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Green Bay WI Where is the Celiac Education and Support?

Senior 70 Green Bay WI

By Senior 70 Green Bay WI
in Meet Up Room

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Senior 70 Green Bay WI Newbie
Senior 70 Green Bay WI
Posted

I am 71. And received the news that I have celiac disease. I searched on line and found a discussion from 2010 about folks who are in the Green Bay Area and were not having any success on local help. So I am hoping things have changed over the years and hopefully someone knows where to find support. Thank you.

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trents Grand Master
trents
Posted
4 minutes ago, Senior 70 Green Bay WI said:

I am 71. And received the news that I have celiac disease. I searched on line and found a discussion from 2010 about folks who are in the Green Bay Area and were not having any success on local help. So I am hoping things have changed over the years and hopefully someone knows where to find support. Thank you.

Welcome to the forum, Senior 70 Green Bay WI! I am also 71 and was diagnosed over 20 years ago.

In my experience, local celiac support groups come and go. So, if the info you have found on a local one where you live is 10 years old I would not have a lot of faith that it still is operative. The one I was involved with in Olympia, WA was about 30 minutes from my home and my wife and I went a few times and quit. It was mostly about women sharing gluten free recipes as opposed to information about the disease itself.

IMO, your best source of information whether it be about celaic disease itself or gluten-free recipes is right here on this forum. What I am saying is that I believe this forum is your best option for support.

What do you feel is your biggest need at this point? Perhaps this will help you get off to a good start with learning to eat gluten free, which is the first and biggest challenge:

 

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Senior 70 Green Bay WI Newbie
Senior 70 Green Bay WI
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Thanks for the info. My few friends and relatives say to ignore it because of my age. So I'm on my own. I'm glad to hear this is a good source to rely on. I was a bit overwhelmed when I was told to go online for information. So I'm learning ...

trents Grand Master
trents
Posted
41 minutes ago, Senior 70 Green Bay WI said:

Thanks for the info. My few friends and relatives say to ignore it because of my age. So I'm on my own. I'm glad to hear this is a good source to rely on. I was a bit overwhelmed when I was told to go online for information. So I'm learning ...

Your friends and relatives have given you a bum steer. What led to your celiac diagnosis? What symptoms were you having?

Yes, it is all very overwhelming at first. It demands that you scrutinize everything you eat and become an inveterate label reader. It also has social implications and not everyone in your circle of friends and family will accept this as a valid medical problem that you must give attention to. Some will be dismissive. But after awhile it becomes the new norm and you will develop an inventory of things that are safe to eat as well as a sixth sense of what you should probably avoid.

Are you sharing a home with others who are not celiacs?

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      Waiting on biopsy results but wanted opinion on bloodwork

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      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
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      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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