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

Is it sometimes to late to reverse damage, and how do you know?


Kristen Bennett

Recommended Posts

Kristen Bennett Rookie

I had my first questionable symptoms when I was about 7 years old, frequent bouts of vomiting for hours until I eventually passed out of exhaustion, stomach pains, chronic fatigue and joint pains, as the years past I was diagnosed with several mental disorders, my mobility was very much comprimized because I began having seizures,neuropathy, and other neurological symptoms, a lesion was found on my brain mri but spinal tap was negative for o bands for multiple sclerosis. But i feel like I was just maybe on the cusp of potentially developing MS then was diagnosed, ive been gluten free about 3 weeks, its not very long, but I did gain some energy back but I pretty much live in the restroom(tmi) i get right sided stomach pains a lot they thought I had appendicitis, the fatigue comes and goes, and constant body tremors and drunk feeling, do you think after potentially after 17 years of being un diagnosed the permanent damage is more likely, is there any way to find that out? I see my gi next friday. I have had my b12 serum tested it was fine


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



Celiac.com Sponsor (A8-M):



Kwn2sl Newbie

Can someone please share -What exactly are the "long term " affects of gluten and celiac disease ? Cancer ? Dementia what are we talking about when people say long term affects of celiac - generally feel like crap - newly diagnosed symptoms for years . Uber confused 

Ennis-TX Grand Master

It will take a month or two before you notice any major healing, the gut and energy issues you should notice major changes in 6 months and if you keep completely gluten free no cheating and rare CC issues you should notice mostly healed gut issues in 2-5 years.  Neurological symptoms are different, they are very slow to heal, 3 years in and I am just now getting the ability to calculate some math, and think about creating new things without much stoppage, mind blanking, or stuff not connecting. I still can not do math like I used to or computer programing. My nerves are still pretty fried, I can play games a bit more then I was the previously but nothing major like I could when I was much younger, the numbness and lack of hand and eye coordination are still evident. 

Hopefully you did not develop any other issues, I ended up developing UC as another autoimmune disease. -_- very limited diet. But that is another story, I wish you luck and take it you have seen the newbie 101 section, the alternative food listings, and the suggestions on supplements you might need?   

PS just cause your b12 is fine does not mean you do not need it, Many of us require a much higher dose due to various reasons and a full spectrum of B vitamins not just b12 we also are prone to various other deficiencies and many of use require many times the regular dose between absorption issues and our bodies just needing that much . Very common ones are Magnesium, B vitamins, Vitamin D Vitamin E, Iron, Folate, just to name a few.

Kristen Bennett Rookie
5 minutes ago, Ennis_TX said:

It will take a month or two before you notice any major healing, the gut and energy issues you should notice major changes in 6 months and if you keep completely gluten free no cheating and rare CC issues you should notice mostly healed gut issues in 2-5 years.  Neurological symptoms are different, they are very slow to heal, 3 years in and I am just now getting the ability to calculate some math, and think about creating new things without much stoppage, mind blanking, or stuff not connecting. I still can not do math like I used to or computer programing. My nerves are still pretty fried, I can play games a bit more then I was the previously but nothing major like I could when I was much younger, the numbness and lack of hand and eye coordination are still evident. 

Hopefully you did not develop any other issues, I ended up developing UC as another autoimmune disease. -_- very limited diet. But that is another story, I wish you luck and take it you have seen the newbie 101 section, the alternative food listings, and the suggestions on supplements you might need?   

PS just cause your b12 is fine does not mean you do not need it, Many of us require a much higher dose due to various reasons and a full spectrum of B vitamins not just b12 we also are prone to various other deficiencies and many of use require many times the regular dose between absorption issues and our bodies just needing that much . Very common ones are Magnesium, B vitamins, Vitamin D Vitamin E, Iron, Folate, just to name a few.

Thank you very much, I still currently suppliment D3 and b-12 sublingual, when I see my gastro I am going to ask him about supplimentation. Have you heard anything about the infusions to help get vitamins and nutrients into the body quicker? Ive heard of it for celiac but didnt know what the qualifications were for it

Ennis-TX Grand Master

I personally take them in a liquid form. No Pills and quickly absorbed, There are shots you can get for them, and sublingual you dissolve under your tongue.

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

Idea of what I take, Liquid Health Products are great as they are all in liquid form and you just measure them out and add them to juice or tea.  I also use magnesium in rotation between Natural Vitality Calm and Doctors Best. Both are in powdered form and dissolved into liquid. Magnesium is a huge help with nuro issues, The Calm version is a citrate and can be harsh on your stomach doctors best works pretty good and is much easier on the stomach.

Jmg Mentor
2 hours ago, Kristen Bennett said:

ive been gluten free about 3 weeks,

Hi Kristen :)

It's really early days as you know. The odds are exceedingly in your favour. Many users here have experienced complete recoveries after decades longer undiagnosed. The body has wonderful healing powers once the gluten is removed. In about 2-5% of cases the healing doesn't work so well:

Open Original Shared Link

but I think you'd need to be unresponsive for a year before that happens. So no need to worry just yet (easy for me to say I know)

All the best! 

cyclinglady Grand Master
3 hours ago, Kwn2sl said:

Can someone please share -What exactly are the "long term " affects of gluten and celiac disease ? Cancer ? Dementia what are we talking about when people say long term affects of celiac - generally feel like crap - newly diagnosed symptoms for years . Uber confused 

This might answer your question:

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Neurological issues take the longest to heal.  ☹️ Most celiacs take a year or longer to heal.  Add In neurological issues and it could take years.  So.....be patient!  So hard, I know.  Learn and master the diet.  Avoid going out as each gluten exposure causes set backs and further damage.  Read our Newbie 101 thread under "Coping" for great tips.  Just take one day at a time!  ?

Kristen Bennett Rookie
21 hours ago, Ennis_TX said:

I personally take them in a liquid form. No Pills and quickly absorbed, There are shots you can get for them, and sublingual you dissolve under your tongue.

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

Idea of what I take, Liquid Health Products are great as they are all in liquid form and you just measure them out and add them to juice or tea.  I also use magnesium in rotation between Natural Vitality Calm and Doctors Best. Both are in powdered form and dissolved into liquid. Magnesium is a huge help with nuro issues, The Calm version is a citrate and can be harsh on your stomach doctors best works pretty good and is much easier on the stomach.

Yes I take the liquid forms as well :) 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.