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Kristen Bennett

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

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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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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 

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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.

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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

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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/gluten-free/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.

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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! 

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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/

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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!  ?

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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/gluten-free/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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    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
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