Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Long Did It Take?
0

10 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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.... ;)

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,643
    • Total Posts
      921,569
  • Topics

  • Posts

    • Hey there! Welcome to the club you never wanted to be a part of. Boy, you are certainly throwing yourself one heck of a bang up pity party aren't you? PLEASE do not take that as a put down! I don't think there is a single solitary one of us who hasn't thrown ourselves at least 1 pity party. I know I've thrown at least 3. Oh, & crying meltdowns in the grocery store? Every one has been there, done that one too. It's all part of the process just like cyclinglady said. Ravenwoodglass is right on too about how it can mess with your head. Boy! Can it ever mess with your head! You really have been given excellent info. by all who have answered. I want to touch on something that hasn't been addressed yet but you mentioned it and that is kissing. You might call me an old lady as I'm just shy of 60 but I'm also a child of the 60's so remember that when you read what I'm going to tell you. BTW, I'm married to the same person, my only marriage, for 43 years. Anyone who cuts & runs because they have to brush their teeth before kissing you is not worth 2 minutes of your time and you are well rid of them! Be thankful that you have this "screening tool" because it will save you a lot of wasted time. If they won't even give you a chance when they hear about the precautions you have to take then they aren't worth a damn! Imagine someone like that standing by your side when times get tough. You can't can you? That's because they won't and you want a true partner who will support you and hang in there through the challenges we face in life & believe me, you will both face many life challenges.  Cooking. You don't have to be a gourmet. Cook simple. You know how to boil & scramble & fry eggs right? Only takes a couple minutes. Veggies? Aw heck, nuke 'em OR throw them on a baking pan spritz them with olive oil & spices of your choice & stick them in the oven. Smoothies are easy. Fresh fruit is well, fresh fruit - easy - peel it & eat it or just pop it in your mouth. Sweet potatoes can be nuked too & are wonderful for you. Salads are easy. Nut butters are a great source of protein. Karen had some great examples in her post too. Her "attitude adjustment" tips are great as well.  
    • Hi I'm still being tested. Got some blood drawn recently. My rheumatologist suspects celiac. I've been sick for a while with all sorts of symptoms. I've started a gluten free diet as my doctor told me try for 1-2 months to see if it helps. I've already had the blood drawn while I was eating gluten. My question is. Is it normal to have painful digestion and fishers when just recently quitong gluten? I've been gluten free only a mere two days. I know it takes time. But seems a bit worse? Is that normal?
    • I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low. Edit: Also my blood pressure was low when my ferritin level got very low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,648
    • Most Online
      3,093

    Newest Member
    Mileenabug
    Joined