Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Green Bay Wi
0

18 posts in this topic

I am newly diagnosed. I just learned a co-worker of mine is as well, and she is really struggling. Any groups in this area?

0

Share this post


Link to post
Share on other sites


Ads by Google:

If there isn't a group we should start one because I'm in Green Bay too and newly diagnosed.

0

Share this post


Link to post
Share on other sites

I'm down here in Berlin (West of Oshkosh). But wanted to add to the Wisconsin presence here. :lol:

0

Share this post


Link to post
Share on other sites

Yay Wisconsin!! Oshkosh isn't so far!! We could meet in Appleton! Oh wait it snows there too... lol we could meet in Appleton in the summer :lol:

0

Share this post


Link to post
Share on other sites

Yes, maybe by then I won't be as sensitive to CC and will have healed enough to be able to eat out again, then I could meet at a restaurant. :)

Unfortunately this is a far off dream for me at the moment. :(

Still good to know there are two of you not so far away! :D

0

Share this post


Link to post
Share on other sites




Finding out today that I have the DQ2 gene hit me like a ton of bricks. I don't know if before it didn't seem real but today talking to the doctor and realizing that this was for life made me hit the wall. I'm scared I think because even though it sounds easy to someone that doesn't have this it's not easy to stay gluten free and give up everything that you like to eat. Well not everything but it seems like it from this newbie perspective. I'll be fine just have to come to terms with it and realize that I'm not feeling as sick after just a week being gluten free and remembering that I think will help me to get over this emotional roller coaster I'm on right now... WOW knocked the wind out of my sails today.. never saw it coming either..

:huh:

0

Share this post


Link to post
Share on other sites

If it helps I think you are not alone. Not by a looooong shot.

I've been doing a ton of research and been on lots of forums over the past 5 months and I see a bigger picture. All the things gluten causes in us are also problems for the general populace.

IBS

Hypothyroid

Migraines

MS

Lupus

DH

Eczema

Bloating

Abdominal Pain

Excess Gas

Vomiting/Upset Stomach

Depression

Schizophrenia

Brain Fog

Tiredness

C/D

Feeling like you want to jump out of your skin

Irritability

Mood Swings

Cold feet/hands

Menstrual Cramps/PMS

Infertility

Poor balance

Anxiety/Panic Attacks

Diabetes

Gallbladder problems

Hysterectomies

Calcium Malabsorption

Allergies

Adrenal Fatigue

Heartburn

Indigestion

Night Sweats

Insomnia

Night Terrors

Restless Leg Syndrome

Thin/Losing Hair

Heart Disease

Crohn's Disease

Neuropathy

Ulceritive Colitis

Diverticulitis/osis

Alzheimer's Disease

Rheumatoid Arthritis

Osteoporosis

Poor Teeth Enamel

Appendicitis

Paranoia

And those are literally just off the top of my head, I'm sure I'm missing some. Unless I got glutened and am just being paranoid. :P

In short, no one can handle this stuff. DQ2 or DQ8 or DQBlizzard There is something wrong or faulty with their gene testing. I'm not sure what they think they are finding or how they got confused but there is a big picture here that the Medical profession at large is missing.

What we call Celiac is one small manifestation of a larger Gluten Intolerance.

So be happy that you figured it out in time to stave off a colon bag, or Alzheimer's or before you can no longer walk from RA, or had your thyroid/gallbladder/uterus/appendix yanked. :)

The glass is overflowing Judy3. :)

I am so very glad that you uncovered what was making you sick and that you are feeling better. :D

0

Share this post


Link to post
Share on other sites

If it helps I think you are not alone. Not by a looooong shot.

I've been doing a ton of research and been on lots of forums over the past 5 months and I see a bigger picture. All the things gluten causes in us are also problems for the general populace.

