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.

  • 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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.