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

Louisiana Emotional Healing Support Group

kennedymoore

Recommended Posts

kennedymoore Rookie
kennedymoore
Posted

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.

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

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

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
thleensd
Posted

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
kennedymoore
Posted
  • Author

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
kennedymoore
Posted
  • Author

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
YoloGx
Posted

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.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748
    Lesley-Anne
    Newest Member
    Lesley-Anne
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.