Jumpy eyes ?

[C4Celiac]

Anyone else here have the Jumpy eyes thing ?

This was one of the first symptoms I noticed months before I started having any stomach pain and other symptoms. I didn't know what it was at the time and thought it was just from tired eyes etc. but it's definitely from Celiac.

Basically your eyes will jump or move on their own involuntarily for a split second while trying to concentrate on reading fine print or trying to stay focused on one single spot like a dot on wall.

This improved after going Gluten free but I still notice it mildly.

[knitty kitty]

My eyes would do the jumpy eye thing.  I had vitamin deficiencies.  I took B Complex and Allithiamine and magnesium.  And the jumpy eye thing went away.

[Scott Adams]

In some celiacs gluten attacks the brain and nervous system, and the articles in the category below are about this. The good news is that in those who stay 100% gluten-free, the damage done can heal, but I agree that most celiacs need to take vitamin & mineral supplements to recover.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

[Russ H]

On 5/8/2022 at 9:29 AM, C4Celiac said:

Anyone else here have the Jumpy eyes thing ?

This was one of the first symptoms I noticed months before I started having any stomach pain and other symptoms. I didn't know what it was at the time and thought it was just from tired eyes etc. but it's definitely from Celiac.

Basically your eyes will jump or move on their own involuntarily for a split second while trying to concentrate on reading fine print or trying to stay focused on one single spot like a dot on wall.

This improved after going Gluten free but I still notice it mildly.

It is called nystagmus. It is mentioned in this excellent talk "What does gluten do to your brain?" at 5:30 from the start. In the study, 11% of newly diagnosed gastro-intestinal coeliac patients had nystagmus.

What does gluten do to your brain? Youtube

[knitty kitty]

Nystagmus is a symptom of Thiamine insufficiency or deficiency.  

Here's a video about Thiamine insufficiency and its effects on the brain.  

See how much gluten ataxia and thiamine deficiency have in common.  The same areas of the brain are affected.  White lesions occur in thiamine deficiency in the same areas as those that occur with gluten ataxia.  

I'm not saying gluten ataxia is caused by thiamine deficiency, but thiamine is needed to clear the excess glutamate (which is made from gluten) and to protect and repair brain cells.  

High calorie malnutrition is when more carbohydrates are consumed without sufficient Thiamine to turn the carbohydrates into energy.  Eating a SAD (Standard American Diet) is a high carbohydrate diet.  It is also low in Thiamine.  

https://m.youtube.com/watch?v=m1-dXJCYVIM

 

[Scott Adams]

You may want to browse through the other posts and articles that mention this symptom, as others have written about it:
https://www.celiac.com/search/?q=nystagmus&quick=1

[ViolaRose]

On 5/10/2022 at 1:27 PM, Scott Adams said:

In some celiacs gluten attacks the brain and nervous system,

Oh man that might be what’s happening to me. I feel so dumb lately 😭

[Scott Adams]

This category has many articles on the this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

and brain fog is a symptom that many celiacs have...got to avoid gluten!

 

[Jesschica]

On 5/8/2022 at 4:29 AM, C4Celiac said:

Anyone else here have the Jumpy eyes thing ?

This was one of the first symptoms I noticed months before I started having any stomach pain and other symptoms. I didn't know what it was at the time and thought it was just from tired eyes etc. but it's definitely from Celiac.

Basically your eyes will jump or move on their own involuntarily for a split second while trying to concentrate on reading fine print or trying to stay focused on one single spot like a dot on wall.

This improved after going Gluten free but I still notice it mildly.

Oh My gosh!! Thank you , I have Celiac disease in late stages , I am very sensitive to everything. I have been trying for the life of me to figure out why my eyes did this. I talked to my eye doctor about it and referred me to a specialists , so now I know I am not crazy and other ppl have this. I can't tell you how much this helps me, thank you.. Im at the point where Celiac disease is causing organs to fail , Liver, heart, eye and kidney. The liver and heart get checked every three months , at one point they didnt think i was going to make but yet I keep fighting. I was diagnosed over 14 years ago.  I have been sickly all my life.

[trents]

11 minutes ago, Jesschica said:

Oh My gosh!! Thank you , I have Celiac disease in late stages , I am very sensitive to everything. I have been trying for the life of me to figure out why my eyes did this. I talked to my eye doctor about it and referred me to a specialists , so now I know I am not crazy and other ppl have this. I can't tell you how much this helps me, thank you.. Im at the point where Celiac disease is causing organs to fail , Liver, heart, eye and kidney. The liver and heart get checked every three months , at one point they didnt think i was going to make but yet I keep fighting. I was diagnosed over 14 years ago.  I have been sickly all my life.

Jesschica, may we assume you are experiencing these ongoing problems even though you are practicing a strict gluten free diet?

[Wheatwacked]

13 minutes ago, Jesschica said:

Im at the point where Celiac disease is causing organs to fail ,

What kind of problems? On GFD with appropriate nutrition you should be getter better while your friends not on GFD will get sicker. Are you eating enough vitamins in your food. Are you on prescribed medications. Many problems are simply nutrition but get misdiagnosed and treated with drugs that cause other problems. Choline is one that deficiency will cause liver problems. 90% of the "western diet" do not eat enough eggs and meat to get enough choline. It can caused birth defects, high homocysteine, gall bladder problems, liver failure for starts. Most everyone with autoimmune diseases have deficient vitamin D. Low potassium, according to the WHO  causes high blood pressure  Low iodine thyroid issuses and so on. Homocysteine is the result of metabolism think of it as the sewage and is used as an independant indicator of vascular inflammation. The B vitamins, Choline and Folate work to recycle it. Getting sicker as we get older is not a ''given'. It is more a result in my opinion ult of poor nutrition. It what we DON'T eat as we age that kills us (and car accidents). Hicarbohydrate Malnutrition is ignored by the medical community but fairly common in Cellac Disease.

