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

Hilo ,hi


johnsmom

Recommended Posts

johnsmom Newbie

hay anybody live in or near hilo and know of any meetings? or you want to start one?

new to the gluten free world, john's mom


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



Celiac.com Sponsor (A8-M):



kenlove Rising Star

Hi,

I live in Kona and have yet to hear of otehr celiacs in Hilo -- Only know of 4 of us on the west side.

Still someone must be buying all the gluten-free foods at the health food store across from Puainako.

Maybe you can post something on the board there.

If you find any gluten-free friendly restaurants on that side please let me know too. The last time I drove over about ll I could find to eat were bananas!

take care

hay anybody live in or near hilo and know of any meetings? or you want to start one?

new to the gluten free world, john's mom

johnsmom Newbie

kenlove,

mind if i just call you ken or even kelly, as i am married? with 2 kids.

Any how , , , ,, next time you are on this side eat tai food at the one across the street from under da banyon . they have a hard name to say but i'll put thier

# 933-2424 so you could bounce off them the ing . they use in which dishs . their food is so good i usually do it take out but they do have 3 styles of eatting in, like ouside , in the middle or very cozy dim lit back section. i eat it at home 'cause i hate to waiste a drop and i love their soups . so we can eat it twice as a family of 3 ...if my girl is eatting elsewhere . then drink the gravey or put it on a packed lunch to head to work once or twice . annother choice is maui taco in prince kuhio plaza , or in a pinch i eat the steamed veggies from the little okazuya style lady.

you know there is wheat in the steamed vaggies at panda express? the only item there wheat free is egg flower soup, or white rice with seet sour sauce . ( i laughed at that 'cause mcdonalds gives a way hand fulls of those sweet sour packets...). i have yet to try their soup but had it at hilo, rice noodle soup., it's on kinoole and my stomck didn't like something so maybe the bokchoi.

i have so many questions .

do you like furikaki? did you know 11 of the 12 or so styles of it have dried shoyu granuales and there fore wheat in it ? are you real strict with your eatting style? i react on what seems like just a teaspoon size or less portion of something . did you know licerice is off limits ? did you know that meens lee hing mui powder is there fore now on my do not eat that again list.

on the other hand if you used to love oreos the ones from glutenfree mall are really good they got the outside down so perfectly but just missed the boat a little on the inside i;m tempted to use a butter knife and scrape the whites from 4 real ones and eat 4 of mine doctored up....sounds funny but a good fix of 4 i think would relly make me happy some days.

i ate one oreo just after doc said this is what i need to do and i reacted .

thanks so much for the bulliton board idea funny i hadn't thoght of it myself as that's where i just sent this colledge age friend to look for rooms to share or apartments that stdents can aford to walk to and from the campus .

hope all is well with you . how long have you been gluten free? say anything i'll read any thing you care to write. just be truth full. you know like they say Keep'in it real"

love and aloha,nancy

kenlove Rising Star

Hi nancy,

Oh dont worry, I'm married too -- 32 years worth. ken Love is my real name. Next timeyou look in the health food store and see the poster with all the fruit pictures you'll see my name. I make the posters and work for UH.

I spend a month or 2 in japan each year and get furikake which I know the contents of.I qalso make my own at6 times which is pretty easy. jsut depends what you like in it.

Last time I was at the Thai place place and asked them to make sure there was no flour in the food, they toook the flower off the table. I'm extremley sensitive so I never take chances. Been gluten-free for 3+ years now.

have been working in europe for more than a month and it will good to get home next week

take care

kenlove,

mind if i just call you ken or even kelly, as i am married? with 2 kids.

Any how , , , ,, next time you are on this side eat tai food at the one across the street from under da banyon . they have a hard name to say but i'll put thier

# 933-2424 so you could bounce off them the ing . they use in which dishs . their food is so good i usually do it take out but they do have 3 styles of eatting in, like ouside , in the middle or very cozy dim lit back section. i eat it at home 'cause i hate to waiste a drop and i love their soups . so we can eat it twice as a family of 3 ...if my girl is eatting elsewhere . then drink the gravey or put it on a packed lunch to head to work once or twice . annother choice is maui taco in prince kuhio plaza , or in a pinch i eat the steamed veggies from the little okazuya style lady.

you know there is wheat in the steamed vaggies at panda express? the only item there wheat free is egg flower soup, or white rice with seet sour sauce . ( i laughed at that 'cause mcdonalds gives a way hand fulls of those sweet sour packets...). i have yet to try their soup but had it at hilo, rice noodle soup., it's on kinoole and my stomck didn't like something so maybe the bokchoi.

i have so many questions .

do you like furikaki? did you know 11 of the 12 or so styles of it have dried shoyu granuales and there fore wheat in it ? are you real strict with your eatting style? i react on what seems like just a teaspoon size or less portion of something . did you know licerice is off limits ? did you know that meens lee hing mui powder is there fore now on my do not eat that again list.

on the other hand if you used to love oreos the ones from glutenfree mall are really good they got the outside down so perfectly but just missed the boat a little on the inside i;m tempted to use a butter knife and scrape the whites from 4 real ones and eat 4 of mine doctored up....sounds funny but a good fix of 4 i think would relly make me happy some days.

i ate one oreo just after doc said this is what i need to do and i reacted .

thanks so much for the bulliton board idea funny i hadn't thoght of it myself as that's where i just sent this colledge age friend to look for rooms to share or apartments that stdents can aford to walk to and from the campus .

hope all is well with you . how long have you been gluten free? say anything i'll read any thing you care to write. just be truth full. you know like they say Keep'in it real"

love and aloha,nancy

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.