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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,357
    • Most Online (within 30 mins)
      7,748

    Tomo
    Newest Member
    Tomo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
×
×
  • 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.