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

How Does It Feel To Be Cured Of Celiacs, When You Finally Get Your Life Back?


rcheltrvel

Recommended Posts

rcheltrvel Newbie

Just curious of how it feels to get your life back after being sick and undiagonosed with Celiacs, long term? How does it feel to get healthy again?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

It feels great to feel "normal", of course.

 

I just want to address the title  as I don't want you to have any misconceptions.  Celiac is not "cured".  You have it for the rest of your life. You must eat gluten-free for the rest of your life.  You may feel "cured" but you can never stop treating your "illness". Unlike other chronic illnesses,  the treatment isn't dangerous.  The illness doesn't progress on the gluten-free diet.   :D

IrishHeart Veteran

I have to echo Karen's thoughts about the word "cure".

There are really no "complete cures" for autoimmune diseases, but there are treatments that put symptoms into

remission. We're lucky that it's the gluten free diet and not a medication or treatment that has horrible side effects

and we have an excellent chance of recovery provided we remain G F and address any deficiences, etc.

 

For me, it took a long time to feel good. But honestly, I was very ill at diagnosis,

so even though I have joint and connective tissue issues

as a result of going undiagnosed for so long, I am so much better

than I was,my brain works again,  I can do more (physically) than I could for a long time 

and I sleep through the night for the first time in my life. And I do not live in the bathroom anymore. (yaay!)

 

So, in a way, it feels like a whole new life. :)  whoohoo!

cahill Collaborator

as kareng and irishheart have already said no cure but  a forever treatment. I am good with that :)

I dont know if any one that knows me would call me normal in any way :P:lol: :lol:  but knowing that my hard work in adhering to a gluten free diet has  returned my gut to  "normal" ( well as normal as I will ever get :lol: :lol: ) is priceless :D

 

I ( as Irish) was undiagnosed for a very very long time, the damage from untreated long term celiacs can be tremendous ,, even life threatening ,,

The complications  of being undiagnosed,, there for untreated  ( additional intolerances ,gluten ataxia ,  additional autoimmune diseases ect ) is what I am  dealing with  long after my celiacs is under control.

nvsmom Community Regular

I don't feel cured either. I am not back to great health yet, and I honestly doubt I ever will be - too many permanent health problems were created by decades of a missed diagnosis. I may no longer have to carry an extra sweater to hide my bloat after I eat, but my thyroid still doesn't work, I still have an autoimmune blood disease, arthritis is still there (although much less), and a few other areas are still out of whack.

I feel better than I did, but far from cured.

1desperateladysaved Proficient

I feel so much better it is ridiculous.  I am carrying some damages though and still gathering inventory about it.  There wasn't a day that I said, "Oh, now I am better!"  There were many days I did feel that way.  It feels good to have a clear mind and energy.

 

D

cahill Collaborator

  There wasn't a day that I said, "Oh, now I am better!"  There were many days I did feel that way. .

 

D

yeap :)

 

it is not 'one day you feel like crap and the next day you are normal again never to be ill again'

 

it is  slow process ,after awhile you realize you are having more good days then bad, ,,,that you feel so good that a bad day can blind side you but good days come again , & again & again :wub:


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



Celiac.com Sponsor (A8-M):



rcheltrvel Newbie

Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!

GottaSki Mentor

Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!

 

Yes, removing gluten allows your small intestine to heal which allows your body to absorb all the nutrients needed to improve symptoms present throughout the body...not just the digestive system :)

 

Added bonus....many that remove gluten have marked improvement in symptoms of ALL autoimmune disorders - RA and Fibro included.

IrishHeart Veteran

....and some discover they never even had "fibro" or thyroid disease or clinical depression or

incurable insomnia, or ..., or...(fill in the blank)  .....at all....celiac is the great mimic.

 

See how your body heals and be patient. My motto:  "every day is a healing day".

GottaSki Mentor

yep, what she said :D

ravenwoodglass Mentor

It feels wonderful to not be in pain every day. I do still have a lot of damage that came about because of the long time it took for me to be diagnosed and it did take years to get to the point where I could live a semi-normal life. However it also makes me a bit sad when I think of all I missed out on with raising my children. My poor kids grew up with a mother who was slowly dieing in front of them. One of them as a teen even told me the family would understand if I committed suicide. No child should have to go through that. It also makes me sad that they never got to know the 'real' me as I wasn't diagnosed until they were almost fully grown.

Thankfully doctors are getting a bit more savvy about diagnosing us so hopefully there are fewer and fewer people living with having to watch a loved one suffer so greatly.

KCG91 Enthusiast

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;) 

NoGlutenCooties Contributor

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;)

 

That's exactly how I feel.  I was asymptomatic when I was diagnosed but since being gluten free my mood is better, I sleep better, and I can get in a really really good work out and come out feeling strong instead of beat-up.  For not knowing anything was wrong with me before the difference is pretty amazing.

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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

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

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

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

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

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.