• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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:
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
Ads by Google:


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
      107,326
    • Total Posts
      935,509
  • Member Statistics

    • Total Members
      64,988
    • Most Online
      3,093

    Newest Member
    Sue Seguin
    Joined
  • Popular Now

  • Topics

  • Posts

    • Oh goodness me so do you guys bother to get histamine level diagnosed or do you just treat it as you did the food diary ? taking note of high histamine time of year/ season and diet into your seasonal food diet? I'm pretty good at rotating foods I've done that longer than I've known about my issues from a nutritional standpoint I rotated which is why until the gluten challenge derailed my immune system entirely. it was challenging enough to do that gluten challenge I am not really up for more testing. I have symptoms of IC, POTS, fibromyalgia, and now you reveal that yes histamine threshold are part of the celiac autoimmune party bag too. how do all branches of medicine not find this group the most intriguing group of people ever? Really?Or Do you just all avoid them and go on your merry way? Ennis - what almond milk can you drink ? the almond milk 3 we tried/ bought prior to making my own (had unlabeled ingredient  fortified and thickeners corn derived added. ) I was shocked to call and discover it had it in (not labeled as it was corn not top 8) it finally explained why the right elbow joint hurt but it was a small enough derived amount of derived  corn not to trigger the Full blast corn intolerance symptoms. For this reason and now the orange juice incident I'm really leery of unidentified corn or corn derivatives or highly processed any additive for they are prevalent in processed land.  
    • Yeah I have 2 stationary pedal bikes. I use one on the desk sometimes while watching a show and work out my arms. I keep one under the desk and pedal on it for hours a day, really helps with my restless leg issues and stress (just gotta keep moving or I start feeling like a panic attack is coming on trapped by life like a rat in a cage. If you need to know were to find the ground cocoa nibs look up crio bru, they sell it as a coffee replacement for $23 for 1.5lbs they have different origin and different roast levels so you can get different flavored cocoa nibs I get several and mix them up.
    • Yeah the histamine thing hit home a bit for me, as it mentioned everyone has their upper limits on it...explains why green canned fresh tomatoes fine...overly ripe sweet ones....instant puking, and why I have to really limit anything the citric acid, lemon, lime, garlic, onion, etc to very small amounts. Sorta funny how that works. like everything has a invisible number and if they add up to above my limit I am puking Makes eating annoying sometimes lol.  OH bit of a thought, I RARELY make almond milk cause it leaves a almond paste behind that I only have one use for and if sales at the bakery are bad I am better off just buying the stuff at the store and drinking in moderation. ANYWAY I use the almond paste mixed with coconut flour, left over almond butter batches, xylitol, apple sauce, and a tsp of a extract of choice to make the almond butter mini muffins for my bakery. They are a bit of a product of recycled foods lol. Taste great, super moist, grain free, mostly sugar free, and I can eat them no problems...they also freeze for months.   Love making them with our pirate butter (butter rum), Cheese cake butter (dairy free cheese cake extract in the almond butter) or any of the others for that matter.  
    • Did you get any of your vitamin and mineral levels checked for deficiencies?  You don't have to be Celiac to develop deficiencies.   Peripheral neuropathy may be caused by deficiencies of B12, copper, vitamin E, B6, B1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/ Not dreaming can be caused by B6 deficiency. https://www.ncbi.nlm.nih.gov/pubmed/11883552 Tachycardia may be caused by deficiencies of B1, B12, vitamin C http://www.livestrong.com/article/503879-vitamin-deficiencies-racing-heart/ Ehlers Danlos can be helped by calcium, magnesium, vitamin C, and others https://www.ncbi.nlm.nih.gov/pubmed/15607555 And that funky color of your colon, melanomas coli, vitamin E deficiency https://www.researchgate.net/publication/22087649_Ceroid_enteropathy_and_vitamin_E_deficiency IMHO, doctors would rather treat the symptoms than cure the real problems. Hope this helps.
    • SSB <3.3 RLU <=20 (reference range) RNP <3.5 RLU <=20 Sm <3.3 RLU <=20 SSA Ro52 <2.3 RLU <=20 SSA Ro60 <4.9 RLU <=20 Scl 70 <1.2 RLU <=20 Jo 1 <2.2 RLU <=20 ds DNA Negative FANA Positive FANA Titer 1:640 FANA Pattern Homogeneous    
  • Upcoming Events