litter box and tell him he can just wipe of the coating. :P

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

Celiac.com Sponsor (A8-M):


bigbird16 Apprentice
bigbird16
Posted

Dip his in the kitty litter box and tell him he can just wipe of the coating. :P

Love it! LOL

K8ling Enthusiast
K8ling
Posted

I have two bracelets from Laurens Hope and I LOVE mine. I wear mine for Asthma and had celiac put on it too... It's barely noticeable.

collgwg Contributor
collgwg
Posted

lol kitty litter

basslady Newbie
basslady
Posted
  • Author

Thank you all. Consuming gluten does make my asthma worse. I can still have a problem without gluten but gluten triggers it when I am exposed. I have a pretty bracelet. The chain is made from heart rings. I like it. I bought it of off Amazon. I love the idea of thanking him for noticing. Haha I will do that the next time he brings it up.

Darn210 Enthusiast
Darn210
Posted

Well, my friends here will tell you that I'm a smart...ummmm...alec (yeah, that's it) and I would probably have to say something like . . . "You've already asked about my bracelet twice. What's up with the memory issue?"

LOL on the kitty litter.

Takala Enthusiast
Takala
Posted

Those are very attractive bracelets !

You could get one of those inexpensive colored silicone rubbery "livestrong" bracelets and have it handy in your pocket for the next time Mr. Inept makes a comment. (if you wanted to take the joke even further, get one of the "power balance" holograph knockoffs that is supposed to have magical powers for athletes). Whip it out and hand it to him with a big flourish, and announce that This Protective Power Band Will Make the Sound Waves Keep HIM from Getting Celiac from sitting near you. ;)

Archived

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

Go to topic listing

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • 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
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      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.