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Was Diagnosed With Doctor Suspecting Ms, But I Wonder If It Could Be Celiac


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#31 e320_cdi

 
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Posted 16 December 2011 - 01:04 AM

I was having all kinds of vision issues....blurred, double, striped pattrns were blinding, certain colors were too bright and hurt my eyes. Went to eye doc, eyes were fine, he suggested a diabetes test which I did and that turned out fine. Finally someone here on this site mentioned they tried cod liver oil for some of the same issues so I tried it. Took 3 a day like the bottle suggested and in a matter of days my vision improved. I no longer have any of the symptoms mentioned.


Did you happen to have any eye pain/redness with your symptoms? It seems as if my eyes are not producing the tears they once were and they are a little red.
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#32 e320_cdi

 
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Posted 17 December 2011 - 08:27 PM

I just wanted to report that after a one week gluten free diet, I have not had D in a whole week. I am still awaiting my test results, but am very happy with what I am seeing so far.

Still waiting for the vertigo and eyesight to clear up, but I understand that may take some time.
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#33 ravenwoodglass

 
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Posted 18 December 2011 - 04:42 AM

I just wanted to report that after a one week gluten free diet, I have not had D in a whole week. I am still awaiting my test results, but am very happy with what I am seeing so far.

Still waiting for the vertigo and eyesight to clear up, but I understand that may take some time.


Glad to hear this! I am sure you will continue to improve. When I was diagnosed I thought just the D would stop as I had no idea that all the arthritic pain and brain issues were celiac related. For me healing came in subtle ways at first but by six months I caught myself running up the stairs that I used to have to pull myself up. It still seems a miracle to me. I hope you continue to improve at a steady pace but we can have some ups and downs at first. Don't get discouraged if the eye and balance issues take a bit of time. I did find taking sublingual B12 seemed to help the nerves heal a bit more quickly. A script for a physical therapist was also helpful for me with the balance issues and that might be helpful for you also if your insurance will cover it.
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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)

#34 NoodleUnit

 
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Posted 20 December 2011 - 06:17 AM

Just to echo Ravenwoodglass. My nerve issues seemed to dissipate much more rapidly after heeding advice on here and taking a vitamin b complex supplement, which I am now taking again to try and help with the neuro issues which resurfaced after I went back on gluten prior to my own endoscopy.

They do a damn fine line in good advice here :)
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#35 e320_cdi

 
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Posted 28 December 2011 - 06:52 AM

I just wanted to give an update to my tests and current condition. I am still gluten free and have not had near (or any, for that matter) stomach upset. The blood work, as expected, returned negative for celiac. I requested the results for the blood tests and am awaiting them. I was told that the B12 was "within range" but I don't have the numerical values, yet. I am going to get that. I was told that vitamin D was low and was actually prescribed vitamin D in 50,000 IU once a week for four weeks.

I have a new neurological symptom that has come up. As of last Thursday, I am getting double vision for just a few seconds when I change positions, almost like my blood pressure is dropping, but that doesn't seem to be what it is as I can't get a low reading. It happens when I am driving, laying in bed, etc. Before I get the double vision, I get a tingling feeling in my tongue a few seconds before. Then the double vision sets in for about 10 -15 seconds, and goes away. Shortly after that, the tingling goes away in my tongue. I am not sure what is the cause of that yet.
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#36 ravenwoodglass

 
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Posted 28 December 2011 - 07:09 AM

I just wanted to give an update to my tests and current condition. I am still gluten free and have not had near (or any, for that matter) stomach upset. The blood work, as expected, returned negative for celiac. I requested the results for the blood tests and am awaiting them. I was told that the B12 was "within range" but I don't have the numerical values, yet. I am going to get that. I was told that vitamin D was low and was actually prescribed vitamin D in 50,000 IU once a week for four weeks.

I have a new neurological symptom that has come up. As of last Thursday, I am getting double vision for just a few seconds when I change positions, almost like my blood pressure is dropping, but that doesn't seem to be what it is as I can't get a low reading. It happens when I am driving, laying in bed, etc. Before I get the double vision, I get a tingling feeling in my tongue a few seconds before. Then the double vision sets in for about 10 -15 seconds, and goes away. Shortly after that, the tingling goes away in my tongue. I am not sure what is the cause of that yet.


