Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

5 Years Gluten Free- Encouragement For The Newbies

sandsurfgirl

Recommended Posts

sandsurfgirl Collaborator
sandsurfgirl
Posted

I used to post here all the time. I don't have time anymore, so I come on once in a great while. I just wanted to share where I am at 5 years into being gluten free as encouragement for the newbies.

 

I was diagnosed at the age of 40. Extremely ill at diagnosis. It took me a full 6 months gluten free to have one symptom free day. I had horrible withdrawals from gluten. I highly suggest that newbies use the search function on here and read all the old threads about withdrawals and the healing period so you know it is normal.

 

I was so overwhelmed when I found out I had celiac that on my first shopping trip after diagnosis, I had a massive panic attack. I left an entire cart full of groceries in the line at Sprouts, ran to my car hyperventiliating, barely made it home because I felt like I was going to pass out and cried hysterically on my couch for over an hour. 

 

But I got used to it. My little boy was diagnosed after me so our whole house went gluten free. I got a gluten-free bread maker and learned to make my own bread. I found plenty of safe restaurants in our area we can eat at.

I learned to bake cookies and cakes that will knock your socks off. As a matter of fact we went to a campout with some other families. One guy made peach cobbler in his dutch oven, so I made us a gluten-free version in my dutch oven so we wouldn't be left out. A couple of friends tried mine and secretly told me my gluten free on was way better, no comparison.

 

My son used to have a hard time feeling left out with snacks and things. I always bring him matching alternatives to what is being served at gatherings and parties. But eventually he came to realize he is healthier because of it and he is happy being gluten free.

 

I was intolerant to soy, dairy and night shades at first. Now I eat dairy all the time with zero issues and love my night shades. Soy still gives me a stomach ache so I avoid that one, but it's livable. 

 

Parties and pot lucks are a bit more difficult for me but they are no longer stressful. My friends have actually started making gluten free stuff for me at get togethers without me even asking.

 

I came here to write up a review of a great restaurant that is nearly all gluten free, and then I thought I would like to share with others. I know when I was new to celiac I was a total wreck. I was so sick, so miserable and I felt like I would never get better, that my suffering would never end. I'm Italian and I cried my eyes out over pasta and raviolis. Then I learned how to make gluten free pasta taste amazing. Whatever you are going through now WILL get better. Some of us still have other intolerances like me with soy, but you deal with it and you learn to make things less about food. I am okay going to a party and letting it be about the friends and not about the food. 

 

So hang in there newbies! If you feel sick and horrible, pamper yourself. Spend lots of time in bed. REST. SLEEP. Eat clean until your body feels better. Eating clean and going off almost all grains is a gift you can give yourself now. 

 

I just ate the most scrumptious homemade gluten free cherry cupcakes with creamy homemade gluten free ice cream. And my tummy is stuffed but it is not sick.

 

Blessings to all of you! 

Sandsurfgirl

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

Thank you so much for posting this.  Wonderful encouragement for the newly diagnosed people, I will definitely direct them here if they start questioning whether or not a gluten-free diet is worth it.   ^_^

Link to comment
Share on other sites
across Contributor
across
Posted

Thank you so much for posting this! I am doing so much better since going off gluten about 7 months ago, but sometimes it still feels like one step forward, two steps back. I have been able to add some things back into my diet that I was sensitive to, but not all yet. I'm still hoping dairy can make a comeback! 

 

Every once in awhile, I get glimpses of what it feels like to be normal (at least I think that's what it feels like -- maybe it gets even better than this!) It is so AMAZING, but it's also discouraging at times because it is hit and miss. I hope there will come a day soon when normal is my default setting. 

 

Thank you for sharing this and letting us know that it does get better with time.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
Posted

Thank you so much for posting this! I'm really struggling this morning after having D for the past 3 days and not sure why. Like the previous poster said it sure feels like 1 step forward 2 steps back a lot. But this type of encouragement really brightened up my day...Thank you!

Link to comment
Share on other sites
BlessedMommy Rising Star
BlessedMommy
Posted

I'm glad that you're feeling well on the gluten-free diet! :)

 

Could you share your recipe and instructions on how to make a peach cobbler in a dutch oven? That sounds SO good!

Link to comment
Share on other sites
notme Experienced
notme
Posted

hello, sandsurfgirl!  :)  

 

folks, this is one of the kind souls who held my (virtual) hand when i was first dx'd - she wasn't all 'pardon me but i have a suggestion' lolz  she was like:  you got this!  kick it in the butt!  also, she understood the Importance of Pasta LOLZ  :D  anyways, she (and others) inspired me to give back.

 

thank you very much!  thank you for posting and i'm glad you are doing well (pshaw - i knew you would!)  :) 

Link to comment
Share on other sites
Gemini Experienced
Gemini
Posted

Congratulations on making lemonade out of lemons!  This is what kicking butt and not whining about eating gluten free looks like.  I was exactly the same way, only not as upset when diagnosed because I knew how to cook, so like you, I learned how to make great versions of all my favorite foods.  I was just happy to learn my illness was caused by an actual disease and was not a mental illness, as so many docs insinuated.  The only thing that would make it better is faster healing times but it takes what it takes.

