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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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tarnalberry

Gig Moving Feet W/o Wheat Seattle Walk

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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.

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Tiffany, that sounds great!

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

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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. ;-) )

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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!

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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

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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!

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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.

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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

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Way to go Tiffany--sounds great!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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