17 replies to this topic

[MelindaLee]

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?

[Judy3]

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

[Cypressmyst]

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

[Judy3]

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

[Cypressmyst]

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!

[Judy3]

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..

[Cypressmyst]

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.


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.

[Judy3]

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.


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.

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!!! (picturing myself as a super woman with a DQ2 embroidered on my chest and carrying a DQBlizzard!! no cookie dough in it though!)

[Cutter]

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.

[Cypressmyst]

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

[Judy3]

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

[jebby]

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

[Cypressmyst]

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.

Also wanted to let folks know about this FB group:
East Central Wisconsin Gluten Free Group

Worth liking if you are an FB user.

[Judy3]

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!!

[Judy3]

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)