Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Kentucky


swittenauer

Recommended Posts

swittenauer Enthusiast

Just curious if anyone is from Kentucky or southern Indiana.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



LisaR Newbie

I'm from Murray, KY. LBL land.

kvogt Rookie

We have a support group in Louisville. See www.glutenfreelouisville.org if you are interested. We're happy to help. We have folks come from as far as Lexington, Elizabethtown and others. The rest of KY seems to be wanting for support groups, unfortunately.

  • 2 weeks later...
swittenauer Enthusiast

Thanks for the info kvogt! I'm just surprised I haven't run across any more people on here from KY.

ILOVEOMC Enthusiast
:D The southern part of Dayton, Ohio. We go to Cincinnati a lot to visit my husband's family.
  • 4 months later...
falwell57 Newbie

Just curious if anyone is from Kentucky or southern Indiana.

quote]

I am forming a celiac/gluten sensitivity support group in Lexington, starting in March. We will meet the 4th Thursday of the month at Good Foods Market/Cafe on Southland Drive, from 7-9. I hope even with the few I know of now, we can grow and help a lot of people in the Lexington/Georgetown area and the surrounding areas. We sure need one. Please contact me if you need help. Jan Falwell in Georgetown

tiredofdoctors Enthusiast

YES!!!!!!!! I have been trying to find the support group for Louisville, KY -- I'm about to jump up and down -- except the little poodle on my lap is ALREADY mad at me for being on the computer :lol:

I had e-mailed two of the people listed a couple of times, but didn't receive a response, so just figured that the support group had fizzled out. This is really good to know. Will be looking up the website today . . . .


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 2 months later...
HayCobb Newbie

I am in Southeast Kentucky and have bought some products at Good Foods Market when I have been in Lexington. I wish that we could have some better choices on products here, but it a rural area. My daughter is 5 years old and has been diagnosed for about 2 years now. I have also found a good little store in Berea to get the chocolate chip cookies she loves. If anyone knows of a support group in SE KY, I would love to know about it.

  • 2 months later...
lucycampbell55 Rookie

I noticed there hasn't been any posts here for a while. Is anyone from KY still here? I live in the mountains of Southeastern ky and as far as I know I'm the only celiac.

I've been a member for a long time, just haven't posted in a long time.

Hope someone is still posting from KY.

Lucy

swittenauer Enthusiast

Hi! I'm still posting. We are in Oldham County, Kentucky.

lucycampbell55 Rookie

Hi

Not exactly sure where that is. I'm from Letcher County. Near the KY/VA border. About 30 miles souteast of Hazard.

swittenauer Enthusiast

We are just north of Louisville, Kentucky.

falwell57 Newbie

Yes, our Support is up and going in Lexington. We are the GFLA - CDF (Gluten Free in the Lexington Area - a Celiac Disease Foundation Connections group. We meet monthly at Good Foods in Lexington on 3rd Thursday evenings at 7 pm. (July 27) We also have a great meeting scheduled for the 20th with Dr. Razvan Arsenescue of UK Digestive Center who will be speaking at Young Library Auditorium this coming Thursday, July 20 at 6:30 pm. Please email us at gfla-cdf@hotmail.com for more information. Our group is growing by leaps and bounds and we are here to help everyone in the area. Jan and Judy/Lexington

tiredofdoctors Enthusiast

I'm from Louisville, KY. Had to laugh . . . I e-mailed the support group here in February, and finally got a response in June . . . . don't know if I'm interested in going or not.

lucycampbell55 Rookie

:D I guess their real busy. I think I might be a little bit to far away to attend the meetings. I'm 150 miles from Lexington and even further from Louisville. ;-)

I doubt if I could go if I was close enough. I don't go out much. I have a problem being around people. I pretty much stay at home except for church and grocery shopping when I can't get hubby to do it. Anyone else have this problem? It's gotten worse over the years.

Lucy

swittenauer Enthusiast

That must be tough. When did this begin?

lucycampbell55 Rookie

About 10 years ago. I got to the point that I would start having a panic attack if I was out. I had to quit my job and haven't been able to work since. I've been on Paxil for the last 18 months and have been able to go out more but I still have panic attacks for no reason once in a while. No where near as bad as before.

swittenauer Enthusiast

Do you have a supportive family? I hope so! That must be a terrible thing to go through on top of celiac. Hopefully we can swap info & learn something from each other.

  • 2 months later...
spunky Contributor

Hi Y'all!

I'm in Northern Ky right now. We used to live in SE KY, down along the KY/TN border, back several years ago. I saw the mention of panic attacks, plus SE kY. Back in my 20's down in the mountains down there I began to have panic attacks so bad I couldn't hold down a job. I eventually found a psychologist at the local Comp Care (do they still have those????) who treated me for a year with a method called "flooding". He would go to places with me and we'd just hang around somewhere until the panic attack hit me hard, and then he would force me to stay there until it subsided a little bit. After about a year of that, I got to the point where I could manage the attacks myself, I would tell myself in a public place (or my husband would help tell me) that the panic wouldn't kill me and would subside. After many years, it finally completely left me. Now we live close to Cincinnati and attend big crowded baseball games, etc. I have hints of feeling a little uncomfortable at first, but it subsides and then I am very comfortable to be there.

These days I've discovered on my own that i have a pretty bad gluten problem...had ongoing intestinal issues for several years which became intolerable by a year ago. I've been gluten free for 8 monhts now, and the intestinal issues are clearing up pretty much. However, in my readings about gluten I did see panic attacks mentioned more than once, and am now wondering if this could have been some early warning sign in me that gluten was doing some damage????

Regardless, the biggest lesson I learned during that year of "flooding" was that if you leave the situation during the panic attack, you reinforce the panic reaction. And if you stay and let it wear off before you leave the situation, you eventually weaken that reaction. At least that's how it worked in me, and that's what the psychologist was hoping for.

Mellie Newbie

Hello fellow Kentuckians!!! :) I'm from Louisville too! I haven't been diagnosed yet with the gluten intolerance but the Dr's said to try the gluten-free diet for about a week and I'm getting ready to do that...just so overwhelming!!! Anyway I had just heard about the group here in louisville and hope to attend a meeting next time. I'll have to look it up and put it on my calendar! ;)

btw my name is Mel and I'm 28. :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.