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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Larzipan's topic in Related Issues & Disorders
      38

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      38

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    4. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    5. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,361
    • Most Online (within 30 mins)
      7,748

    Julie Mitchell
    Newest Member
    Julie Mitchell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
×
×
  • 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.