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

[Kristen Bennett 1]

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

[Kwn2sl 0]

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 817]

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 1]

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 817]

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 299]

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:

https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/refractory-coeliac-disease/?preview=true

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 1,663]

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:

https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/24477-2/

[cyclinglady 1,663]

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 1]

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