Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Gig Moving Feet W/o Wheat Seattle Walk


tarnalberry

Recommended Posts

tarnalberry Community Regular

This morning, at 9am (approximately :P ), my husband and I joined in with a bunch of other local celiacs for the GIG awareness walk "Moving Feet Without Wheat". We've got one of the organizers on here, and I'd *love* it if she could tell us a bit more of how it went, from an insider's perspective. From a participants perspective, I can say the following:

* We had great weather for a 5k walk/jog/run! Overcast and cool, but the rain from the night before held off.

* Lots of friendly people in bright red shirts so you knew who to say "Hi! Almost there!" to around the lake we were circling.

* A pretty good turnout at the food fair. My husband decided that he liked! the Glutino pretzles and the Kinnikinnik animal crackers and Mona's cake mix. That's a miracle!

* A camera guy from the local news station (who did, unfortunately, not look too happy at having to do 'the fluff piece').

* I helped put a guy at the Food Fair at Kinnikinnik's table trying to put together a Seattle gluten-free beer festival get in touch with the woman from Madison Market who's trying to get folks to go in with her to the distributor to get gluten-free beer.

It was a great morning chance to get out there and do a little something for the cause.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Tiffany, that sounds great!

mouse Enthusiast

I am glad your walk went great. What Lake did you walk around?

tarnalberry Community Regular
I am glad your walk went great. What Lake did you walk around?

Green Lake, in north-ish Seattle. (Well, north-ish to me, but I'm a transplant, and don't know the neighborhoods. ;-) )

Becky6 Enthusiast

Glad it went well! Belle and I had great weather for "Making tracks for Celiacs" at Boom Island in Mpls. They had great samples and Belle enjoyed a Dilly bar at 9am! LOL She loved meeting other kids who were just like her and was happy she could eat everything there!

burdee Enthusiast
Green Lake, in north-ish Seattle. (Well, north-ish to me, but I'm a transplant, and don't know the neighborhoods. ;-) )

TIFFANY: I was sooo looking forward to meeting you ... I wish you would have introduced yourself to somebody and asked for me ... I was the one with the red and white flower kerchief on her head who led the walk after Wayne Havrelly's tv speech kick off. I organized that entire GIG Celiac Awareness walk. We set up at 7am for rain with that 'rain emergency' white canopy. Obviously we had no rain, but I'm so glad we used that canopy which made the registration area sooo obvious and professional looking. All in all, I believe the walk was a huge success ... about 300 people. Not sure about the $$ raised for GIG ... at least $3000, but I didn't see sponsor donation funds raised. I know big prizes were awarded for funds raised, but I won't talk to GIG until tomorrow.

I think I gave you my phone number in a pm. Give me a call sometime and we'll do gluten-free/DF/SF lunch or something or just walk around Greenlake. I live 3 blocks away and walk that lake almost every day. :lol: For you 'foreigners' :lol: Greenlake is due north of 'downtown' Seattle. I suspect we will hold that annual walk at the same time and location next year ... if GIG wants me to organize the whole thing again. Did you like the red shirts and logo? My husband and I designed those over dinner one night. :)

SUE

tarnalberry Community Regular

I thought about trying to find you, but didn't know what you looked like, and everyone was busy, so I didn't want to interrupt anyone. I'm a little shy around people I haven't met in RL yet, ironically enough. :ph34r:B)

I enjoyed the shirt. When we went to Home Depot after the walk, I could see the clerk eyeing my husband's shirt, trying to figure out if he should 'just ask him'! :-) (He didn't. :( ) I overheard one person say they wished the shirts said celiac disease on the front. Eh... I liked the fact they were nice and simple! Plus, there were a bunch of sponsers I hadn't heard of, which suprised me!

If there's one next year:

1) I volunteer to help.

2) If you make it even half an hour later, you may get more people. I might have been able to get about five more people there with me, except for the hour. (Yeah, I know lazy people. :P Nah, they're just night owls.) If that's even an option.

If you're in that area, I presume you've been to the Sunlight Cafe, then, on the other side of the freeway on 65th? They've got food we can eat!!! :-)

I'm pretty busy this summer (realized that when I tried to figure out when I was going to go camping with friends), but I will try to give you a call in a couple weeks after the next flood of events goes past. :-)

Fab job, Sue. You rock!


