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Kentucky


swittenauer

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swittenauer Enthusiast

Just curious if anyone is from Kentucky or southern Indiana.


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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 . . . .


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  • 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. :)

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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