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


Kristen Bennett

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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


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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


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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 :) 

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
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    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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