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



Celiac.com Sponsor (A8-M):



BRUMI1968 Collaborator

I went to the Walk for Peace and Healing right after the Celiac walk. (Honestly, I was too tired and brain fogged to get to Seattle on time for the first walk - I live in Bellingham.) But the shirts were great; there were still some folks hanging about in them. I especially liked seeing the little kids running around.

Thanks to you guys. By next year I'm sure I'll have enough juice in the old blood stream to make it down on time. If you need more volunteers, or need someone in Bellingham to get folks down for the event, let me know.

burdee Enthusiast

Hi Tiffany:

Thanks for your feedback. Today I'm doing 'Monday Morning Quarterbacking' about what went well and what I can improve about the walk. I may change the shirt color for variety, but choose another bright, visible color like coral. I've already considered a slogan which will incorporate 'celiac' in the words.

I enjoyed the shirt. I liked the fact they were nice and simple! Plus, there were a bunch of sponsers I hadn't heard of, which suprised me!

THANKS FOR COMMITTING IN WRITING TO HELP WITH NEXT YEAR'S WALK! :lol: We'll talk more about what you can do when we meet for lunch. I pass the Sunlight Cafe on my walk to Whole Foods at least once a week. Can they accomodate gluten/dairy/soy free limitations? I would LOVE to find another nearby spot for lunch on days my hubby and I walk to Whole Foods. I worry that Whole Foods will kick us out when we arrive hungry and eat too many of their free samples. :lol: I'm not sure we could schedule the walk later and still get parking to set up in the morning. At 7:15am there were only a few spots close to the patio where we had to carry all the registration booth schtuph. However I will consider your suggestion. Many people did arrive after the group left to walk about 9:15am. We were late because the TV announcer and I were gabbing and lost track of time. :blink:

If there's one next year:

1) I volunteer to help.

2) If you make it even half an hour later, you may get more people. I might have been able to get about five more people there with me, except for the hour. (Yeah, I know lazy people. :P Nah, they're just night owls.) If that's even an option.

If you're in that area, I presume you've been to the Sunlight Cafe, then, on the other side of the freeway on 65th? They've got food we can eat!!! :-)

DITTO with the busy schedule, but maybe the 4 of us (you, me & the 2 hubbies) can meet for lunch on a Saturday or Sunday at Sunlight? Lemmeno ... I'm so sorry I missed you at the walk. We WILL do lunch! :)

SUE

I'm pretty busy this summer (realized that when I tried to figure out when I was going to go camping with friends), but I will try to give you a call in a couple weeks after the next flood of events goes past. :-)

Fab

Hi 'Bully4U':

Did you come to the walk with the Bellingham GIG group or on your own? Do you attend a support group? The Bellingham leader occasionally attends my SnoCoCeliac support group meetings. So I connect you if you don't already attend. Thanks so much for the walk feedback. I don't want to ask people to drive all the way from Bellingham to arrive before 7:30am to set up registration or help with food fair tables. HOWEVER, I would appreciate someone to help transport or attract more from the Bellingham area. PM or email me after you read this message and we can talk more ...

BURDEE

jenvan Collaborator

Way to go Tiffany--sounds great!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Nimsay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Confused about gluten challenge symptoms

    2. - Jacki Espo replied to Pamp8's topic in Dermatitis Herpetiformis
      2

      Dermatitis Herpetiformis

    3. - trents replied to Pamp8's topic in Dermatitis Herpetiformis
      2

      Dermatitis Herpetiformis

    4. - Pamp8 posted a topic in Dermatitis Herpetiformis
      2

      Dermatitis Herpetiformis

    5. - leenora replied to MagsM's topic in Related Issues & Disorders
      7

      Inflammation and Menier’s disease link?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,941
    • Most Online (within 30 mins)
      7,748