 

You did a good job, sandsurfgirl!  Pat yourself on the back!  :)

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


srall Contributor
srall
Posted

It's good to hear you are doing well.  I used to post more 4 years ago when I went gluten free and I always loved your spunk and spirit.  The gluten-free lifestyle does get easier.  I have had to go deeper with my healing as I was diagnosed with another auto-immune disease this past March (Sjogren's) but I love that I've been able to manage both diseases with diet (for the most part…Sjogren's is proving to be a bit stickier).  Learning to love real and nutrient dense food took time, but it is so worth it.   Our bodies are amazing and can heal themselves with proper TLC.  I think it's a "great" time to be gluten free.  There is so much more awareness that even 4 years ago when my family went gluten free.   Feeling better is worth every step of this arduous journey.

Link to comment
Share on other sites
DownWithGluten Explorer
DownWithGluten
Posted

ah I remember you too. I don't post on here as much either.  Nice of you to give encouragement to the newbs.

 

It's been 7.5 years for me now.  Within that time, I've only been "glutened" three times....and each of those times reminds me exactly what all this extra work and frustration is worth. I air on the strict side, and for me, 7.5 years of having to deal with other people's reactions, lack of understanding, eye rolling, confusion, lack of cooperation, backtalk... from friends, family, coworkers, waiters...well, it has taken a toll on me but....it is still worth it in the end for your health. You just have to stand up for yourself, and your own health, even though people will judge you for it and not understand.  Definitely, 100%, body-wise I am better. For me it was an overnight change the moment I eliminated gluten. From daily pain, full blown 'gluten attacks' every 3-6 weeks, or more...and increasing...occurring with the slightest triggers like getting up early, stress. I still don't know how I would have kept a full time job if I hadn't gone gluten free.  So frm that...to just evaporating overnight. No more daily pain, random sickness attacks...it was really depressing me before to be at the mercy of the illness. So, now, I control it.  That's what the diet does for me.

 

Another plus is there are a LOT more options out there now...and awareness...than even when I started 7 years ago. A lot more products labeled as gluten free, more gluten free food even in non specialty stores...etc.  So, that's a plus :)  Not that I'm saying "oh it's so easy to be gluten free now"...just that, I've seen awareness build over the years and it gives me hope it will get better over time, too.

Link to comment
Share on other sites
GottaSki Mentor
GottaSki
Posted

Hey...I remember you too!

Thank you...awesome when folks pop back in to encourage the newly diagnosed and those looking for answers to why they aren't improving quickly!

Great to hear you are doing well :)

Link to comment
Share on other sites
Kateteich Newbie
Kateteich
Posted

I've been gluten free for 9 days.  It seems over whelming, glad to read such an encouraging post. 

Link to comment
Share on other sites
GottaSki Mentor
GottaSki
Posted

I've been gluten free for 9 days.  It seems over whelming, glad to read such an encouraging post.

Welcome Kate!

It is overwhelming at first, but after some time it will become easier and eventually simple. I was in tears regularly at the grocery store in my early days....and I'm not the only one.

Keep it as simple as possible, stick with mostly whole foods ... Shop the perimeter of the grocery store where they keep the fresh foods...keeping the processed gluten-free items as treats.

If you haven't read this yet...give it a good read, perhaps twice...loads of fast forward info in it:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Hang in there :)

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

I remember you too, of course !! and I was thrilled to see you post in your no-nonsense, totally encouraging way on another thread the other day.

 

It's always good to read successful healing stories, even for us "veterans".!! ^_^  

 

So happy to "see you" , sandsurfgirl....and that all's well with you and your family.

 

Now, hand over some ice cream and a cupcake please!!

 

Cheers, IH

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

I've been gluten free for 9 days.  It seems over whelming, glad to read such an encouraging post. 

 

 

Newbie in da house! Newbie in da house!! :D Give her a cupcake too. 

 

Welcome Kate...big hugs and do not worry...you are on the road to wellness.

 

Just remember: "Every day is a healing day". Hang in there We're here for you.

Link to comment
Share on other sites
Mwhaley Newbie
Mwhaley
Posted

I just found out yesterday that I have celiac disease so today is my first official day as gluten free and all I want is a donut lol. So far everyone's comments have been really helpful and encouraging. I had no idea that I need to get gluten free makeup, shampoo, conditioner, etc. It looks like I have a lot of research to do.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

I just found out yesterday that I have celiac disease so today is my first official day as gluten free and all I want is a donut lol. So far everyone's comments have been really helpful and encouraging. I had no idea that I need to get gluten free makeup, shampoo, conditioner, etc. It looks like I have a lot of research to do.

 

Without taking this thread too far off course, I want to say this: You do not need to get gluten free makeup, shampoo and conditioner unless you have a wheat allergy on top of celiac.

 

The only thing you need to scrutinize is lip stick and possibly any facial creams that may end up in your mouth that you will swallow.

