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

Anyone From The Kansas City Area


sandy-swanson1103

Recommended Posts

sandy-swanson1103 Newbie

I was just wondering if there was anyone from the Kansas City area on here. I am new with Celiac Disease. My 7 year old daughter has it, and I have no clue what I am doing!!

Thanks


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I was just wondering if there was anyone from the Kansas City area on here. I am new with Celiac Disease. My 7 year old daughter has it, and I have no clue what I am doing!!

Thanks

Me! Me! Some would say I don't know what I'm doing though. I live in Johnson county, KS

sandy-swanson1103 Newbie

Me! Me! Some would say I don't know what I'm doing though. I live in Johnson county, KS

I live in Johnson County Ks also!!!!! Did you just recently get diagnosed? Just curious as to why some people would say you didn't know what you were doing. LOL I am in that boat right now. I am still learning everything for my daughter. Where in Johnson county do you live?

kareng Grand Master

I live in Johnson County Ks also!!!!! Did you just recently get diagnosed? Just curious as to why some people would say you didn't know what you were doing. LOL I am in that boat right now. I am still learning everything for my daughter. Where in Johnson county do you live?

I was being funny. Didn't work? I'll IM you.

sandy-swanson1103 Newbie

I was being funny. Didn't work? I'll IM you.

Oh no. LOL I kinda figured, but I wasn't for sure. LOL I am new to this, so I will try and IM you back. Thanks!

  • 1 month later...
Branny Newbie

I'm over in Blue Springs, just SouthEast of the big city and have had an allergy to Gluten all my life, but only found out about two years ago what I was trying to fight. I've learned alot in this time and so if you need anything, please don't hesitate to drop me a line.

  • 1 month later...
ToriBlake Newbie

Hi everyone! I live in Shawnee and am also newly diagnosed (3 months) and am dying to find some other people in my same situation! I'm struggling to find places to eat out, where the best places to do grocery shopping are, hidden gluten-free gems, and people to talk with in general! Do any of you go to a support group or what is the best way you've found to manage a gluten-free lifestyle?


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



Celiac.com Sponsor (A8-M):



  • 3 months later...
GermanGirlWithCurls Newbie

Hi everyone! I live in Shawnee and am also newly diagnosed (3 months) and am dying to find some other people in my same situation! I'm struggling to find places to eat out, where the best places to do grocery shopping are, hidden gluten-free gems, and people to talk with in general! Do any of you go to a support group or what is the best way you've found to manage a gluten-free lifestyle?

If you have a Hy-Vee in your area, most of them have newly expanded their Health Market sections, complete with a Gluten-Free section. I live just a few miles north of downtown K.C., and the Hy-Vee I shop at is great. They carry a very full line of Bob's Red Mill gluten-free flours and mixes, Pamela's baking mixes, lots of cookies and breads (including Udi's, which is the best pre-made gluten-free bread you can get), crackers, pastas, soups and gravy mixes all gluten-free, and really a lot of stuff I wouldn't have time to list. Although the prices can get pretty high is you are purchasing too many pre-made items. Best to buy the flours and learn how to make your own. There are tons of other great gluten-free blogs (Gluten Free Goddess, Gluten Free Mommy, Gluten Free Cooking School...just a few of my faves) from where I've really learned to bake some great muffins, cakes, casseroles, etc. Even my husband will eat some of these things, and he thinks going gluten-free is a waste of time. :-) I don't have Celiac, but I do have a very sensitive digestive system (blood type AB, we are complicated) and found that switching to a gluten-free lifestyle really helped a lot...AND I lost weight.

Try (Company Name Removed - They Spammed This Forum and are Banned) for purchasing Bob's Red Mill and other great gluten-free flours and mixes in bulk at discount prices...Amazon offers free shipping for orders over $25. I believe this how some of the serious bakers can really afford to do all the gluten-free treats and breads.

I would also be interested in a support/meet-up group. Has anyone tried searching the MeetUp groups? Or maybe put out a Craigslist ad to try and get one together on your side of the city.

GFreeMO Proficient

Kansas City here too! Way out in the boonies in Platte County. (By Snow Creek)

  • 2 months later...
majones Newbie

Hi everyone! I live in Shawnee and am also newly diagnosed (3 months) and am dying to find some other people in my same situation! I'm struggling to find places to eat out, where the best places to do grocery shopping are, hidden gluten-free gems, and people to talk with in general! Do any of you go to a support group or what is the best way you've found to manage a gluten-free lifestyle?

My favorites are Whole Foods (the one on 91st and Metcalf seems more gluten-friendly) and Hyvee. Their new gluten-free section is amazing. Walmart brand stuff also will say "naturally gluten free" on it most of the time. So helpful!

Where do you go?

kareng Grand Master

My favorites are Whole Foods (the one on 91st and Metcalf seems more gluten-friendly) and Hyvee. Their new gluten-free section is amazing. Walmart brand stuff also will say "naturally gluten free" on it most of the time. So helpful!

Where do you go?

I live by you! I usually go to the WF on 119 th just for bread. I go to Hy Vee on Stateline or 135 th & Antioch for most stuff. Target, Walmart & Hen House have a few things like pasta to grab while I'm there.

I just saw that Minsky's is doing gluten-free pizza but I haven't quizzed them yet on topping procedures.

Pamela B. Apprentice

Hi; I just joined the forum. I'm in Grandview!

  • 3 months later...
MelissaBe123 Newbie

I've been looking for people in the Kansas City area too! I'm in Prairie Village and wonder if there is any support group in town.

sa1937 Community Regular

I'm jealous...I wanna move to Kansas City! :lol:

kareng Grand Master

I've been looking for people in the Kansas City area too! I'm in Prairie Village and wonder if there is any support group in town.

There is but...I never go :ph34r:

Open Original Shared Link

I'm jealous...I wanna move to Kansas City! :lol:

Come on! I'll help you find an apartment. Actually,, oldest son is going off to college....

  • 4 months later...
isntsheclever Newbie

Hi! :D I'm new to the forum. I live in Lees Summit!

I am not diagnosed with anything yet... But I am in the process of trying to get things figured out...

kareng Grand Master

Hi! :D I'm new to the forum. I live in Lees Summit!

I am not diagnosed with anything yet... But I am in the process of trying to get things figured out...

Welcome, Lee's Summit!

NateJ Contributor

Hi! :D I'm new to the forum. I live in Lees Summit!

I am not diagnosed with anything yet... But I am in the process of trying to get things figured out...

Yes. welcome from STL, cross state neighbor.

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.