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20 Comments

  1. 1

    Cookie's Mom

    You could try frequenting restaurants that serve gluten-free food. I’m not sure where you are in Hawaii, but apparently Coconut Fish Cafe in Kihei on Maui serves great gluten free tacos! We are heading to Maui on Wednesday and I will be checking this place out! You could also try attending events put on by the celiac association or join a celiac support group (http://www.enabling.org/ia/celiac/groups/grpus-hi.html#Contacts). I found this helpful site: http://www.glutenfreemaui.com/ Follow the food! Oh, and tell every random stranger that you meet that you are gluten free when you get the chance. That can lead to some connections. Good luck and good health to you!

    Reply
  2. 2

    Elisabeth

    I’d start with acquaintances from work, honestly. We moved last year from the Great Lakes region to Florida last summer, so we’ve been in a similar situation, and we made our friends through my husband’s job.

    I found it easier, in some ways, because I started eating GF about 6 months before the move, and a lot of our friends were so accustomed to my non-GF eating that they would often forget. Now when we go out, the new friends we have made here are more accommodating, because its the only way they’ve ever known me. Also, the regional differences made it easier for me to find places to go — there are more restaurants that place an emphasis on fresh, local food here (as there should be in Hawaii — they grow amazing produce there year round!) that there was in Ohio, and a greater ethnic diversity here means there is more variety available, as there should be in Hawaii. Also, all the tourists with different eating requirements mean the restaurants are aware and accommodating — you’d probably find a similar situation there.

    Reply
  3. 3

    Elisabeth

    And frankly, I can’t imagine even trying to be friends with people as inflexible as the people you were trying to socialize with.

    Reply
  4. 4

    Rachel

    My personal experience has been to focus on what YOU like to do, or what you might like to do. Maybe you’ve always wanted to learn how to paint landscapes. Maybe you want to get into bird watching or hiking. There are literally clubs and groups for everyone. A quilting circle, a fantasy football league. Meantime, try placing an ad on craigslist groups, see if you can find fellow Celiacs.

    Here is a list of contacts in Hawaii, the list may not be current, but it’s worth a shot:

    Resource Unit
    City: Kaneohe (Oahu Island)

    Contacts:
    Charlotte R. White
    44-021 Aumoana Way
    Kaneohe, HI 96744
    Internet:
    Charlotte R. White, whitecha@hawaii.edu
    Charlotte R. White, whitehaw@hula.net
    Updated: 14 Jan 1998
    Resource Unit
    City: Kealakekua (Hawaii Island)

    Contacts:
    Kathryn Ogata
    PO Box 93
    Kealakekua, HI 96750
    Internet:
    Kathryn Ogata, keogata@ILHAWAII.NET
    Updated: 14 Apr 1999
    Resource Unit
    City: Kahului

    Contacts:
    Amanda Schaefer
    Internet:
    Amanda Schaefer, amanda@glutenfreemaui.com
    Gluten Free Maui Blog http://www.glutenfreemaui.com
    Updated: 17 Mar 2010

    Also, you might try your local hospital, see if they know of a group. It’s tough, and you get tired of the ignorance people have toward the disease. But, most of the time that ignorance is merely lack of knowledge, without a stigma attached. People just don’t know.

    Best of luck to you!

    Reply
  5. 5

    Darlena

    I love http://www.meetup.com to find meetups in areas that interest me. I joined 2 hiking groups through this website.

    Reply
  6. 6

    Alice

    That sucks! If you’re comfortable hosting people, you could always try inviting them over to your place for dinner. Alternatives could be a movie / play / whatever, followed by dessert and coffee somewhere, so you don’t have to discuss safety early on in things.

    I also think that some of this depends on when you’re bringing the GF issue up – I have a friend who’s turned down dates with people on special diets (Paleo, etc.) when she’s worried that they’ll be preachy about it. Have you tried suggesting one of your safe restaurants without the explanation, or finalizing plans at another restaurant, then bringing up the BYO note once the details are settled? Celiac is *nothing* to be ashamed of, but since GF has gotten so much fad-related attention lately, it may be easier if it comes up later on in your acquaintance.

    Of course, you may just be meeting a bunch of inflexible folks, in which case the only consolation is that you’re removing the duds from the friendship pool early on in things. :) Good luck!

    Reply
  7. 7

    IrishHeart

    Aloha Julie may be of some help.

    Jules!! are you there? If she does not show up soon,
    we can shoot her an email. :)

    I once gave her all those celiac support group contact numbers in Hawaii too—and none were still valid, she reported.

    I find the best way to get past the dinner thing is to invite people to my house for dinner. No one turns down good cooking!

    Do not give up–someone is bound to take you up on your offer, hon!