I have never seen a toothpaste with gluten in it, BTW

 

Read this please

 

Open Original Shared Link

 

get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler 

 

and welcome to the celiac family!! You're going to be okay. ;)

Link to comment
Share on other sites
GottaSki Mentor
GottaSki
Posted

I just found out yesterday that I have celiac disease so today is my first official day as gluten free and all I want is a donut lol. So far everyone's comments have been really helpful and encouraging. I had no idea that I need to get gluten free makeup, shampoo, conditioner, etc. It looks like I have a lot of research to do.

Welcome to you too MW!

Guess what....you can have a donut...just has to be a gluten-free one.

It takes some time to adjust and learn what gluten-free products taste good or how to make things yourself...I make chocolate donuts with butterscotch glaze with donut baking pans that another member told me about...we all share the good products and recipes around here.

Take a look around and ask questions...we all had that first day gluten-free too ;)

Link to comment
Share on other sites
LauraTX Rising Star
LauraTX
Posted

Welcome to our new friends!  If you want, go ahead and make an new post to introduce yourself and how you got diagnosed and stuff, in the Coping With section.  

Link to comment
Share on other sites
ezgoindude Explorer
ezgoindude
Posted

As weird as this sounds i am blessed when you guys talk about the "dark times" of your pre diagnosis/diagnosis/recovery times,  it helps put my mind at ease that I'm not crazy when its more than just IBS....

 

I'll be posting on the coping with as a newbie, as of two days ago I got what for a better term is a conclusion to what I've been trying to heal with the foods I eat, and 3 months into all this I still have relentless symptoms that make you feel like its all for nothing sometimes.

 

Sorry on the rant, I tend to complain easily,

anyways especially thank you sandsurfgirl and downwithgluten for putting a brighter perspective into all this.

Link to comment
Share on other sites
  • 2 weeks later...
Brian Jackson Newbie
Brian Jackson
Posted

Thanks for posting that! I was diagnosed with celiac early July 2014... have been gluten-free for a little over 3 weeks. I guess I am very impatient lol :) I have had ups and downs. Some of us need reminders that our bodies do take time to heal and it doesn't happen overnight.

Link to comment
Share on other sites
sandsurfgirl Collaborator
sandsurfgirl
  • Author
Posted

I'm glad that you're feeling well on the gluten-free diet! :)

 

Could you share your recipe and instructions on how to make a peach cobbler in a dutch oven? That sounds SO good!

Super simple! Dump 2 cans of canned peaches with juice in the bottom of a greased dutch oven. Then dump your favorite gluten free vanilla or yellow cake mix over it to cover the peaches. I use Gluten Free Pantry. Then cut up one stick of butter into thin slices and arrange them over the cake mix. Bake at 350 covered for about 20 minutes and then start checking it. It can take a long time so keep going in 10 minute intervals.  The butter will all soak in and the top will start to crisp. 

Link to comment
Share on other sites
sandsurfgirl Collaborator
sandsurfgirl
  • Author
Posted

hello, sandsurfgirl!   :)

 

folks, this is one of the kind souls who held my (virtual) hand when i was first dx'd - she wasn't all 'pardon me but i have a suggestion' lolz  she was like:  you got this!  kick it in the butt!  also, she understood the Importance of Pasta LOLZ   :D  anyways, she (and others) inspired me to give back.

 

thank you very much!  thank you for posting and i'm glad you are doing well (pshaw - i knew you would!)   :)

 

I remember those days Not me! I'm so glad to see some familiar faces around here. I'm sorry for being MIA. 

Link to comment
Share on other sites
sandsurfgirl Collaborator
sandsurfgirl
  • Author
Posted

I remember you too, of course !! and I was thrilled to see you post in your no-nonsense, totally encouraging way on another thread the other day.

 

It's always good to read successful healing stories, even for us "veterans".!! ^_^  

 

So happy to "see you" , sandsurfgirl....and that all's well with you and your family.

 

Now, hand over some ice cream and a cupcake please!!

 

Cheers, IH

 

Irish Heart! Good to see you! Here's your cupcake and ice cream... you choose the flavor. LOL

Link to comment
Share on other sites
sandsurfgirl Collaborator
sandsurfgirl
  • Author
Posted

I just found out yesterday that I have celiac disease so today is my first official day as gluten free and all I want is a donut lol. So far everyone's comments have been really helpful and encouraging. I had no idea that I need to get gluten free makeup, shampoo, conditioner, etc. It looks like I have a lot of research to do.

 

Kinnikckinnick and Katz make great donuts! But don't go there just yet. Let your gut heal. You can have your gluten free donuts in a few weeks or so. 

Link to comment
Share on other sites
BlessedMommy Rising Star
BlessedMommy
Posted

^Homemade baked gluten free doughnuts are super easy as well! :)

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,061
    • Most Online (within 30 mins)
      7,748
    Stephanie Thompson
    Newest Member
    Stephanie Thompson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Zackery Brian
      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

      By Zackery Brian · Posted

      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      Still testing positive after being gluten free for one year ?!!

      By knitty kitty · Posted

      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
×
×
  • Create New...