Here is a link to a list of foods intended to help identify if you are super sensistive or being cross contaminated. From The University of Maryland Center for Celiac Research in Baltimore, MD. The whole article: Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Table 1 Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

[Jesschica]

38 minutes ago, trents said:

Jesschica, may we assume you are experiencing these ongoing problems even though you are practicing a strict gluten free diet?

Yes, My celiac is very advanced and even on a strict diet, my celiac number is high , Right now there is a wheat field surrounding my house , so symptoms have def flared up.

[Jesschica]

15 minutes ago, Wheatwacked said:

What kind of problems? On GFD with appropriate nutrition you should be getter better while your friends not on GFD will get sicker. Are you eating enough vitamins in your food. Are you on prescribed medications. Many problems are simply nutrition but get misdiagnosed and treated with drugs that cause other problems. Choline is one that deficiency will cause liver problems. 90% of the "western diet" do not eat enough eggs and meat to get enough choline. It can caused birth defects, high homocysteine, gall bladder problems, liver failure for starts. Most everyone with autoimmune diseases have deficient vitamin D. Low potassium, according to the WHO  causes high blood pressure  Low iodine thyroid issuses and so on. Homocysteine is the result of metabolism think of it as the sewage and is used as an independant indicator of vascular inflammation. The B vitamins, Choline and Folate work to recycle it. Getting sicker as we get older is not a ''given'. It is more a result in my opinion ult of poor nutrition. It what we DON'T eat as we age that kills us (and car accidents). Hicarbohydrate Malnutrition is ignored by the medical community but fairly common in Cellac Disease.

Here is a link to a list of foods intended to help identify if you are super sensistive or being cross contaminated. From The University of Maryland Center for Celiac Research in Baltimore, MD. The whole article: Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Table 1 Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

I do have a vitamin D deficiency. I take prescribed , I have no Immune system, it is very weak.  I am super strict on what i put in my mouth or on my hair skin and such. when I was diagnosed they thought I would have life long struggles, as my insides looked like it was put in a blender and pureed, then shoved back in my body. another 6 weeks and i wouldnt be here today. so im sure this has caused so many other issues.

[trents]

8 minutes ago, Jesschica said:

I do have a vitamin D deficiency. I take prescribed , I have no Immune system, it is very weak.  I am super strict on what i put in my mouth or on my hair skin and such. when I was diagnosed they thought I would have life long struggles, as my insides looked like it was put in a blender and pureed, then shoved back in my body. another 6 weeks and i wouldnt be here today. so im sure this has caused so many other issues.

It is confusing when you say you have no immune system, yet celiac disease is an autoimmune disorder. So, at least some facets of your immune system are still present.

[Jesschica]

17 minutes ago, trents said:

It is confusing when you say you have no immune system, yet celiac disease is an autoimmune disorder. So, at least some facets of your immune system are still present.

In other words, My immune system is very weak , I get a germ and am down for weeks .They are looking into other autoimmune issues , i might have as well

[trents]

10 minutes ago, Jesschica said:

In other words, My immune system is very weak , I get a germ and am down for weeks .They are looking into other autoimmune issues , i might have as well

Have you had genetic testing done?

[Jesschica]

6 minutes ago, trents said:

Have you had genetic testing done?

No , other then a few family members also being diagnosed and we have alot of other illnesses that run in the family . im sure that would be a good idea to do.

9 minutes ago, trents said:

Have you had genetic testing done?

I have done 23 and me.

[Wheatwacked]

How long have you had low D? Taking the prescribed 400 iu a day they typically prescribe is simply a cruel joke on you. Vitamin D is not just about Rickets. It is a major player in the autoimmune world. Low D could be your answer, Fix that and look for more. My son is a lifeguard, spends his whole day in the sun and was diagnosed low D (less than 29 ng/ml) last August. He was told to take 400 IU. I am a couch potato, take 10,000 IU a day since 2015 and my blood level took a long time to get there (in 2018 it was 47 nc/ml) is steady over the last 3 years at 80 ng/ml.  So do you know what your vitamin D blood is? There is lots of scary warnings about the bad side effects of too much vitamin D but our whole population is running on empty Someone is trying to convince us low D is normal. Maybe it was a misquided attempt to reduce population growth.

"A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;"  Surge of information on benefits of vitamin D, but no interventional trial data exist yet to ensure safety

Possible Role of Vitamin D in Celiac Disease Onset

Mayo Clinic Proceedings: Vitamin D is not as toxic as once thought.

[C4Celiac]

there's not really a late stage of celiac..   there's just celiac...    or non responsive celiac..   you might have refractory celiac and need to be on Immune suppression drugs... but the fact that you say your immune system is very weak,.....    something doesn't sound right here.

If your immune system was weak... your antibody levels would not be very high since your weak immune system wouldn't care much about the gluten to begin with.

something is causing your immune system to be weak..  but it wouldn't be from Celiac