IBS

Hypothyroid

Migraines

MS

Lupus

DH

Eczema

Bloating

Abdominal Pain

Excess Gas

Vomiting/Upset Stomach

Depression

Schizophrenia

Brain Fog

Tiredness

C/D

Feeling like you want to jump out of your skin

Irritability

Mood Swings

Cold feet/hands

Menstrual Cramps/PMS

Infertility

Poor balance

Anxiety/Panic Attacks

Diabetes

Gallbladder problems

Hysterectomies

Calcium Malabsorption

Allergies

Adrenal Fatigue

Heartburn

Indigestion

Night Sweats

Insomnia

Night Terrors

Restless Leg Syndrome

Thin/Losing Hair

Heart Disease

Crohn's Disease

Neuropathy

Ulceritive Colitis

Diverticulitis/osis

Alzheimer's Disease

Rheumatoid Arthritis

Osteoporosis

Poor Teeth Enamel

Appendicitis

Paranoia

And those are literally just off the top of my head, I'm sure I'm missing some. Unless I got glutened and am just being paranoid. :P

In short, no one can handle this stuff. DQ2 or DQ8 or DQBlizzard There is something wrong or faulty with their gene testing. I'm not sure what they think they are finding or how they got confused but there is a big picture here that the Medical profession at large is missing.

What we call Celiac is one small manifestation of a larger Gluten Intolerance.

So be happy that you figured it out in time to stave off a colon bag, or Alzheimer's or before you can no longer walk from RA, or had your thyroid/gallbladder/uterus/appendix yanked. :)

The glass is overflowing Judy3. :)

I am so very glad that you uncovered what was making you sick and that you are feeling better. :D

Thanks for your support. I read through that list of yours and I think I've been diagnosed with about half of those things if not more over the years but no one every put it all together.. But you're right. Now I know and I can move on gluten free! Look out world this DQ2 woman is coming and it ain't gonna be pretty!!! :D (picturing myself as a super woman with a DQ2 embroidered on my chest and carrying a DQBlizzard!! no cookie dough in it though!)

0

Share this post


Link to post
Share on other sites

I am also a Celiac living in Green Bay. My insurance wouldn't cover a nutritionist (celiac disease is not a covered diagnosis) and I don't have the money to pay for it so I have been looking for some support group, and it was my understanding that there was one at St. Mary's but there has been nothing on their calendar about it. There is one that meets at Appleton Medical Center in Appleton as well, although I'm not sure when.

0

Share this post


Link to post
Share on other sites

Thanks for the info Cutter! It looks like the 3 of you GBers could start a group if there isn't one. :)

0

Share this post


Link to post
Share on other sites

I'll do some checking around town and see if there are any already in flight. My insurance won't pay for the dietician unless it's diabetes or eating disorder related but fortunately (for this once) I have diabetes as well so I'm going to tell them to bill it under diabetes training so it gets paid. It really is because I have to learn how to eat all over again... rice and my blood sugar don't get along too well.

I'll be in touch!!

*Judy

0

Share this post


Link to post
Share on other sites

Hi all,

I live in Green Bay too and was diagnosed about 6 months ago. I did make it to one of the support group meetings at St. Mary's and it was extremely unhelpful. I think that the group is now defunct. I would love to meet up for an informal "support" group from time to time. There is now a gluten-free restaurant open in Ledgeview called Caffe Naturally which would be a great place.

Let me know if you're interested!

Jess

0

Share this post


Link to post
Share on other sites

Thanks for the heads up on Caffe Naturally! It is nice to see that there are restaurants starting to open up in the area. :) A trip to Green Bay may be in order one of these days. :P

Also wanted to let folks know about this FB group:

East Central Wisconsin Gluten Free Group

Worth liking if you are an FB user. ;)

0

Share this post


Link to post
Share on other sites

I am also a Celiac living in Green Bay. My insurance wouldn't cover a nutritionist (celiac disease is not a covered diagnosis) and I don't have the money to pay for it so I have been looking for some support group, and it was my understanding that there was one at St. Mary's but there has been nothing on their calendar about it. There is one that meets at Appleton Medical Center in Appleton as well, although I'm not sure when.

