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 Long Should I Take To Recover?


MissBonnie

Recommended Posts

MissBonnie Apprentice

i was sick to the point of being hospitalized about 2 months ago. then found out i was celiac while i was in there through an endoscopy. the abdominal pain was so intense ive been out of work for 6 months now trying to figure out what was wrong, its been hell on earth. ive been gluten free for 2 months now, but still have days where i dont get out of bed because of pain. other days i feel almost 100%. is this normal because of how sick i was or is something else wrong? i do feel 100 times better but im just wondering how long until i recover fully? maybe up to a year ive read?


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



Celiac.com Sponsor (A8-M):



Mack the Knife Explorer

It's been over 16 months for me.... And my blood tests are still coming back positive for Coeliac disease, my ferritin and vitamin D levels are still very low and I still have good days and bad days with my guts.

But I am much better than I was. I am gradually improving - it's just taking a long time.

shadowicewolf Proficient

i feel your pain. I'm two weeks gluten free and it still hurts.

MissBonnie Apprentice

yeh the first 2 weeks i improved but still went down hill every few days :( hope you get better very soon!

also, 16 months wow. i dont know if i can cope with that haha. huess id have to huh. i think im in for the long recovery too though considering how i feel and the fact that i ended up in hospital on a drip for 2 days.

DonaldandAlanda Evans Apprentice

I also wound up in the hospital when I was sick. I was diagnosed a little over a year ago and it did take a while to feel better. I was totally convinced something else had to be going on. There are days where I still feel terrible, but overall I feel great.......I'm even in the process of training for my first marathon. Hang in there, it takes time.

MissBonnie Apprentice

thanks, its comments like yours that give me hope. oh what i would do to be healthy enough to train for a marathon! congrats on getting through yours i hope im there soon too :)

collgwg Contributor

i am also wondering the same thing

how long does it take for the villi to grow back?

does it even grow back?

and if it does can you eat gluten again ?

i have been off work for about 2 months and its looking like it will be longer i can not seem to get healthy

i have found out due to my body telling me that i am allgeric to soy this is nuts gurrrrr


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



Celiac.com Sponsor (A8-M):



alex*iustaspira Newbie

I found out officially in feb of this year that I have celiac disease.. except despite going gluten free and being SO careful, I feel like I haven't gotten any better, even after almost 4 months. I had heard that most people feel better immediately so I'm a little worried, but this kind of makes me feel better haha. I still don't know what to do though :(

mushroom Proficient

I found out officially in feb of this year that I have celiac disease.. except despite going gluten free and being SO careful, I feel like I haven't gotten any better, even after almost 4 months. I had heard that most people feel better immediately so I'm a little worried, but this kind of makes me feel better haha. I still don't know what to do though :(

I was one of those who did not get better immediately. Some things did, others got worse, and they ended up being the result of additional food intolerances. So unfortunately we can't assume that quitting gluten is like quitting smoking and it's just a straight line improvement. Usually we also have to quit lactose because our ability to digest that has been destroyed by the damage in the small intestine. And then soy is another big intolerance, corn to a lesser extent. Nightshade plants can be a problem for many of us. Keeping a food and symptom diary helps a lot of people keep track of their reactions to different foods. So does keeping the diet simple to start with and eating whole, unprocessed foods and avoiding the gluten substitutes which are often full of soy and of grains our bodies are not used to digesting.

MissBonnie Apprentice

no celiacs can never eat gluten again..

and yes i found out i was celiac in feb and im still struggling. im not back at work. but it can take months or even a year to get better so dont stress. ive had to accept it.

cap6 Enthusiast

I was one of those who did not get better immediately. Some things did, others got worse, and they ended up being the result of additional food intolerances. So unfortunately we can't assume that quitting gluten is like quitting smoking and it's just a straight line improvement. Usually we also have to quit lactose because our ability to digest that has been destroyed by the damage in the small intestine. And then soy is another big intolerance, corn to a lesser extent. Nightshade plants can be a problem for many of us. Keeping a food and symptom diary helps a lot of people keep track of their reactions to different foods. So does keeping the diet simple to start with and eating whole, unprocessed foods and avoiding the gluten substitutes which are often full of soy and of grains our bodies are not used to digesting.

It is reassuring to hear someone say that some things got better and others were worse. I am 14 months and there are still good days and bad days. Thankfully most are good. So there is hope that they will all be mostly good?? :D

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.