    Reply
  8. 8

    Rebekah

    Ok I’m so new to this whole blog world, I’m not even sure where this comment will end up….but I need some help! I have three sons, two of which I feel sure are battling Celiac. They are ages 3 and 11 months. Their symptoms include: frequent acidic BMs that literally burn their skin off leaving open, bloody sores, occasional vomiting with no reasonse explanation, pretty severe bloating after meals, daily complaints of a stomache ache and headache (my three year old, obviously the other can’t communicate), rash on legs, and both of them were given a “failure to thrive” diagnosis at some point due to weight loss/failure to properly gain. My three year old has even had a “partially positive” blood test (whatever the heck that means), but the doc isn’t convinced hemis symptoms are bad enough to do the biopsy. So…do I push for this diagnosis? Or do I just take matters into my own hands and go gluten free? THANKS SO MUCH! And good luck to you all. It’s tough feeling so helpless as a mom, and it seems I can’t find anyone to hear me out about this!

    Reply
    1. 8.1

      Gluten Dude

      Rebekah…get yourself to your pediatrician immediately and if that doesn’t do the trick, try to find a GI in your area who is highly recommended. I won’t offer any medical advice, but please don’t hesitate.

      Reply
      1. 8.1.1

        Lisa M

        Oh my, In the world where 2nd opinions are the norm it seems i would switch docs and or ask for another GI doctor. I read that the squeaky wheel gets the oil so push for it if you want it done, and the books seem to suggest pushing for a biopsy it helps to confirm a diagnosis. I have a half positive diagnosis. I have tested positive for the endomysial antibodies, (note here an earlier celiac screen was negative) and so it is like a yes without the biopsy confirmation, I have to wait for that one. but check with your doctor about your sons bloodwork and ask for the bloodwork results, my doc printed them off for me but there may be different rules for that in the USA.. Best wishes.

        Reply
        1. 8.1.1.1

          Rebekah

          Thank you Lisa! We have an appointment with a new pediatric GI April 1st! The other doc has sent all my son’s records to the new one, so I’m hopeful we will get this diagnosed. Hugo (my son) had a negative test too, then a second one was positive. I don’t understand all the science behind it, so it makes no sense to me that he is “partially positive”?!
          My husband wants to know what I’ll do if a biopsy comes back negative since I’m so convinced it is celiac?! Haha! You guys have given me confidence that I’m doing the right thing. Thanks so much! And good luck to you Lisa!

          Reply
  9. 9

    Rebekah

    Thanks for your reply! We are seeing a pediatric GI now, but I’m not sure she gets it. I just don’t want to be the crazy mom who is trying to convince everyone her kids are sick…but, they are! I’m going to try to research someone new to see. Thanks again!

    Reply
    1. 9.1

      IrishHeart

      Failure to thrive, all those symptoms….. and a positive DX?
      There is no such thing as “partially positive” for celiac–that’s like “kinda pregnant”!!! Positive means positive.

      This doc doesn’t see this as celiac?? oh hon–!!

      You have to see a NEW GI DOC …..ASAP!!!!!!!!

      Reply
  10. 10

    Rebekah

    These are my thoughts exactly! I just wanted some opinions of people who have dealt with this. Why don’t people take this more seriously? My middle son has had such a difficult three years, he just seems miserable. And now my youngest…ugh! I can’t let this go on any longer! Thank you so much for the confidence boost that I’m on the right track. :)

    Reply
    1. 10.1

      IrishHeart

      You’re doing the right thing, Mom! Please get another GI doc’s opinion ASAP.

      Where do you live? (just the city and state) or if you feel uncomfortable saying it publicly, just tell the GDude privately via email and he can email me.

      Together, we can try to help you find the best celiac-savvy doc in the area.

      Reply
    2. 10.2

      Sue Duby

      Please website: breakingtheviciouscycle.info Critical for U Rebekah to start the children on this program. I’m celiac & it worked for me & grandkiddies. It is Fntastic & so is the book by the same name. Blessings💥

      Reply
  11. 11

    Rebekah

    We live in Abingdon, Virginia. It’s a pretty small town in the southwest region. We’re willing to travel to see someone who would help though. You become accustomed to doing that when living in this part of the country! Thanks SO much. I appreciate your interest and help!

    Reply
    1. 11.1

      IrishHeart

      start here:

      http://uvahealth.com/services/digestive-health/support-resources/celiac-support-group

      Call and ask them to recommend a celiac GI specialist in your region–or closest to you. Get all your children’s medical records and lab test results together, including the positive celiac test results so you can go in armed and ready.

      Hope this helps!

      Reply
  12. 12

    Rebekah

    I’m going to get started on this ASAP! Thanks again, and again!! I’m sure I’ll be visiting this site very often in the future. Best wishes to y’all!

    Reply
  13. 13

    AmandaonMaui

    Which island are you located on? I’m on Maui, and I’m thinking of putting together a support group. I hope you’ve found some friends since March, but if you’re on Maui let me know.

    Reply

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