There is a Celiac Group that meets at St. Mary's in Green Bay. The next meeting is Dec 9th, (this coming Thursday). They meet on the even numbered months. I'm going and this will be my first meeting. They are having a potluck at 7pm so I asked if I could come a little later as I don't really want to eat at the potluck with all my food allergies and the lady said that's fine.. It's $10 a year to be a member not sure if you have to pay that the first night or if you can try it out once and see. Anyway, there is another larger group in Appleton called FVC Fox Valley Celiacs - they meet on the odd numbered months in Appleton at the Technical college.

I'll be there Thursday if you'd like to join me!! :)

0

Share this post


Link to post
Share on other sites

Hi all,

I live in Green Bay too and was diagnosed about 6 months ago. I did make it to one of the support group meetings at St. Mary's and it was extremely unhelpful. I think that the group is now defunct. I would love to meet up for an informal "support" group from time to time. There is now a gluten-free restaurant open in Ledgeview called Caffe Naturally which would be a great place.

Let me know if you're interested!

Jess

Cafe Naturally has a dedicated gluten free kitchen. They are open from 8:00am-3:00pm only so if we get together it would have to be on a Saturday for me because I work during the week. If you all want to get together let me know. I'm thinking the St Mary's gig might be a 'whine bag' show or so I've heard. I'll go once and see this week.. (Thursday 12/9) :P

0

Share this post


Link to post
Share on other sites

Hi Judy,

Please report back on your experience at the meeting on 12/9. I went once (8/10) and it was a strange experience. The people seemed very disgruntled overall. The vice president came in with a big Subway bag and ate a 6 inch sub and Cool Ranch Doritoes in front of all of us (I later found out she does not have celiac disease). There was not a speaker, but a woman from Wildfire foods who tried to get us to buy products (but a lot of the ones she had on display were not gluten free). I hope you have a better experience than I did. I have heard that the support group in Appleton is a ton better but have been unable to make it to any of their meetings due to work conflicts.

I think it would be great to meet up time to time so that we can all navigate the community better and get tips on stores, restaurants, nutritionists, etc. Most Saturdays work for me, I work one Saturday a month.

Jess

0

Share this post


Link to post
Share on other sites

Hi Judy,

Please report back on your experience at the meeting on 12/9. I went once (8/10) and it was a strange experience. The people seemed very disgruntled overall. The vice president came in with a big Subway bag and ate a 6 inch sub and Cool Ranch Doritoes in front of all of us (I later found out she does not have celiac disease). There was not a speaker, but a woman from Wildfire foods who tried to get us to buy products (but a lot of the ones she had on display were not gluten free). I hope you have a better experience than I did. I have heard that the support group in Appleton is a ton better but have been unable to make it to any of their meetings due to work conflicts.

I think it would be great to meet up time to time so that we can all navigate the community better and get tips on stores, restaurants, nutritionists, etc. Most Saturdays work for me, I work one Saturday a month.

Jess

I have heard some pretty strange things about this Green Bay group at St. Mary's but eating subway at the meeting now that takes the cake. If something like that happens Thursday I'll be out of there before the first crumb hits the table. How can someone be the vice president of a club if they aren't Celiac? Probably her hubby is or something so she feels entitled. Anyway, I'm going to go once. I got a call from a friend of a friend as he has Celiac too and he wasn't too 'up' on the Green Bay group at all. That's where I heard it was a whine session. We'll see I'll give anything one chance!!! I'll let you know. :D

0

Share this post


Link to post
Share on other sites

Hi

My name is Kathy and I live in Green Bay. I was diagnosed a year ago, and my recent trip to my doctor was a disaster. He knows nothing about celiac! Looking for a GP that is celiac freindly any recommendations would be appreciated.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,132
    • Total Posts
      919,528
  • Topics

  • Posts

    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,168
    • Most Online
      1,763

    Newest Member
    Natalie1980!
    Joined