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Louisiana Emotional Healing Support Group


kennedymoore

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kennedymoore Rookie

Tonight was a big night in Louisiana for celiacs. Oh, yes it was.

Tonight is a big night in Baton Rouge, Louisiana. The state's first emotional healing support group for those living with celiac disease met tonight in Baton Rouge.

This emotional healing celiac group was facilitated by Johnny Patout, LCSW. Spouses and family members came to support their loved one as they opened up about the years of emotional pain, frustration and losses related to celiac disease. There were hugs, tears and just a general feeling of understanding.

For me it was like nothing I have every experience. The release that came from finally getting say how I truly feel was long overdue. Just hearing from others who have suffered like me soothed me. Before I was diagnosed with celiac disease I knew no one who had suffered from 20+ aliments. I thought I was the only one. Tonight I met people who have been bedridden, lonely, confused, near death, scared, angry, sad, depressed, and lost the lifestyle they cherished, along with friends and family. But we had more in common than just our suffering - we are all survivors!

The emotional healing support group for celiacs will me every Wednesday at the James Town Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.

The support group is free and open to everyone managing celiac disease.


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YoloGx Rookie

Tonight was a big night in Louisiana for celiacs. Oh, yes it was.

Tonight is a big night in Baton Rouge, Louisiana. The state's first emotional healing support group for those living with celiac disease met tonight in Baton Rouge.

This emotional healing celiac group was facilitated by Johnny Patout, LCSW. Spouses and family members came to support their loved one as they opened up about the years of emotional pain, frustration and losses related to celiac disease. There were hugs, tears and just a general feeling of understanding.

For me it was like nothing I have every experience. The release that came from finally getting say how I truly feel was long overdue. Just hearing from others who have suffered like me soothed me. Before I was diagnosed with celiac disease I knew no one who had suffered from 20+ aliments. I thought I was the only one. Tonight I met people who have been bedridden, lonely, confused, near death, scared, angry, sad, depressed, and lost the lifestyle they cherished, along with friends and family. But we had more in common than just our suffering - we are all survivors!

The emotional healing support group for celiacs will me every Wednesday at the James Town Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.

The support group is free and open to everyone managing celiac disease.

How inspiring! Thank you for sharing. When the dust settles on several of my projects, I want to start something like that here in the San Jose, CA area. We have a lot to share, more than just recipes.

Bea

thleensd Enthusiast

That is wonderful! I'd love to see a meeting like that here... not just "this is a good recipe for rice bread". It is hard for many people to understand the emotional difficulties many of us face/have faced.

How many people were there at the meeting?

kennedymoore Rookie

8 people were there.

I was reading my post today and must apologize for all those typos. I was just so excited. I think there should be international celiac emotional healing support groups accessible to us all. I will keep posting our results.

We have to be the change that we want to see - I truly believe that. Those of us living with celiac disease have to support each other. AA started with one alcoholic needing another alcoholic to talk to and that is how we started in Baton Rouge. Baton Rouge is just the beginning, folks. I am going to keep updating you guys as we progress. We don't have a model on how to do this just right, but for right now we are meeting, talking to each other and that feels mighty good!

Thanks for your comments and support. When I was first diagnosed I spent days reading post right here on celiac.com - that was my support group. I was not looking for a recipe. Eating actually was not my first thought. I knew that meat, vegetables and fruit were gluten free so I was not going to starve. What I wanted was to meet someone like me. I so desperately wanted to hear someone say "that was me too". I began to improve so rapidly I was starting to wonder if it was all in my head. I could not grasp that the migraines that I had DAILY for 12 years were GONE in a matter of days. That the 20 plus medications that I took daily for years were never necessary and some contained gluten!

I really envision a day when celiac emotional healing support groups are held in various places and times in the same city. How nice would it be to get the diagnosis and be able to attend an emotional healing support group the next day, the same night or day? Oh, and what about if you travel to a new city and can look online to find a support group there, like we look up restaurants.

What I like is the consistency about the focus of the support group. The goal is emotional healing and support - period! There is no program, no agenda, there are no speakers, no food samples, no businesses pushing their products and __________ you fill in the blank. It is a solid hour of celiacs emotionally supporting celiacs. It is truly an hour of power! That sounds like a recipe for healing to me. To you?

kennedymoore Rookie

Guys, I could not help it. I had to re-post this with corrections.

Tonight was a big night in Louisiana for celiacs. Oh, yes it was.

The state's first emotional healing support group for those living with celiac disease met tonight in Baton Rouge.

This emotional healing celiac group was facilitated by Johnny Patout, LCSW. Spouses and family members came to support their loved one as they opened up about the years of emotional pain, frustration and losses related to celiac disease. There were hugs, tears and just a general feeling of understanding.

For me it was like nothing I have every experienced. The release that came from finally getting to say how I truly feel was long overdue. Just hearing from others who have suffered like me soothed me. Before I was diagnosed with celiac disease I knew no one who had suffered from 20+ aliments. I thought I was the only one. Tonight I met people who have been bedridden, lonely, confused, near death, scared, angry, sad, depressed, and lost the lifestyle they cherished, along with friends and family. But we had more in common than just our suffering - we are all survivors!

The emotional healing support group for celiacs will meet every Wednesday at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.

The support group is free and open to everyone managing celiac disease. We meet from 6pm-7pm.

YoloGx Rookie

Again I say yes, Kennedy, it makes a lot of sense. The idea of celiac emotional support groups across the nation is fantastic. It would make the concept of travelling for one, far less daunting--or moving to a new city. Ravenwoodglass mourns her dog even more since he was the only support she had, her family just does not get it. Thankfully she has this online group, celiac.com. It helps, but real living in the flesh people that she could reach out to could help even more. So many of us face this--not only all the health problems we have had to overcome and lost opportunities, but also lack of understanding by bosses and workmates, family and many times too by friends who just seem not to be able to understand the problems we have. I stayed with a very good friend last year on vacation, and it really strained the relationship due to my seemingly neurotic requirements around food etc. Fortunately I have a boyfriend who also has celiac, so we have each other. But even so, the challenges we have had to face in the past and now social challenges due to the cross contamination of gluten issue continue--all of which have their deep emotional side too.

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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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