If you haven't already do get the sublingual B12. Glad to hear the tummy issues have cleared up but be aware that it does take a bit longer for the neuro issues to resolve. Do get copies of the B12 levels. Doctors used to have the cut off at 250 but now they are saying the cut off before suppelements should be 500 but not all doctors are up on that. In addition we can register normal B12 levels for a long time after our bodies are unable to really utilize it. I was told my levels were 'within normal limits' when I was at 255. Supplements made an incredible difference even before I was gluten free.
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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)

#37 e320_cdi

 
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Posted 28 December 2011 - 10:15 AM

Will do. Will try to get those today do you have a recommended dosage?
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#38 ravenwoodglass

 
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Posted 28 December 2011 - 11:25 AM

Will do. Will try to get those today do you have a recommended dosage?


I would get the highest dosage you can find easily. I have taken the 1000 and the 5000 levels. It will seem like a lot but there is no toxic level and any your body can't use will be excreted. Hopefully it will make a difference for you.
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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)

#39 e320_cdi

 
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Posted 31 December 2011 - 09:12 AM

I was able to find the 1000mcg and got them. Will let you know how they do! They also have B6 and Folic Acid.
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#40 GottaSki

 
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Posted 02 January 2012 - 08:15 AM

My primary now runs the following tests on my annually - if I am not visiting my celiac doc:

tTG IgA
Iron, Ferretin, Copper & Zinc
Vits A, B1, B2, B6, B12, D, K

and if you haven't had the following tests, it might help rule out other autoimmune disorders:

ANA
Liver Panel
ALL Thyroid
Erythrocyte Sedimentation Rate
C-reactive protein

Lastly, do you have a severe reaction to hot or cold. Hard to get warm &/or overheat while exercising or in warm/humid weather? I ask this as many of my symptoms prior to removing several foods were similar to yours and now I only have this seemingly "broken internal thermostat".
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#41 Skylark

 
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Posted 02 January 2012 - 11:34 PM

I was able to find the 1000mcg and got them. Will let you know how they do! They also have B6 and Folic Acid.

Studies show 1000 mcg/day will reverse a deficiency. Glad to hear you're at least having less diarrhea.

Maybe you already know this, but for nervous system damage you also want to eat animal fats and cholesterol generously. The myelin you are trying to rebuild is made of essential fatty acids and phospholipids you get in animal foods. It also makes sure you get enough of the fat-soluble vitamins like A, D, and K in their natural forms. Enjoy lots of real butter (no margarine, please), eat the skin on your chicken, have an egg or two every day for the brain-healing cholesterol and lecithin in the yolk, and take a fish oil supplement for omega-3 fatty acids. Sardines are even better if you like them. Avoid trans-fats like the plague, and never eat foods fried in big vats of heated vegetable oil. (Trans fats form with the heat - frying should be done in tallow, lard, ghee, or coconut oil in a pinch.) Sally Fallon's book called Nourishing Traditions is really good. It explains the health benefits of natural fats and how to get the most nutrition out of your food.

Have you gone off casein as well? There is a link between casein and type 1 diabetes, and some people think casomorphins (opiate-like peptides formed if you don't digest casein perfectly) may be generally bad for your immune system.

I'd also strongly suggest you look into low-dose naltrexone. If it is MS you're dealing with and not celiac, it may be helpful. http://www.lowdosenaltrexone.org/
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#42 e320_cdi

 
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Posted 03 January 2012 - 01:16 PM

Lastly, do you have a severe reaction to hot or cold. Hard to get warm &/or overheat while exercising or in warm/humid weather? I ask this as many of my symptoms prior to removing several foods were similar to yours and now I only have this seemingly "broken internal thermostat".


I used to stay hot all the time and get a stomach ache. Now I don't get hot really at all, and stay cold more now. My hands do stay a little chilly.
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#43 domesticactivist

 
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Posted 03 January 2012 - 01:37 PM

Maybe you already know this, but for nervous system damage you also want to eat animal fats and cholesterol generously. The myelin you are trying to rebuild is made of essential fatty acids and phospholipids you get in animal foods. It also makes sure you get enough of the fat-soluble vitamins like A, D, and K in their natural forms. Enjoy lots of real butter (no margarine, please), eat the skin on your chicken, have an egg or two every day for the brain-healing cholesterol and lecithin in the yolk, and take a fish oil supplement for omega-3 fatty acids. Sardines are even better if you like them. Avoid trans-fats like the plague, and never eat foods fried in big vats of heated vegetable oil. (Trans fats form with the heat - frying should be done in tallow, lard, ghee, or coconut oil in a pinch.) Sally Fallon's book called Nourishing Traditions is really good. It explains the health benefits of natural fats and how to get the most nutrition out of your food.