    kazzie21
    Newest Member
    kazzie21
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience with gluten is actually not unheard of! Some people with non-celiac gluten sensitivity (NCGS) or even celiac disease report an initial ‘honeymoon phase’ during a gluten challenge, where symptoms temporarily improve before worsening again. This could be due to your body adjusting or even a temporary immune modulation. Since you’re only 2.5 weeks into the challenge, it’s possible more symptoms could reappear if you continue. Celiac testing (bloodwork and endoscopy) is most accurate after a full 6 weeks of gluten, so sticking with it for now is wise. That said, your joint/tendon issues (especially the Achilles stiffness) are interesting—they can be linked to celiac disease or other autoimmune conditions (like rheumatoid arthritis or even reactive arthritis). Have you been tested for celiac antibodies yet? If not, that’s the next step. If the tests come back negative, NCGS or another immune-related issue (like FODMAP intolerance or mast cell activation) might still be at play. It’s also worth noting that recurrent miscarriage and elevated liver enzymes can be linked to celiac (it’s often underdiagnosed in women with ‘atypical’ symptoms like yours). But if celiac is ruled out, a rheumatologist or a gastroenterologist who specializes in immune-related GI issues might help explore other possibilities (like Hashimoto’s, Sjögren’s, or connective tissue disorders). Hang in there—it’s frustrating not to have clear answers, but you’re doing all the right things by paying attention to your body and pushing for testing. Keep us posted on how the rest of your gluten challenge goes!
    • Jacki Espo
      Hi there @Pamp8  yes I've had dermatitis herpetiformis and a negative test for celiac and a negative biopsy. I had stopped eating gluten before taking the test.  I have had an inconclusive genetic (?) test.  I developed the same all body rash.  It was one of the worst experiences of my life and I am sorry you're experiencing it.  What helped me: 1). I stopped eating oats of any kind. 2). I also took some anti-biotics that were not prescribed for dermatitis herpetiformis but I read they could help. 3). Salty food exacerbates it for me.  Now I have a small flare up any time I get cross contamination like from french fries or a shared grill at a restaurant but it's not as bad as it used to be.  Wishing you relief soon. 
    • trents
      Welcome to the forum, @Pamp8! As to your first question, it is possible to have only the epidermal form of celiac disease but it is not common. Most people who have dermatitis herpetiformis also have damage being done to the villous lining of the small bowel.  As to your second question, most likely you are getting some gluten contamination from an unknown source on occasion that you are unaware of and are not suspecting. It could be something like in a medication or supplement you are taking or an oral hygiene product you are using or a spice you are using in your cooking. You might also look into a low iodine diet as iodine is known to exacerbate dermatitis herpetiformis. As to your third question, many who suffer from dermatitis herpetiformis find it is a stubborn problem and difficult to completely control.
    • Pamp8
      I'm new here, although in the past I know I've read some of the messages.   My doctor and I have long suspected that I have celiac. I have several other autoimmune illnesses. But, my celiac biopsy was negative, so I started eating a lot more gluten.  Over the last several years, I've had minor bouts of an extremely itchy rash that I was correlating to gluten, but it wasn't very bad and would improve in a short amount of time. Last year, I had a bout that was a bit worse, but it went away rather quickly, so I didn't think too much about it. Fast forward to this year. I have had a REALLY BAD case of it, for a few months, so I went to a dermatologist, and she diagnosed dermatitis herpetiformis without a biopsy. It was pretty obvious to her that it is dermatitis herpetiformis, but she said that if I wanted her to, she would do a biopsy. She said that I have just become more sensitized over time. She prescripbed Dapsone gel, which helps a lot, but I run out of it long before I'm eligible for a refill. So, I am going CRAZY. It is on my arms, legs trunk, everywhere, and it itches like chiggers. If I get even the slightest bit sweaty, it is so unbearable. I've been 100% gluten free since April, but it keeps flaring up. (I've been under intense stress, too.)  My questions are:  1.) Do many people have celiac without a positive celiac biopsy?  2.) How long will the dermatitis herpetiformis persist, even though I'm 100% gluten free? 3.) Is my story a common one? Thanks so much!
    • leenora
      P.S. I also suffer from Meniere's and Hashimoto's thyroid disease, osteopenia since 40 y.o. These all were diagnosed before the Celiac Disease! And I believe it is all interconnected.
×
×
  • Create New...