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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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MelindaLee

Green Bay Wi

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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?

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

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

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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:

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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

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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:

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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

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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!)

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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.

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

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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

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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

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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. ;)

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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!! :)

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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

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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

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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

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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.

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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.    
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