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

Rebuilding Your Life


jenleebee

Recommended Posts

jenleebee Newbie

Hello -

It feels a little premature to be posting this, as I have only been gluten-free for only less than a week. I am so thankful to be feeling better - gut ache diminished, rashes clearing up, feel steadier emotionally, clearer thinking and feeling like I am actually on a healing path that makes a real difference, but I also feel like I am waking up from a life-long deep sleep and am looking around at my life feeling *lost*, maybe because up until now has it been consumed/fixated on feeling horrible and then looking for answers to why I feel so bad.

I was hoping to get a dose of inspiration from hearing about other people's experiences and stories of how the health improvements/healing from being gluten-free helped you to transform other areas of your life, like work, relationships, goals, new interests, etc.

I'd also be interested in hearing any stories about how anything that was difficult or seemingly impossible (learning, social interactions, etc) got better after going gluten-free.

Thank you so much!

Jen


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



Celiac.com Sponsor (A8-M):



Yellow Rose Explorer

Hi Jen,

I have been at this since April. I don't get the whole gut reaction but do have horrible joint and muscle pain. When I was first diognosed I could not even walk to the bathroom without support. I sat in a chair all day and did nothing but watch TV. I don't do that anymore. I have pain still but it is no where near what I had. I have been able to reduce my meds and am slowly coming off of them. I can now do my job without help. I have more stamina, energy, and feel happy again. I am in the process of eleminating corn and rice from my diet as well as gluten and am feeling much better since doing that. I have a very supportive family and as far as social settings go I just bring my own food, explain that I have alergic reactions to a lot of foods and don't want anyone to go to any trouble accodmodating me. Dining in restruants I eat salads and bring my own dressing, or eat a baked potato. It's filling and works just fine for me. When people ask how I can give up wheat and/or gluten I tell them It's not a choice it's poison for me and then educate them. I also make a point to let them know I am grateful to God for giving me an answer to my health problems that can be solved so easily by just changing my diet. No surgery, dialisis, chemo, medicine, etc. it lightens up the mood and makes people look at it in a different light.

Yellow Rose

gfgypsyqueen Enthusiast

Hi Jen,

I think you are going to be a little shocked in the ways that you feel better and never knew anything was wrong. The first few months of going gluten-free my moods were stable and I felt better than I had ever felt in my life. That feeling spills over into other areas of your life. So some of the changes will be great others changes may be hard for people to accept. In the end, consider this a new beginning for you. Enjoy it.

jenleebee Newbie

Thank you Yellow Rose & gfgypsyqueen!

Both of your posts are so inspiring to me. There is much to look forward to in the healing process.

:D

mftnchn Explorer

I've been at it since April too, not dramatic change yet but slow change, enough that I think I am on the right track. Still a lot of ups and downs, but now a few great days here and there when I really feel energetic, and like I have a life back.

I second Yellow Rose, I am grateful for an answer for which the treatment is dietary and not drugs. I am still taking a ton of stuff but I hope that will get better over time as my body heals.

Guest j_mommy

Alot of us gluten-free since April!!!!

At first I was like there is noooo way I could do this!!! But know I can go to the grocery store and not feel over whelmed, I pick up a product and look at the list of ingred. and know what to look for!!! There are still ups and downs for me but I feel a ton better now!!!

Good Luck!

Guest thatchickali

I'm only a month and a half into my recovery...not completely healed yet. (I think there might be another intolerance)...

Anyway. I know exactly how you feel. It took me a couple days for it to hit me and I just had a hard time comprehending that I wasn't going to feel sick for the rest of my life.

It's good that you have a positive outlook though!

For me, every new experience (like dealing with friends, family, planning for holidays) it gets really hard. Sometimes I just need to lock myself in my room and cry, but I think that it naturally takes time to accept these things and let it become a lifestyle.

Sometimes I feel like I'm back in an infantile stage, relearning life.

It's a long road.........


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



Celiac.com Sponsor (A8-M):



jmp07v Newbie

I have been gluten-free since May, so I still very clearly remember how incredibly lost and awful I felt emotionally when my doctor told me. I had just graduated from college, all my friends were scatted to the ends of the earth, and I was living with my parents again. I remember sitting in front of the TV for a straight week, eating popcorn and trying not to cry every time I saw a commercial for a food I could no longer have. I had no support group, and I truly felt like my life was over.

But after that week, I noticed that I was really starting to feel better. I only had DH, so the rash was still there and extremely itchy (usually waking me up at night), but I wasn't so fatigued, my afternoon headaches had disappeared, and I could walk into the grocery store without thinking "poison" at everything I couldn't eat. Things do get better - I remember my parents and other family telling me this, and I thought they were nuts - they had no idea how I was feeling, they didn't have to follow my insane diet, but it turned out to be true.

Eating out still presents a challenge. Sometimes restaurants don't take me seriously when I tell them I cannot have food that has touched any bread product (so don't just pick the croutons out of my salad, and don't put my burger on a bun), but I've found that if you stress that you are allergic, they shape up. Outback (and the other restaurants under that corporation) has a gluten-free menu, and they take special care to make sure all your food is "clean".

I hope this helps - for me, the key was finding alternates, not substitutes. Like, instead of just buying the gluten-free version of Wheaties, I have yoghurt, or eggs. Good luck! B)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.