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How Long Did It Take?

pain*in*my*gut

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

So I had my biopsy on Friday, still waiting for the results. Regardless, I am gluten free for life because of my blood tests. So I guess I am over here on the "other side" now. :unsure:

Today is day 4, and I feel like crap, which I attribute to gluten withdrawal. I just want to eat an entire chocolate cake right now. :o

Some of my neuro symptoms that I suspect are from gluten are tingling in my toes and feet. I also have been having insane muscle twitches all over my body. Yesterday, my cheek muscle kept twitching all day...and now my left thumb is going crazy! :unsure:

For those of you with neuro symptoms, how long did it take on a gluten free diet to see improvement? Has anybody ever been completely cured of their symptoms?? At what point should I see a neurologist to make sure these symptoms aren't from something else? I had an appt. with a neuro before I got my blood test results, but I canceled it thinking we had the answer.

I would love to hear others experiences!

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lolololo Rookie
lolololo
Posted

It's been about two weeks for me and I'm still getting symptoms that you've described. I guess it takes time.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

It's been about two weeks for me and I'm still getting symptoms that you've described. I guess it takes time.

Ugghh...sorry to hear this, loX4! I guess I was hoping for something dramatic, so far the only thing that is better for me is the gas and bloating. All the other crap is still there.

I think I can....I think I can.... ;)

Kquad Apprentice
Kquad
Posted

As i said in another post, mine ( neuro) lasted 6 weeks going off gluten and faded away. The only things now, is that when I get glutened, the neuro symptoms are much worse. The GI stuff only lasts for 2 weeks. I am now 7 weeks later and still having some neuro symptoms. I am beginning to think, that I may have some permanent damage now. The neurologist and I both think I have gluten ataxia now. It evidently is progressive with repeated exposure.

On the plus side, I feel like someone has taken their foot off the accelerator in my brain for the first time in years. My wife said I am getting to be more like the person she married and I can go to the store and remember why I am there. Nearly a decade of being told I had IBS, with no real testing! May have been able to miss a lot of this and now having possible permanent damage ( mainly visual stuff, but some balance issues)

AVR1962 Collaborator
AVR1962
Posted

So I had my biopsy on Friday, still waiting for the results. Regardless, I am gluten free for life because of my blood tests. So I guess I am over here on the "other side" now. :unsure:

Today is day 4, and I feel like crap, which I attribute to gluten withdrawal. I just want to eat an entire chocolate cake right now. :o

Some of my neuro symptoms that I suspect are from gluten are tingling in my toes and feet. I also have been having insane muscle twitches all over my body. Yesterday, my cheek muscle kept twitching all day...and now my left thumb is going crazy! :unsure:

For those of you with neuro symptoms, how long did it take on a gluten free diet to see improvement? Has anybody ever been completely cured of their symptoms?? At what point should I see a neurologist to make sure these symptoms aren't from something else? I had an appt. with a neuro before I got my blood test results, but I canceled it thinking we had the answer.

I would love to hear others experiences!

I had the same problem when I first went off glutens feeling so hungry. One of the other members here actually explained what happens in the body, it is a process.

The toes could be a couple different things. Toes can tingle if your calcium levels go too low. You want to make sure you are getting enough vit D to help absorb your calcium. GOOGLE "L-carnitine tingling in toes" also. I have had all kinds of problems with tingling, pins and needle pain, and hot feet which all stopped when I started taking L-carnitine.

Muscle spasms/twitched were corrected by taking a potassium supplement, magnesium plays a roll in muscle contraction as well, all of which can be looked up.

How much vitamin D are you taking daily? As I increased my vit D the bugs crawling and hair-like feelings on my skin went away. I take 4000 IUs total in one day, split at each meal.

ravenwoodglass Mentor
ravenwoodglass
Posted

Some of my neuro problems went away pretty quickly like depression and the pins and needles sensation. Sublingual B12 helped speed that along.

Ataxia can take longer to resolve. For me the biggest difference was noticed at 6 months and continued to improve for a while after that. My ataxia was very far advanced though and others might see improvement sooner. I had also thought the damage might be permanent but within a couple years the only time I got ataxic was when I was glutened and now that I have been gluten free for 9 years it doesn't even appear then. Physical therapy also helped me a great deal. It can take a long time for nerve issues to heal but they should heal so don't lose hope.

come dance with me Enthusiast
come dance with me
Posted

Have a whole gluten-free chocolate cake. If you make it at home you won't be able to tell them apart like you can with the bought type.

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Kquad Apprentice
Kquad
Posted

Some of my neuro problems went away pretty quickly like depression and the pins and needles sensation. Sublingual B12 helped speed that along.

Ataxia can take longer to resolve. For me the biggest difference was noticed at 6 months and continued to improve for a while after that. My ataxia was very far advanced though and others might see improvement sooner. I had also thought the damage might be permanent but within a couple years the only time I got ataxic was when I was glutened and now that I have been gluten free for 9 years it doesn't even appear then. Physical therapy also helped me a great deal. It can take a long time for nerve issues to heal but they should heal so don't lose hope.

Thanks ravenwoodglass :)

frieze Community Regular
frieze
Posted

As i said in another post, mine ( neuro) lasted 6 weeks going off gluten and faded away. The only things now, is that when I get glutened, the neuro symptoms are much worse. The GI stuff only lasts for 2 weeks. I am now 7 weeks later and still having some neuro symptoms. I am beginning to think, that I may have some permanent damage now. The neurologist and I both think I have gluten ataxia now. It evidently is progressive with repeated exposure.

On the plus side, I feel like someone has taken their foot off the accelerator in my brain for the first time in years. My wife said I am getting to be more like the person she married and I can go to the store and remember why I am there. Nearly a decade of being told I had IBS, with no real testing! May have been able to miss a lot of this and now having possible permanent damage ( mainly visual stuff, but some balance issues)

before you give up on the ataxia, try CoQ10, this turned out to be my issue, rather than gluten. Though i wouldn't swear that the gluten didn't make it worse.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

Thank you all so much for the advice! I am not taking ANY multi vitamins right now....duh...so dumb! :rolleyes:

I am headed to GNC today to stock up! I am also going to make a Betty Crocker gluten-free devils food cake, and yes, I might just eat the entire thing! B)

One last question....do you think I should see a neurologist and get her take on all of this? What are the chances that she will be familiar with gluten ataxia and all of the other "atypical" symptoms of gluten intolerance? My primary care doc gave me a referral to one before I got my Celiac dx, because she wanted to rule out MS!! :o Or should I give it 6 months or so and re-evaluate, hopefully some of this stuff will have gone away. Would there be any benefit of getting neuro testing now and then tracking the possible improvement on a gluten-free diet?

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    • AlwaysLearning
      Gluten related ??

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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
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      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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