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. - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

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

      Fiber Supplement

    3. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,342
    • Most Online (within 30 mins)
      7,748

    Mariebelle
    Newest Member
    Mariebelle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
    • Wheatwacked
      My TMJ ended when I lost a middle lower molar.  I had an amalgam filling from youth (1960s) that failed and the tooth broke.  I had what was left pulled and did not bother to replace it.  My bite shifted and the TMJ went away.  I just had to be careful eating M&M Peanuts because they would get stuck in the hole.
    • trents
      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point to other health issues, some of them potentially serious, or it can mean nothing. But it doesn't look like you have celiac disease.
×
×
  • 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.