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How Long Did It Take?


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9 replies to this topic

#1 pain*in*my*gut

 
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Posted 12 September 2011 - 03:03 PM

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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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

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#2 lolololo

 
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Posted 12 September 2011 - 06:01 PM

It's been about two weeks for me and I'm still getting symptoms that you've described. I guess it takes time.
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#3 pain*in*my*gut

 
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Posted 12 September 2011 - 07:50 PM

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.... ;)
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#4 Kquad

 
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Posted 12 September 2011 - 11:06 PM

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)
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#5 AVR1962

 
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Posted 12 September 2011 - 11:17 PM

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
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#6 ravenwoodglass

 
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Posted 13 September 2011 - 02:44 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 come dance with me

 
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Posted 13 September 2011 - 03:51 AM

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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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#8 Kquad

 
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Posted 13 September 2011 - 08:02 AM

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 :)
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#9 frieze

 
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Posted 13 September 2011 - 08:07 AM

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.
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#10 pain*in*my*gut

 
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Posted 13 September 2011 - 08:26 AM

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
Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost




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