Skylark- you know I'm all about saturated fat and this thinking makes sense to me. However, I have a friend with MS who has been told she needs to stick to an extremely low-fat diet, which does seem to help her symptoms. I have read some studies backing that idea up. It seems very counter-intuitive to me, but I don't have data to back up another perspective. Enlighten me?
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#44 Skylark

 
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Posted 04 January 2012 - 09:02 AM

Skylark- you know I'm all about saturated fat and this thinking makes sense to me. However, I have a friend with MS who has been told she needs to stick to an extremely low-fat diet, which does seem to help her symptoms. I have read some studies backing that idea up. It seems very counter-intuitive to me, but I don't have data to back up another perspective. Enlighten me?

I am glad to hear that your friend has found a diet that works for her!

The Swank diet is controversial. There are equal numbers of people with MS (which may be celiac) who have gotten well gluten-free/CF. Swank diet includes omega-6 fatty acids, which are inflammatory as well as omega-3. Part of the benefit may be getting rid of trans-fats and certain inflammatory fatty acids that show up in gran-fed, unhealthy feedlot beef. The thing that changed my thinking about saturated fat was Mary Enig's observation that almost every saturated fat study has failed to distinguish between hydrogenated vegetable oil and natural animal fat. On top of that, much of the saturated animal fat eaten today has an altered fatty acid profile from unnatural feed. You make a good point about dairy fat - diet for MS should probably be casein-free, which leaves only ghee. Casein combined with leaky gut is starting to look like a problem for EVERYONE with autoimmunity because of the casomorphin.

Swank diet will lower trans-fat, lower consumption of feedlot beef, and lower casein consumption because of the restrictions on cheese. These are all probably good things. Swank is also high in fish oil, which is tremendously important. I would be surprised if pastured eggs, organic ghee, or coconut oil pose a problem for people with MS.

Something like this would make the most sense, noting that the inflammatory animal fats are probably those from unhealthy animals. http://www.msnews.or...iple-sclerosis/ Red meat from grass-fed beef, bison, or venison is actually pretty low-fat and is probably fine.
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#45 domesticactivist

 
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Posted 04 January 2012 - 11:57 AM

I am glad to hear that your friend has found a diet that works for her!

The Swank diet is controversial. There are equal numbers of people with MS (which may be celiac) who have gotten well gluten-free/CF. Swank diet includes omega-6 fatty acids, which are inflammatory as well as omega-3. Part of the benefit may be getting rid of trans-fats and certain inflammatory fatty acids that show up in gran-fed, unhealthy feedlot beef. The thing that changed my thinking about saturated fat was Mary Enig's observation that almost every saturated fat study has failed to distinguish between hydrogenated vegetable oil and natural animal fat. On top of that, much of the saturated animal fat eaten today has an altered fatty acid profile from unnatural feed. You make a good point about dairy fat - diet for MS should probably be casein-free, which leaves only ghee. Casein combined with leaky gut is starting to look like a problem for EVERYONE with autoimmunity because of the casomorphin.

Swank diet will lower trans-fat, lower consumption of feedlot beef, and lower casein consumption because of the restrictions on cheese. These are all probably good things. Swank is also high in fish oil, which is tremendously important. I would be surprised if pastured eggs, organic ghee, or coconut oil pose a problem for people with MS.

Something like this would make the most sense, noting that the inflammatory animal fats are probably those from unhealthy animals. http://www.msnews.or...iple-sclerosis/ Red meat from grass-fed beef, bison, or venison is actually pretty low-fat and is probably fine.


Thank you for your thoughts. I, too, have had the same impression about studies done on fats. Industrial fats are a bad idea, regardless of the source. They've studied THAT and then given all fat a bad name. So I'm curious... in our last exchange on the subject you were saying that while the GAPS diets emphasis on saturated fats was fine for kids, that it was risky for adults. Do you still feel the same, or have you changed your opinion?
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.




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